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.