Tuesday, 23 August 2016

Coming back to work after a long illness

Written by Raul Pacheco-Vega
Raul has kindly given us permission to re-post this article from his own website. The original can be found here:
If you followed my Twitter feed in the past couple of weeks you’ll know that I fell really ill right after my two weeks of fieldwork in Madrid. My family doctor says it was a combined influenza plus overexhaustion plus almost-pneumonia kind of illness, and he got me on a two-week course of antibiotics (one week of injections and one week of pills). I am barely finished with the antibiotics and have started feeling like a human again. The first week was terrible. I had to sleep 24 hours in a row, for two days in a row.
I learned a few things these past two weeks. The first one is that some people will not understand that being ill is not a choice, and that my main focus is, and should be on getting better, not finishing a chapter/paper/article. I think it is not worth working with someone who doesn’t understand the human aspects of academia. I don’t work weekends. I don’t work holidays. I don’t work when I am sick.If that doesn’t work for you, then I don’t want to work with you.
The second thing I learned is that I should trust my doctor when he says that I need to recharge my batteries and to choose my activities wisely. He said “you will have energy to do ONE thing per day. ONE. So, be wise about which activity you do each day while you recover”. That’s exactly what I did. For example, on Wednesday, I chose to promote the Bachelor of Public Policy program in Leon, where my parents live. It was exhausting and I needed to just keel over and sleep for an hour afterwards. On Tuesday, I chose to attend an important meeting with my CIDE colleagues. On Thursday, I chose to attend a meeting with our students. I didn’t worry about doing anything else. I only had energy to do ONE thing and I did it well. And then I went back to sleep.
The third thing I learned is that I should avoid forcing myself to do anything, particularly work, while I’m convalescent. Contrary to what many people may think, I have a very fragile physique. I have severe allergies (alcohol and lactose, just to start), and my immune system has been compromised since I was a child. I’ve had to take care of myself since I was very little, and while the past few years I was able to avoid falling gravely ill, this 2016 seems to have taken a toll on me way too early, and thus I need to rest even more, as my Spring semester is actually quite busy.
The fourth thing I learned is that I should only gradually come back to do my activities, instead of trying to Get Everything Done As Soon As I Feel Remotely Healthy. I have been doing one, two small things in addition to one big thing every day, and I feel much better.
And the fifth thing, which probably should be the first, is a reminder of something I already knew: no academic accolades are worth your health and your life. No matter how many papers you are supposed to publish per year, how many conferences, your health is and should be first.

About the Author

Raul is an Assistant Professor in the Public Administration Division of the Centre for Economic Research and Teaching (Centro de Investigacion y Docencia Economicas, CIDE, AC) based out of CIDE Region Centro in Aguascalientes, Mexico. His research lies at the intersection of space, public policy, environment and society. He is primarily interested in understanding the factors that contribute to (or hinder) cooperation in natural resource governance.

Thursday, 18 August 2016

Metrics of Productivity

Written by Wanda Diaz Merced
During the month of September 2015, I was invited to an inclusion summit by the American Astronomical Society (AAS).  On my way to the summit I took a shared shuttle ride.  A very nice and talkative couple shared the journey with me.  Their destination was their house and mine the AAS office in Washington DC. Of course, we chatted all the time. I love chatting!
The lady introduced herself as a member of staff at the Fulbright Commission. We chatted and laughed all the way. The conversation reached a point where she mentioned her various trips to a country in Africa, to which I replied "I have been there many times too!".  That led me to explain why and to talk about my academic research.  It was very good to hear the “how do you do it?” question right after I told them about my work.
When we got to that point, being unemployed myself, I spoke about how some people’s disabilities lead them to make grammatical mistakes in their resumes, essays and in job application forms that are often not user centered.  I also spoke of technology like screen readers, which despite being helpful, do not prevent us from making mistakes that may lead to incomplete applications or unattached required documents leaving our applications destined for the rejection pile.
I had the same challenge when doing my PhD.  Because I did not ask for a proofreader, upon turning my thesis in I had a whole chapter inserted into the table of contents and during the viva the examiners asked me why I had not included a conclusion chapter.  I had written it but it never made it into their hands.  Beyond that, my examiners mentioned that paragraphs were repeated and pages were numbered twice among other issues.   Luckily for me, my university took action and paid a proofreader, who helped me to correct all the grammatical mistakes and my examiners understood the situation.
However, what about a recent graduate who has a disability causing the occurrence of grammatical mistakes who cannot pay an editor or someone to proofread or help with the job application process?  What about the mentality in scientific academia in the field of astronomy and computer science (I only know astronomy and computer science) of a productivity metric based on written publications?  What about the fact that people who are disabled are expected to perform like a traditional academic (I still use astronomy and computer science as an example) using the same interfaces and perhaps strategies.  As a blind person I have my own strategies; why do I have to be assessed against the established metrics if I have to complete an application that has been made only for sighted users, when I navigate the application with my ears?    How much more difficult is it to compete fairly for a job when your cv is destined for the rejection pile because a grammatical mistake potentially has more weight than your achievements, or because we just could not deal with the presentation of the job application?
I choose to use sound to analyze my data but I have to present anything I find in the data visually to my peers.  When my collaborators bring data to me no one provides a sound file for me to evaluate the data as a peer.  I have also failed to make them aware that I use sound to analyze my data because my performance is at its highest.  They provide a chart.  It is true that the chart may be embossed so that I can use touch to “read” it but in my case having access to the data behind the charts allows me to hear it and do a more thorough evaluation of possible features that may be significant.
I humbly think that while academia is affected by these sorts of inequalities, some are at a disadvantage.  There is no malice; it happens unwittingly but to me this is equivalent to suffer a death by a hundred paper cuts.  At the same time I believe firmly that evaluation metrics have to change to establish a heterogeneous environment in academia, that better awareness will decrease the bias of review boards and that we will be able to level the playing field.  I do not underestimate the effort this will take.  This is a situation that affects all people with disabilities in academia, those applying for post-docs and anyone with a disability who is job hunting.   This is robbing people with disabilities from equal opportunities to display our talents and dignified, meaningful work.  Anyone may develop a disability at any time.  Academics with and without disabilities from every background should unite and work towards leveling the playing field.  People with disabilities do things with our bodies that the able-bodied person has never thought of; if we are allowed to participate as equals, a new type of academia will emerge with people exploring, discovering and employing innovative coping strategies the able-bodied would never think of. 

About the Author

Wanda is a Computer Scientist and Astronomer with a PhD from the University of Glasgow in Scotland.  She is now affiliated to the Office of Astronomy for Development located at the South African Astronomical Observatory in Cape Town.

Giving Yourself Permission; especially for invisible illnessess

Written by Sophia Frentz
The most important thing I’ve ever learned how to do is to give myself permission.
If you’re reading this, it’s likely you’re an overachiever, that you’ve pushed yourself to (and past) breaking point multiple times, and that you’re not very good at saying no. I understand; I’m all that and more when it comes to toxic relationships with work. I’m pretty sure the only reason I survived my honours year is that the sound the heaters made at night scared me so I had to go home regularly.

My Coping Mechanism

When it comes to being chronically ill the most important coping mechanism is to give yourself a break. I have had depression for most, if not all, of my life. My anxiety and other brain quirks rear their heads when I push myself too hard. I’m good at ignoring them and getting on with work. I’m also good at getting distracted and forgetting to eat for a week. Neither of these are positive traits. When I gave myself permission (to be sad, to be afraid, to take days off, to take care of myself), a few things happened.

What happened when I cut myself some slack?

I stopped getting so defensive when people asked me about it. I’m constantly afraid of disappointing people in authority, but once I give myself permission to put my health first and told people that, there was very little argument. The people around you often want to be supportive, but can’t take your situation into account until you say “I’m taking today off because otherwise I will lie on the floor and cry instead of doing work”.
Secondly, I got healthier, happier, and more productive. This may seem obvious, but the “don’t do work to do more work overall because you’re not as sick” equation isn’t one I totally get. When I am sad or stressed, my go-to is to throw myself into work and yes, obviously that isn’t healthy or productive, but I liked it. Treating myself the way I would treat a sick partner made me better at research and happier with my life.
I became more confident. The pressures of being a woman in science means we’re not “meant to” have emotions (see: Tim Hunt’s failed “joke”). By giving myself permission to be “feminine” in the sense that I have feelings meant I was being myself a lot more, which made me a more confident researcher. It also meant I wasn’t bottling anything up, so my mental illness let up a lot. It surprised me how much of my anxiety was tied up in the fear of how people would respond to who I was.

Acceptance, Asking for Help and Healing

It also became easier to ask for help - I wasn’t hiding my mental illness any more, or pretending it was a “blessing in disguise” (I went through a few weird stages of relating to my mental health). Rather, I was allowing myself to have it and in the same step letting myself not be superhuman. I still don’t quite get along with the term “disability” but a fully healthy person probably couldn’t do what I push myself to try, so giving myself permission means taking a breath and not getting frustrated with my limitations. This resulted in me both thinking about my mental illness as an illness, and initiated getting on medication, which has been one of the best choices I’ve made.

Giving myself permission was instrumental when healing from trauma. At a recent talk about the barriers women in science face, a panel I was on was asked how we dealt with our personal barriers. I said that I cry a lot.  Allowing myself to cry, be angry, and to experience the full spectrum of human emotion has been invaluable. It has contributed to my growth as a human and as a scientist and has facilitated managing my illness while studying and working. 10/10 would recommend.

About the Author

Sophia Frentz is a PhD student in Genetics at the University of Melbourne with a fun cocktail of mental health issues, predominantly depression. She's learned a lot of lessons along the way but still struggles with giving herself a break.

Taking medical Leave: What I would tell myself now

Written by Stephanie
Let me start by saying I have no professional qualifications whatsoever to give anyone advice as to making a decision about taking medical leave. So I won’t. What I will do is tell you what I would have told myself when I was faced with this very decision in my own career, not so long ago.
First, here’s the brief backstory of how I found myself at the point of medical leave.
I was in the second year of my PhD. Anyone from the outside looking in would have said things were going very well. I had completed and passed my qualifying exam (called various things in different country contexts, but essentially the big exam in which you defend your research proposal). This meant I had the green light to go ahead and actually start doing the research I planned for so long and was excited about. I had publications in the works and a slew of upcoming conferences. I was working as a teaching assistant for a course on a subject matter I loved.
But one morning a disastrous thought floated through my head and it was downhill from there. I didn’t know what was happening at the time, but later was diagnosed with obsessive-compulsive disorder, or OCD. You can read more about my experience here: https://thesecretillness.com/2015/09/01/stephanie-33-ontario-canada/. All this to say, I reached a point where I was pretty much debilitated, but I was actually able to keep up with work (for a while), and even still do it well. I think that’s one of our best guises in academia—we can keep up appearances and sustain unhealthy practices dressed up as success—but that’s another story. I probably could have kept plugging away like this, miserably, for some time. But I realized that if I were to actually get better, I needed to dedicate my attention and energy to treatment. Treatment alone needed to be my priority. This could not happen in the (off)balance of my PhD life. Of course, knowing what you need to do and actually doing it are two different things and I wrestled with the decision to a medical leave of absence from my PhD program. In the end I took a 4-month leave and it was the best decision of my life.
Looking back now, here are a few things I would have told myself at that difficult moment in time that might have eased my angst about taking the leap into medical leave.

If you can’t be happy and healthy enough to enjoy your professional success, it’s just not worth it.

Sure, in academia there are tough moments when we all grin and bear it and our work-life balance may get temporarily out of whack. But that’s not what I’m talking about here. When I was in the deepest, darkest grips of my OCD, I received the incredible news that I had been awarded an extremely competitive multi-year federal doctoral research award. This was something I had worked so hard for. This was an achievement that could not only step up my career trajectory, but it would make my life so much easier for the next few years. My funding was secure. No more applying for grants and the award included money for research expenses, meaning no more conferences out of my own pocket! When I got this news, I should have been jumping for joy. Instead, it was like…thud. In fact, it almost made me feel worse. I felt like I didn’t deserve it. I was so consumed by the doom of my OCD fears I could not even enjoy and savour this moment of success. And we all know that these can be few and far between in academia! That’s when I knew how far gone I was—that I couldn’t take pleasure in an accomplishment that I had worked so hard for and that was so important to me. It was at that point that I knew I could not continue to just push ahead in my PhD. I had to get well again or there was no point in continuing. If I couldn’t take pleasure in such an achievement, what was I doing in this PhD?

Things can and will wait.

Academic timelines are brutal. Often everything has a sense of urgency. We are an overworked bunch, for sure. The truth is 4 months, 1 year, whatever it is, will not make that much of a difference, if any, in the long run and the investment in your health will pay off with much greater returns. Yes, I’m scheduled now to finish my PhD 4 months later than I would have if I had been healthy. But the reality for me is that if I hadn’t taken leave for treatment I may not have finished at all and now that I am back to work, I can tell you that the leave did not have a significant impact on my trajectory. There were no critical opportunities in that time that I missed out on—even if there were, I know there would have been others in the future. All of the publications I had in the works still made their way out the door. My career went on.

Medical leave is not time off.

As academics we are notorious for not giving ourselves a break, and when we do we’re often ridden with guilt that we should be working but it is important to remember that medical leave is not time off. It is not a break. Medical leave has an objective—and that is to improve and attend to your health, whatever your needs may be. For me, it provided me the dedicated time I needed to focus on treatment. I was finally able to see a psychiatrist for assessment and diagnosis. I had the time I needed to read and educate myself about my condition. And the kind of treatment I underwent (ironically!) had plenty of homework. Whether your condition is physical or psychological, it is important to remember that the purpose of medical leave is to get better. And that is not something we should allow ourselves feel guilty about!

Don’t half-ass it.

For a time, I toyed with the idea of not taking a formal leave of absence and just sort of “taking it easy” over the summer. But thankfully a wise mentor said to me, “I know you, and you won’t stop working or feel like you should be working if you don’t take a formal leave” and she was right. I can see now that I would not have properly prioritized my treatment if I didn’t make it formal. Maybe this is also a by-product of our academic formalities and habit self-induced guilt—formalizing my leave gave it the legitimacy I needed to allow myself to prioritize it. As an academic I was so used to giving 110% to everything, but I almost thought about giving myself a half-assed leave!

Don’t let the red tape scare you.

There is paperwork but it is doable and you might have to be your own advocate to navigate some of it or perhaps you have a supervisor or partner who can help. In my case, I did have to do some manoeuvring through the bureaucracy, and this was not without some stress and uncertainty. For example, my university initially told me they would withhold my funding during my leave. But I reviewed the policies of the funding agency granting my scholarship and learned they actually had policy for paid medical leave, which superseded my university’s policy. I then had to present this information back to my university. I also had to request leave both from my university and from the granting agency. In the end, it all got sorted out and my university was actually very supportive, which I give them a lot of credit for. All this to say, don’t let any red tape deter you. It’s just part and parcel of the ridiculousness of some university bureaucracies. And as academics we’re used to that.

It’s nobody’s business if you don’t want it to be.

Yes, you need to communicate with your supervisor and the appropriate administration. But actually, very few people need to know, if at all, that you are taking medical leave. And really no one other than probably one high-level administrator who actually receives the confidential note from your doctor needs to know the reason for your leave. I was very open with some people about my leave, and didn’t even bother telling others. You should not feel pressure to disclose anything you’re not comfortable with.
I can tell you in no uncertain terms now that if I didn’t take leave and treat my OCD I may have left academia altogether. This realization helped me to cement a new-found commitment to put my wellness first. Everything else stems from that. I’m pleased to say that having returned to my PhD post-treatment, I’ve been able to more than simply re-connect with the passion for my research that brought me there in the first place—I’ve been able to experience what it’s like to be healthy AND pursue a PhD I’m passionate about. That’s a powerful combination. I have more passion to go around. I take pleasure in discovery. And I even enjoy some of my successes. I now engage with my career on my terms. And those terms prioritize my OCD recovery and living well.

About me

Stephanie is a PhD Candidate at a University in Ontario.

Illness in the Ivory Tower: Coping with chronic illness in academia

Written by Scott Elias 
I have spent my whole adult life in Academia – the kind of person who just fell in love with university life as an undergraduate, and have stuck around this stimulating environment ever since. Since I began my ungraduated studies in 1972, that makes 44 years, including eight as a student, 20 as a professional researcher, and 16 as a lecturer. My health started to break down in 1986, and I was diagnosed with ulcerative colitis. I had my entire large intestine removed in 1991, which should have dealt with the colitis, except that new inflammation developed in my small intestine, so I was re-diagnosed with Crohn’s disease. I have lived with an ileostomy for 25 years, and the hole in my abdominal wall that this caused has torn, necessitating several parastomal hernia operations (I’m facing another one in a few weeks).
So that’s my tale of woe, in most of its gory details. I thought you needed to know that, so that you could appreciate how I have been able to cope with my problems in an academic setting. 

Much of my research involves field work in remote regions of Alaska. This presents challenges for someone wearing a stoma bag, but I have managed to cope pretty well, all things considered. Ostomy bags have an adhesive to they stick to your skin. In the 1990s, this adhesive material was rather heat-sensitive. I found this out the hard way when I was doing fieldwork on the North Slope of Alaska, about 1000 km from the nearest source of replacement bags. I had foolishly left my stoma supplies in the truck (boot) of a rental car, and they got over-heated on the long, two-day trip north from Fairbanks. I managed to get a few days of fieldwork done, but then ran out of serviceable stoma bags.  I made it back to Fairbanks before the last one leaked. I do not recommend 1000 km of driving on unpaved roads, especially all in one day, but it’s amazing what you can do when you must.
One of the most difficult aspects of fieldwork for me is simply finding the energy to carry out the necessary tasks. Crohn’s is an auto-immune disease, and it drains the body of energy, especially during flare-ups of the disease. When this happens, you simply have to take care of yourself: get extra rest, shorten the work day, and ‘look out for number one.’  I have a colleague with whom I share another auto-immune disease – ankylosing spondylitis. He has had to learn the hard way that when he pushes himself doing fieldwork as he used to do before he got AS, he just crashes - sometimes ending up in a hospital. I sympathize, because field work is very intellectually stimulating. It scratches a deep itch for Quaternary scientists, who like to dig through dirt, find precious samples, and bag them up for transport back to the laboratory. But, in the end, I have had to learn to delegate much of this to postgraduate students. I direct where they dig and where they take the samples, while I take pictures and write sample bag labels.
Work at the university is much easier to deal with. My biggest hiatus from teaching came last academic year, when the surgical incision from a parastomal hernia repair in January (2015) just refused to heal properly, and kept getting infected. I managed to teach nearly all of my third-year course last spring, although sometimes this meant getting out of bed, getting dressed, my wife taking me to the college where I delivered a one-hour lecture and went straight home to bed again. All credit goes to my departmental colleagues who took on extra teaching for me, and to my head of department, who did a great job of juggling things around to make it all work.

I think the key to making such things work is open, honest communication. When I am having difficulties fulfilling my duties because of my medical conditions, I talk to the people who will be affected by it.  I have dealt with six different heads of department during my career at Royal Holloway, and they have all been sympathetic and helpful. I used to lead an undergraduate field trip for physical geography students. This is a physically demanding week-long job. I was able to cope with the stresses back in the early 2000s, but I cannot cope at that level any more. Again, my head of department found a less demanding role for me: academic coordinator of a local field trip that is run by a colleague. So there are ways around obstacles such as these, but the key is advanced planning and lots of communication. When I first had the ileostomy, I read a book entitled ‘Never Apologize, Always Explain’ by Patricia Stout Skilken. The book’s title explains her philosophy about having an ileostomy.  I believe she has the right idea, because when I have explained my situation to colleagues, we have found solutions to the problems. I encourage everyone in Academia who has a chronic illness to be open and honest about it. Believe  me, it works much better that way!

About the Author

Scott Elias is a Professor of Quaternary science at Royal Holloway, University of London. His main research interest lies in the reconstruction of past environments, using insect fossil evidence.

Live in the Now - Some Strategies to Tackle Academia with Chron's Disease

Written by Katharina Spiel 
I am an overachiever and have Chron's. Both things that are more or less affecting my life. I love to be in academia and back in 2008 I started my second bachelor already with the goal of being in academia as long as possible.  My first really bad episode of Chron's came in 2009. I struggled managing class attendance and basically fell back by a year at some point. However, I learnt to deal with things my way and am now on the path to a PhD even if it is an even rockier path than I thought it would be. Here, I share some strategies that seemed to work for me. They are in no way complete and are partly intertwined with other conditions that I deal with in different ways.  You'll find some tips that might or might not work for you and might or might not work for certain conditions. I'm happy to learn more about others' approaches and what they have learned as well, so please do contact me at katta@chronicallyacademic.org.

Be radically open about it - if you can

A first principle that I have established with my Chron's is that I'm radically open about it. That means whenever someone is asking what is up, I'm explaining that I'm in an episode and what that means. For some people, that is hard to take in.  Let's face it, there's some 'yuck factor' when you hear about it the first time and there is a taboo about bodily functions in middle European societies. It's also worth it for me every time someone tells me "I just got diagnosed with an inflammatory bowel disease and knowing that you have it to helped me come to grips with it and tell at least someone about it", or even just "having heard you talk about your ileostomy made it possible to bring up the issue with my grandfather and make sure he knows that there is someone to talk to". Being radically open about it is my contribution to a normalising it, because when I can say that I'm having an episode and people know its connected to many bathroom trips and an overall exhaustion, I get personally more of an understanding, but in the end others don't have to go through explaining what it means.  That approach is kind of difficult to do though, because people can't help their initial yuck reactions when you first tell them. So it's not for everyone (and shouldn't be expected from everyone).

Negotiate the possibility for distance work from home

I made sure that - even though that is technically intended for parents - I could work from home at least partly when I have episodes.  My contract now allows that I can flexibly stay at home and work from there (if my direct boss agrees, which they always do, to my luck).  However, that also means that I structure my tasks constantly on whether I can do that in the home or whether it requires access to office resources. And I always try to have some tasks on my "can be done from home" list.  There is also a set of essential books or papers, that I drag around and change on a weekly basis, so that when I, for example, write papers, I can do so at either place.  Being that organised allows me to relax and judge without work stress whether I have enough spoons to go to work, enough to work from home or should call in sick.  That extra option in-between is perfect for me as a large amount of sick days also stresses me tremendously.

Have hobbies outside of academia

 On the other hand, what helps me a lot is having hobbies.  Some of them are active (like Roller Derby), so they are really only an option outside of episodes, when I have enough energy.  I have found though that sport helps me be relaxed more in general and made me watch my food with more purpose, which combined leads to fewer episodes. This is sometimes not an option and I'm aware that I am privileged in that I can do this now.  There have been times when I couldn't pick up a sport at all because episodes were coming in such quick succession.  Another hobby of mine doesn't require me to be active or alert, but rather just occupies me; crafting and in there mostly knitting, so I'll concentrate on that.  The great thing about knitting is that these days I can mostly do it without paying too much attention, especially with large but not very involved projects. These get mostly done during my sick days. But when I come out of an episode and see that I got a bunch of centimetres made of my skirt, I at least feel like it wasn't a complete waste of time even though I didn't have the wherewithal to go to work or do anything cognitively challenging because I was so exhausted. 

Keep your goals in sight

Now, I don't want to claim that it doesn't suck royally from time to time, when there is this conference you wanted to go to and you can't on short notice, causing stress for you and a replacement and making everything worse in the meanwhile.  However, I try to take these set backs and acknowledge them. By that I mean I realise they are there, evaluate their impact and reassess the next steps towards my goal.  For example, if I wanted to attend a conference, because of the community and exposure, I assess whether another conference could do that as well and/or when the next conference is coming up and how my time schedule has to change to accommodate this. That way, I never loose sight of my goal because of obstacles in-between.

How to get your foot in the (lab) door - a subjective guide

Written by Maria Niedernhuber
painting of a brain
"Hypophyse" by Inga Scharf da Silva (20x20cm, mixed media, 2010)
When you apply for an entry-level job (e.g., research assistant, small student projects) in a lab, first go to a paper search engine (e.g., to google scholar or PubMed), or to the publication section of the lab’s website and read their latest publications. Sign up for field-specific email lists and facebook groups (for me, this would be, e.g., SPM list, multisensory list, ISCON) and watch out for project ads.
If you are planning to apply to a small lab, first send your preferred professor a short email with your background (i.e., your field of study, your specialization, your general interest, useful skills like Matlab or Python). Be polite, friendly and positive. Then suggest some follow up studies based on a recent paper and ask some intelligent questions about their research. (Good) professors do not want you to brag about how great you are (i.e., your brilliant grades are less relevant), you need to show that you really want to do science and prove you can do it. Show your professor that you would like to contribute to the larger vision of the lab, and how you could do it. Read your professor’s blog and watch his talks on youtube, because a talk makes it easier to grasp the vision of a scientist than a lab website. Take every opportunity to attend seminars, lectures, talks and go to the socializing events afterwards. If you want to get a foot in the door, talk to at least around 100 scientists (rough estimate). Talk to research assistants, talk to PhD students, talk to postdocs. As a disabled scientist, networking is twice as important for you than for anyone else. It is very important to get along personally and find trustworthy people to work with. Do not use people when networking in science. Please do not talk to people with the idea in mind that you want something from them, because this is disrespectful. Personally, I believe that, in all fields of life, the connections we have with others are perhaps the most precious thing we have. This counts for everyone equally, but especially when you share a passion, which in my case is behavioural neuroscience. We should treat people we meet not with the idea in mind to foster our professional network or anything, but as the precious person they are, who you share a passion with. 
If you are planning to apply to a larger lab, it is often best not to email the professor, but one of his postdocs or PhD students (although the latter might be confused about what you want from them). This has two advantages: First of all, postdocs and PhD students receive a lot less offers for contact than your professor, who will never reply to all the emails asking for jobs he will get because then he would not have time to do science anymore. Second, the postdocs and the PhD students are the ones actually doing the research. Your principal investigator might be selling his science to you (e.g., trying to get you to run a hopeless experiment by saying “It is almost significant, we just need to increase the sample size” etc. Generally, your principal investigator will rather give you hopeless experiments than his PhD student, because it does not matter if you fail in your experiment as a MSc student or research assistant or project intern, you will be able to learn a lot and to write up your thesis. As a PhD student, you better don’t fail). The PhD student and the postdoc might give you a more honest perspective on what current data show and whether they think it is publishable. Your initial work in the lab is some type of trade: The senior scientist will train you and you will work for him probably for free or little money (- obviously, this is horrible. Ask your principal investigator whether he would support you to apply to small foundations funding student research projects. If your principal investigator does not want to support you, do not go to this lab). 
When you look up the latest publications of a lab before emailing a professor or postdoc, keep in mind that, in many cases, the lab will not be researching exactly these topics anymore, because it takes a while to publish a paper and new projects have emerged meanwhile. Do not expect that the lab will let you do what you suggested in your email just because they invited you. Your suggestions for new experiments based on previous publications only serve to show your potential new lab that you have the capability of structurally thinking about scientific problems. It is extremely difficult for a beginner to figure out what a lab which seems interesting actually wants,  unless you are already in there. If you would like to apply for a PhD there, you need to make sure that the experiments you suggest to your supervisor match his current grants and the best way to figure that out is to talk to current lab members about what the lab is up to. You can also start following potential supervisors on twitter to see what they are up to. Twitter is a very low-threshold way to engage in scientific discussions, and a lot less frightening than to talk to eminent scientists at a workshop. To follow scientists whose work you are interested in and twitter interesting follow up questions is a good idea. 
As a scientist with a disability or chronic disease, the biggest mistake you can make when applying for an entry-level job is to put your disease or disability before the science. When I tried to enter labs during my BSc degree in Tübingen, I did exactly that – I was worried no one would take me, and therefore, I wrote extensively about how I was sure I could manage to put up with lab life. In other words, I was stupid. Obviously, no one knew what I was talking about. In the first place, you are (or would like to become) a scientist, so put the science before anything else. You come to a lab because you want to do science. Therefore, you come to discuss data, theories and new ideas and in the first place nothing but that. It makes a lot of sense for your professor to pay attention to previous experience, but if your professor pays too much attention to bling bling stuff on your CV (e.g., coming from a prestigious university), this is a bad sign.
Everyone tells you to be passionate. Your principal investigator, however, will not tell you to be passionate. She will tell you to 1. do you job and 2. do it fast and reliably, and 3. without a lot of drama. I am personally very driven and I came to the conclusion that you fare better as a scientist being pragmatic and studying science as a “craft”. Too much passion can remove you from science as well (e.g., I was once broken-hearted because I realised I could not research a certain topic of interest – this almost cost me my career because I did not look for alternative options early enough). Sometimes, passion helps you to last in tough times as a scientist (e.g., the tough times which probably brought you to this website). 
If you are in a position to decide whether disclose your disability or disease, and you decide to do so, it might best to do it quickly (i.e., before looking for a new flat next to your new institute). If they do not want to take you because they think you cannot do your job due to your disability, you do not want to be there. Such people will be a hassle for you and you are better off not wasting your time with them. You can be certain that they will not tell you that they did not take you on because of your disability, they will tell you something else. Your principal investigator’s reassurance that he will accommodate your disability or chronic disease does not count anything, until you see that he does it. 
In some cases, it might also be a doable strategy to wait until your principal investigator sees that your work is good and tell him when you feel comfortable enough. It lies in the interest of your principal investigator 1. to take on junior staff who excel as a scientist, because they want their lab to be successful and 2. to take on junior staff who do not take up a lot of time, because principal investigators are busy. Remember that principal investigators want you to 1. do your job, 2. do it quickly, 3. do it without any drama. Your principal investigator might also just not care about you as a person, but more about you as a “work horse”, and think that you take up a lot of time because you are disabled (- unlike popular belief, this is not the default status, some principal investigators indeed believe in making young scientists grow and strive). If you can, first show that all their fears are unjustified, then talk about your disability, if it makes you feel better. Be careful: I have come across scientists who first did a good job and their principal investigators were satisfied. When they disclosed their disability and/or chronic disease, they were bullied out of their positions or not promoted because “they might not be able to put up with the stress associated with such a position”. You are very unlikely to figure out whether this happens to you, or not. Sometimes, senior staff will tell you in person, or others, that they “did not put you forward for position xyz, because you cannot put up with stress due to your disability.”, i.e. because they really mean the discriminating things they say. Especially for prestigious positions with many applicants, the selection panel will be happy about any reason to remove an application from the pile of applications to consider. Doubts whether you are healthy enough to put up with your job might possibly constitute one such reason, and you have no way of knowing.
My advice to you is:
As a disabled scientist, you cannot afford to be in the lab of a principal investigator who is annoying and has an inflated ego more than anyone else. How do you avoid such labs? When a professor hires you and you had a job in science before, they will often call the person you worked with before to get an impression of what it is like to work with you. As a student, you should do the same: Get in touch with people who work for or previously worked for your professor (- you can tell this from your professor’s co-authors lists on their publications). For example, before I went to the interview which got me my PhD position, I called the PhD student who only had a second authored paper in Frontiers with my supervisor (normally not a good sign). She said that her problem was that the business of science was not for her, and my supervisor was probably the best supervisor one could get in the universe. Once you receive an offer, or during the process talk to 1. someone who is in the lab. However, you don’t just want to ask the students you are being introduced to when you visit the lab, because your principal investigator’s selection of who you talk to is not unbiased. I am pretty sure that you will not talk to the person your principal investigator might bully. In other words: If you want to know whether North Korea is a dictatorship, you should not rely on Kim Jong Un’s lifeguards for an opinion. That is why you 2. should try to talk to a handful of people who left the lab. Ask them on the phone whether they know of someone who was unhappy in the lab, and try to talk to them as well. The people you talk to about your potential new host lab are unlikely to be disabled as well and might not be able to advice you on that. My personal observation is that scientists who are generally friendly and good mentors are also happy to host a disabled scientist in the lab, so you can take non-disabled staff’s general satisfaction in the lab as an indicator of whether a scientist can host you with a disability and/or chronic disease. Take into account that people you ask for an impression of a principal investigator have their own interests and might be difficult themselves. When you talk to them, ask a few general questions about them (“Why did you choose this lab?” What brought you into science?”). I tend to disqualify everyone as a reasonable source of judgment who does not seem to care about the science directly, saying things like “Oh, it’s so good to have Oxford on the paper”, “It looks so good on our CVs to do abc.”, or brag about their grades in their BSc, and who says profoundly negative and unjustified things about colleagues on a personal level, e.g., “she is a bitch”, “he is really just a prick and I don’t like his personality”. Some junior scientists will hesitate to criticize senior staff directly, so pay attention to hints like “She is very demanding.”, “She is very critical.”, “If you publish any less than three publications in a year, you don’t impress her much.”, “If you work less than 12 hours, you don’t impress her much.”.
You are most likely to work without being paid when you enter a lab for the first time, and training is your so you should make sure that you do not get into a lab which exploits your workforce by making you work extensive hours and skip your weekends. “Big” or, worse, “upcoming” principal investigators with inflated egos might seem very attractive at a first glance, but turn out to be very difficult to work with. The exploitation of your workforce keeps their labs going, so do not sell yourself under value, blinded by the name of a prestigious university or a famous group leader.
Do not go to a “we work long hours”/”we brag about not having a life” lab. First of all, they do not actually work these crazy hours. My guess is that the illusion of the 80-hours week comes from not having fixed working hours. Many scientists just about always do science if they are not busy taking care of their families (frequent moving is a greater obstacle to having a family in science than long working hours), or if they are not busy meeting friends, and busy doing other things. Many scientists who claim to work non-stop spend half a day on twitter, or facebook, or with their buddies in the institute’s gossip kitchen. This means that, indeed, many scientists are always busy doing science – if they are not just busy doing something else. Do you own calculus, and see that, in most cases, their time spent with work does not add up to 80 hours a week. Obviously, there are exceptions to the rule, but you do not want to invest in these exceptions, because they are unlikely to live long, and you want to build long-lasting mentoring relationships. Anyone else I know who actually works that long spends most of his time removing errors they did during data processing when having worked despite having been tired and not concentrated (I have been there, you can learn from my mistakes). I would even go so far as to say that I would doubt the quality of the science done in a lab with a “long hours culture” because stressed staff make more mistakes (see “reproducibility crisis in psychology and life science” etc.). A “long work hours” lab is a no-go. Good science is slow science. Do not go to labs in which principal investigators brag about how many hours they work. These working habits are bad for anyone’s health, and you should take care of your health as an academic with a disability and/or chronic disease. Unlike popular belief, you do not need to submit yourself to such crazy work ethics, and by submitting yourself to such crazy work ethics, you support academic slavery. The time you need to finish a task tends to expand if you have more time available, and you will not get more done by working longer. Moreover, do not go to a lab in which supervisors claim to recognize that working long hours is bad for you, but then continue to brag about how many hours they work themselves despite knowing it better. In other words: If a bird shits into your principal investigator’s brain, it is his own fault. Same for your colleagues. Do not pay attention to your colleague’s career, and your colleague’s bragging about his working hours, concentrate on your own career. Take your time to find your own style.
Try out your professor before you commit to anything (- your professor will do the same): Ideally, you need to have undergone the cycle of a) thinking of an experiment and discussing how it is done, b) running the experiment c) analysing the data d) writing up at least once. If, after a test phase of a couple of months, your professor does not want to give you the chance of doing these things, maybe it is best to look for another lab. To visit the lab for a couple of months before you get settled there gives you the opportunity to 1. arrange the accommodations you might need due to your condition; 2. figure out whether you can establish a functioning working relationship with your supervisors. If you decide that you do not like the lab or that it is difficult to receive the accommodation you need, it makes it easier to leave the lab. Many scientists are passionate mentors – make sure you meet these ones, and not the others! There will be someone to give you opportunities. Be patient. 
Figure out whether your lab mates are alright, and socialize. Your lab mates can make your life just as miserable as your principal investigator can (or maybe a bit less). If you struggle with your principal investigator, it might be good to have someone in the lab to talk to, or to back you up (but do not expect too much from them, because there is conflict of interest).
Look for a mentor from the same university, who is not in your lab. Same reason than above – you need allies when you feel discriminated against by your group leader or postdoc or anyone else in your lab. Look for a mentor from a different field than yours. It might be wise to have someone to turn to (where there is no conflict of interest with your principal investigator), because they have an unbiased view on what is happening. Knit your net as dense as possible, because if you fall, you want to fall safely.
Socialize with others with the same health problems and with others with different health problems. Do not let them drag you down when they feel bad, but support them when they need it. Think solution-oriented, not disease-oriented. If a certain solution works for your mate, the same solution might also work for you (independent of your disease).
Research sources of funding and suggest them to your principal investigator, sounding as confident as if you had already obtained the cash for your position. You are more likely to get your supervisor’s support, if you have funding (surprise!). You are more likely to get funding if you have your supervisor’s support (surprise!). This is the chicken-egg-problem of funding academics. To resolve this problem, it is best to suggest some sources of funding outside your university or institute to your potential supervisor and talk about these funding application with confidence, just as if you had already succeeded with finding funding (but without sounding arrogant, it is a blessing to be funded), so they feel you are a safe investment.
Perceive your funders as partners rather than wallets. I previously advised you to put the science first. However, this is not the only thing you need to keep in mind when doing science. You need to recognize that science is shaped by cash flows (i.e. funding bodies funding science, they are frequently also setting agendas, they decide whose work is “interesting” and who can pursue it) – whether you like it or not. Research your funders thoroughly and study how academic cash flows work. Your funders decided to fund science because they would like to enrich the world in some way (e.g., an old lady funding pain research due to a disease-inflicted family history, a foundation wanting to get different disciplines to talk etc.) and you are their means of achieving this. Think of your funders as someone who bets on you as their racing horse to have impact on the world. Find a funder who you share goals with (they will notice if you don’t, and you just waste their and your own time). Do not be offended if they do not take you because many funders have awkward constraints on their funding (e.g., this year primarily funding people with a STEM background from Asia, etc.), so your success does not depend on your own scientific excellence, but on the applications of others and a good bit of luck. Many funders lack a scientific background in the science which you do, so take into account that you write your application for a general audience. You need to tell your funders a story about your research.
While principal investigators might be hesitant to take you on with a disability or chronic disease, a funding body awarding research fellowships or PhD scholarships is more likely to put your application forward to increase the diversity among the individuals funded by the organisation. If you have a mental health disorder, I would advise you only to say that you have a chronic health condition and are therefore a protected minority, but do not say which one (except if it shaped your biography and the story you would like to tell your funders). However, you are still at disadvantage, because, due to your disease, you might not have been able to gain as much lab experience as another person, and your funder is unlikely to take that into account. If that is the case for you, just show what you have and point out that, despite your disability and/or chronic disease, you managed to get as far as you got - it will compare better than you think. Funding bodies are only interested in your past because they use it as a cue to predict how well you will perform in the future. So when you apply for a scholarship, do not worry too much about side issues, e.g. the life time you lost due to a hospital stay and that you are much older than anyone, or some bad grades in your BSc degree - think of what you would like to do in the future and how you would contribute to the goals of your funders with this. For example, if you have been exposed to financial pressures due to your disability and/or chronic disease which caused your performance to deteriorate in some years, say that obtaining a certain scholarship might not expose you to financial pressures and you might be able to show your full potential. Funders are humans, too, and many will show understanding for disabilities and chronic diseases. 
Tell them that disabled scientists are persistent – or how else do you think we even got so far? As a disabled scientist, you have shown to be more persistent in pursuing your scientific and life goals in times of trouble. Persistence is the key skill of any scientist (over and above intelligence and other CV bling bling) because science is often frustrating and you will fail as a scientist if you simply give up when there is a problem or when things are getting rough. As disabled staff, it is easy to show your principal investigator that you have this skill – your mere presence in the lab is actually evidence enough.
Servus and all the best of luck for your career,

About the Author

Photo of Maria Niedernhuber I am a neuroscientist at the University of Cambridge working towards a PhD degree in psychology (with a MSc from University College London and a BSc from the University of Tübingen) and founding member of chronically academic. I am interested in how consciousness works and how this knowledge could be translated to aid neurorehabilitation.

The Importance of Support

Written by Hazel 
I was asked to write about coping strategies that I have used as a PhD student with a chronic illness.  I have had mixed experiences as someone who was diagnosed at the beginning of my 3rd year, which made my funding situation complicated but also left me struggling to adjust to my abilities being different.
  1. Accept the support that is available

    I disclosed to the Disability Service and my Department as soon as I had a diagnosis.  At my university in the UK you can disclose confidentially to the Disability Service if you do not want your Department to be made aware of your disability but in my case it was obvious I was ill so I decided it was to my advantage to make my supervisor aware of my condition.  I met with a disability advisor at my university who explained the sort of support available.  I had to provide a letter from my GP stating my diagnosis so that a needs assessment could be carried out at the local assessment centre.  The assessor was really kind and helpful and asked about how my disability affected my work and what help I needed.  At this point, despite being diagnosed with a chronic illness, I thought I would bounce back in a few months so I was reluctant to accept much help.  Several months later when I was really struggling I had to email my assessor and ask for further support which she approved and the university put in place. 
    My first coping strategy as a PhD student is to disclose to the Disability Service at your university and accept the support that is available to you.  For me that included daily taxis back to my house and a printer to allow me to work from home on the particularly bad days.  I was fortunate that a time came when my symptoms lessened and I could walk far enough to use public transport but if my health deteriorates in the future I wouldn’t hesitate to ask for further support.
  2. Find someone to talk to from within academia

    As part of my support package I got weekly mentoring with a specialist disability mentor at my university.  My mentor works with students with a wide range of conditions and from different disciplines.  She has helped me decide how to approach various issues with my supervisor and develop the skills to be productive in a short amount of time.  I suspect I would have quit my PhD without her support.
    My second coping strategy is to find someone you can talk to who understands disability and academia.  Maybe your university has a specialist disability mentor but if not I would suggest approaching the staff disability network or staff equality office and asking if they can connect you up with a mentor.
  3. Be clear and concise about adjustments

    Around 6 months after I got ill I asked to be referred to Occupational Health.  Many companies have an Occupational Health group who are responsible for everything from Display Screen Equipment assessments (i.e. making sure you are sitting properly at your desk) to ensuring staff travelling abroad get the right immunisations.  They will usually have a specialist GP whose job it is to report on the reasonable adjustments needed by staff in order to carry out their job.  Having a report from Occupational Health sent directly to my supervisor made it clear to him what I needed from the Department.
    My third coping strategy is to learn to be clear and concise about your needs.  You don’t need to disclose the exact nature of your disability every time, for example, that you book on to a course even though in my experience people will ask.  You are the expert on the adjustments you need not them so focus on politely stating your needs and don’t get drawn into justifying yourself.
  4. Hold on to your support network

    This might seem like a glib thing to say as I understand that some people find personal relationships difficult at the best of times but it is important.  When I had to reduce my working hours because of my health it was tempting to cut out everything else so that I could focus all of the energy that I had on my studies.  In reality you don’t get a PhD without making some sacrifices so my social life is a fraction of what it used to be but I have kept weekends as my own with one day for rest and laundry and one day for socialising.  The friends worth holding on to have adapted to my need to go out for lunch rather than dinner.  They understand that I can’t walk far or stand around in the cold for ages and that I might need a lie down after travelling to their house.  This small amount of balance between getting enough work done to succeed and socialising in order to be a functioning human being has kept me going through the worse periods of illness knowing that when the latest infection passes there are people who will be pleased to see me on my terms.  It also helps to stop me from being impulsive when I’m feeling isolated and bored which generally leads to doing far too much and feeling far too ill to work for several days.  Skype and FaceTime are also a great way of connecting with family and friends when you don’t have the energy to leave the house.
    My final coping mechanism is to regularly make time for socialising, or whatever it is that you find makes you happy and helps you process your thoughts and feelings.
 About the Author
Hazel believes that academia should become more diverse and that the institutions funding research need to review how they support individuals with disabilities and chronic illnesses who have the skills to become great researchers but who need reasonable adjustments and flexibility to achieve that goal.  Hazel became part of Chronically Academic to raise the profile of this community with a view to campaigning for changes to the culture in academia and the funding opportunities available.

Lessons from Writing a PhD with a Chronic Illness

Written by Amber Davis 

I wrote the first half of my PhD when I was healthy, or at least healthy enough to function ‘normally’. I suffered from low energy, and had a collection of intractable seemingly unrelated health issues pop up regularly, but they were manageable. With lots of self-care I was all right. That changed from one day to the next when the disease that had been lurking in the shadows decided it was on top and my health crashed spectacularly. I didn’t find out until over six years into it what that disease was: Lyme disease (Borreliose), a bacterial infection caused by a tick bite, as well as co-infections, that weaken the immune system and mess with every other bodily system you can think of. In my case it looks a lot like chronic fatigue syndrome or M.E. (I am aware of the controversies surrounding these labels and conditions. Not saying these are the same). Unfortunately: no cure, though there are things that can be done to improve, maybe even get to remission. In the meantime though, life goes on, which was the first thing I learned, even before my diagnosis, living with what I still hesitate to call a ‘chronic illness’. Where before my falling ill I might have a life crisis and I would lay low and it would solve itself with time and a bit of effort, no such luck this time: seems I would have to go on living with this massive part called health unresolved. After years of being too ill to do anything at all, let alone think about work, I decided I would try to finish my PhD. I had to go about it strategically, as there was not a drop of energy to waste. This is what I learned:
  1. Do You Really Want to Be in Academia?

    Living with a limiting health condition means having to be true to what you really want, as anything else no longer seems to work. There is far less leeway. Far less room for manoeuvre. That seemed to be very much the case for me, anyway. Having to deal with severe energy limitations, I noticed the only things I successfully managed were those that lit a spark. Finishing the PhD was not at all self-evident. To be honest, I didn’t much care about it for years: I had bigger fish to fry, namely trying to get my health back to a place where I would be able to enjoy life instead of enduring it! The PhD seemed insignificant in comparison. At some point, however, I realised I was still interested in my project, and figured I had nothing to lose. There was a chance I might manage (though I didn’t dare say this out loud) so why not try? Most importantly, when I decided to finish my PhD it was because I felt compelled to. That didn’t mean it was in any way an easy road, or that I didn’t have doubts about it - in many ways it was a bit of an insane plan - but I knew I wanted to give it a go, at least
    I believe the essential question to ask, when you are at a cross-roads with your health and work life in academia, is: “Do I want to be here at all? Do I want to be in academia?” That difficult question has to be answered before bothering with: “How am I going to manage?” Being ruthlessly honest about motives and circumstances, about whether an academic position adds to your being fulfilled, whether it is good for you, or whether it drains you further, and whether continuing down the same road is feasible, is required. Circumstances change: maybe academia was right for you at one point, but no longer is. Or conversely: maybe your health meant you had to drop out for a while, but has now improved to such a level that you will manage, and you find yourself longing to get back. Learning to distinguish when a ‘yes’ is a real, true yes, is very much a learnable skill. One way of knowing is to pay attention to how you feel about certain options: if an option such as finishing your PhD feels expansive, exciting, even if it may be daunting, that indicates a ‘yes’. If it makes you shut down, even though you want yourself to pursue it for reasons such as not wanting to be a ‘quitter’, feared loss of status etcetera not so. It is OK to quit, even if fellow academics are not likely to respond favourably to your doubts about pursuing an academic career. Similarly: don’t let anyone dissuade you from working in academia, or pursuing a project. Give yourself permission to make your own decisions.
  2. Prioritise Your Work and Do It Your Way

    For me staying in academia meant I had to find a way of working that wouldn’t exhaust me further. In practice that meant being strict about my work hours. In the morning I would work three hours, and that meant absolutely no interruptions. If I had energy left, I would also work an afternoon session. That way of working, of making the most of the energy I had by focusing in, worked very well. (It works well also if you have no energy limitations. Focus is everything.) But it meant a lot of boundary setting. No Internet surfing or picking up my phone during these hours. I made a point of switching everything off, including the Internet, which helped. I also started working in 45 minute intervals, further improving focus. Whereas before I wasted a lot of time in the twilight zone of distraction, those days had to be over for me to be able to function at a level to get my work done. These new work habits made a world of difference. A crucial aspect also was working for no longer than was sustainable. My old habit was to push past the fatigue, and to try to keep going no matter what, even if it was going nowhere. It took some courage to change that and indeed stop after what felt like not long at all. Saying: ‘this is enough for today’ can be daunting. Over the long run, though, I learnt to trust my new habits, and it got easier. It actually worked!
    Mentally a new habit I had to form was to not engage so much with the negativity mindset (this is never going to work, what if my work isn’t good enough, I’m never going to meet that deadline, oh this is so slooooooow, why am I even trying etc.) that often comes with academic work, even without the added obstacle of illness or exhaustion. The worry was such a strain. It didn’t seem to solve much, either! What if I could train myself to skip the worry part? Seems a bit outrageous, and certainly doesn’t conform to norm seen the general tendency towards suffering and self-flagellation in academia, but it might free up some energy! Worth a try. Meditation was my method of choice to learn to not stay stuck in worry. (Practice, not perfection, always.) It helped me make my worries manageable by teaching me to be me be far more aware of how I was spending my emotional energy. It also helped me learn to shift my focus of attention to more positive states or activities when my worries threatened to get the better of me. Another practice that helped was truly engaging with what I was doing. It is quite impossible to be focused - say on working on a chapter - and worrying about it simultaneously (though no doubt I may have managed at times). I tried to be more aware of my focus, both in terms of what I was doing, and what I was thinking. Mindfulness basically.
    The other, very practical, thing I needed was time. Although I did finish my PhD much faster than expected once I got back on track, when I was at my most unwell working was out of the question. I had to ask my department for extensions again and again. I believe I was the person with the longest history of sick leave in the entire institute ever! Which leads me to the next point:
  3. Ask for What You Need

    Depending on your disability, illness, or other obstacle, you may need to inform your department/ supervisor/ colleagues of your situation. Academia is an odd place: on the one hand it tolerates diversity rather well, and people tend to be friendly and open-minded, on the other it can be a wildly competitive place, increasingly so, where everyone is madly competing for limited resources. Ideally we would be able to discuss our health issues freely, if necessary. Yet one immense burden of having a chronic (invisible) illness or disability is not being heard, or understood. In less fortunate cases you may even be bullied or taken advantage of, or as was the case for me: somewhat neglected. At some universities (often the more prestigious ones) I can’t quite wrap my head around the level of machismo and politics. In most a lot depends on the influence and willingness of the person in front of you.
    I generally believe in being open about your condition to the extent that practical considerations require. More if you have someone you particularly trust. In my experience people tend to respond well to concrete requests which may help you function, and being pragmatic about your needs is extremely helpful. I probably don’t need to tell you that chronic illness or disability is often so far out for people - even those who wish you well and want to help - that they simply cannot imagine what you might need. If we have the need part figured out for ourselves, it helps tremendously. It is so important. And please do advocate for yourself! I know I felt shame because I could no longer keep up, but at one point I decided that if at all possible I would try to not bother with the shame and guilt and negative emotions as much (being unwell was burden enough, thanks!) and I would go for what I wanted and ask for what I needed, without them, if at all possible. It was a wise decision. Thanks to a supportive supervisor I got much needed extensions of my PhD programme, again and again. Even so, I had a plan B. I was well aware that completed PhDs still meant income for Dutch universities, so I considered potentially finishing my PhD at another university than where I’d started in Italy, if an extension would no longer be granted.
    When negotiating, be strategic in who you choose to talk to. Unfortunately some people don’t ‘get it’ until they get it, and they are best avoided. Even so, one person blocking your path doesn’t mean the end of the road. Friendly networks are important in academia and knowing people will open doors. So do try to invest in finding the right people to know and collaborate with. Above all: do not let yourself be diminished by clueless people. This is your life. They have no say in it. And they certainly have no say about your worth. Do not let them mess with your head. I feel strongly about this. Being unable to conform can be hard on our self-esteem. I notice I do much better when I give myself the benefit of the doubt. In fact, I believe this is what we owe ourselves. And what allows us to be not so ‘disabled’ at all!
End of story: I did finish my PhD and it was well received, as the best thesis of the department that year (let me brag: best of 34 political science PhDs). I also finished it well within the deadlines, to my own astonishment I must admit. I came a long way with a few small habit changes and a lot of persistence! After finishing, I decided to leave academia, and teach young academics what I had learned the hard way. I now coach PhD students and other academics, and run an online course to support wellbeing and productivity in the world of academia. Do get in touch with your questions or story if you think I might be able to help.

About the Author

Photo of Amber Davis Amber Davis is a political scientist and academic coach and holds a PhD from the European University Institute in Florence. She blogs at www.amberdavis.nl which also hosts the HappyPhD online course that will help you write your PhD (almost) effortlessly.