You have MS

Written by Stephanie Zihms 

After 10 months of tingly arms & legs, a bout of optic neuritis, unexplained tiredness and brain fogs, as well as doubting my own sanity – I was finally diagnosed with MS (Multiple Sclerosis). Even though this was not entirely unexpected it was still a shock and at the same time a huge relief. My response turned out to be ‘full on research mode’. I searched the web high and low for information and anything related to MS – funnily enough my parents did the same – must be a family trait. Probably for a good month or so, I was in a haze of information, feelings, uncertainties, insecurities, strength – or to put it bluntly I was one big mess on the inside but very functional day-to-day.

After my family and some close friends, my supervisor was the next person I told, mostly because she was there when I had no clue what was going on and it just felt right to tell her. I also pretty quickly decided to tell HR because I wanted them to know in case things got worse unexpectedly. I recently came across this blog post from Heather on The Mighty. She also tweets as Dizzy the Donkey which is worth a follow. The first thing that struck me was that she decided not to tell people because of the fear of being judged – I had exactly the same fear of being judged or perceived as lazy, slacking or not working as hard, which was one of the reasons why I decided to be somewhat open at work about my MS diagnosis. I told close colleagues and office mates and others if it came up due to people noticing changes; most notably, I had to explain my new diet to my lunch club colleagues. This was followed by waves of "but if I admit that I have to change my working hours or ask for other adjustments, I would be considered not as good an academic". I have never really been a 24/7 academic and always valued my weekends and time off but this was never visible at work. Now, with adjusted hours, 1 day a week working from home and days where I looked like s*** it’s a bit more obvious that I’m not 100% fit all the time.

The first thing my supervisor told me was “now you have a reason to take care of yourself”, which is kind of sad because we all should take of ourselves in whatever form that happens. But for me this means I have to be more sensible about how I plan my work, how I set deadlines, what activities I agree to etc. To be fair, at the beginning that didn’t seem to be too big an issue. I agreed to work 1 day from home and adjust my hours as needed; on a good day work a bit more, on a bad day leave early. Outside of work, this meant changing my diet and exercise regime, as well as starting my day with a 10 minute stretch (which I actually manage most mornings).

It took a field trip in mid-February to realise that I have to treat a good day as a normal day and not work more. We went to a geological site that I was excited to show a visiting researcher from Brazil. I had been feeling great – diet and exercise seemed to be working so off we went. The day was very cold, windy and we ended up on site for 6 hours with only a break for lunch. That evening, I felt tired but not necessarily more than after similar days like this – however I couldn’t get any heat in my legs. In hindsight I now know this was a tell-tale sign that something was not right. I ended up off work for 2 days due to severe fatigue. Well done me! By Friday I started to feel better again and another week later I think I am fully back to “normal”. This was quite a big shock to my system and it really highlighted some other issues creeping up – particularly the realisation of "that’s it now – You have MS – life is not going to the same"! For a wee while it felt as if this meant Life is also going to be rubbish. This is, of course, not true but at that time it felt like it.

During these pretty shitty weeks of feeling super low, the counselling sessions really helped. These were offered to me from my employer after I told them about the diagnosis. It took me a while to go and I had to reach a low point where I didn't know what else to do to get me to go. I had my first session on 8th February, about 3 months after my diagnosis. I have now had 4 sessions. They have helped so much and I am glad that they were available to me from work because I had access quickly. HR set up the initial contact and told me to call them if and when I needed it – after calling them I had an appointment 3 days later. Since I did pick up the phone at a low point, this quick access was so important because the first 3 weeks in February were particularly difficult and if I had not had counselling, it could probably have been a lot worse. Unfortunately, I have to say that this, together with an occupational health assessment and reasonable adjustments, is all that my university offered – tick box requirements. There is a disability service but this is aimed at students, there is access to assistive technology – but this is not widely advertised – and again does not really help with the impact on mental health, feeling of belonging and emotional aspects of a recent diagnosis. Through contacts, I found out that there is a type of peer support group but this was not publicised in a way that I knew about it when I needed it. I also found out that we don’t have a working group for disabled or chronically ill staff or a representative on any working group related to staff. I don’t think this is ok and I want to make sure that members of staff that go through something similar in the future have these services available and are aware that they exist. This can only really happen through openness about my own diagnosis and a little bit of lobbying.

Through some existing connections at university I should be able to get some of these things rolling and I’m hoping to get more involved. A key factor in deciding to be open and get more involved has been the Chronically Academic network. This was one of the first forums or networks I joined and I felt very welcome and supported.

About the Author

Image of Stephanie on fieldwork
overlooking a rural landscape

Stephanie Zihms is currently working as a postdoc in Carbonate Geomechanics in the Institute of Petroleum Engineering at Heriot-Watt University. Her research tries to understand why rocks deform the way they do and what controls this deformation – crystal size, crystal shape, pore size or pore shape? Or is it the mineralogy or how the rocks formed in the first place? By deforming different rocks under different conditions in the lab she is trying to find some answers. This research and the findings are relevant for a range of subsurface processes like hydrocarbon extraction, geothermal energy production or Carbon Capture & Storage applications. Basically anytime a liquid or gas is put into the subsurface or extracted from the subsurface the conditions change and the rocks will response to this change – by understanding what controls this response within the rocks (grains , pores) we can predict the behaviour in the subsurface. Stephanie was diagnosed with MS in November 2016. To read more about her life as a Chronically Academic also check out her blog: stephaniezihms.wordpress.com.

PhD funding during illness: cancer, consequences & suggestions for change

Written by Claudia Pama

The last thing I wanted this blog post to become is some whining account of my personal experiences, but if you sense any of that while reading it, I sincerely apologise and greatly admire your perseverance if you make it to the end. At the same time, I really hope you do (make it to the end, that is), as it’s not about my experiences (which solely function as an example), but about changes that should be made to a system where PhD students who fall ill are currently being punished for doing so.

Brace yourself (admittedly, it's rather long, too).

The message that you have cancer is never easy to digest, and the timing is never right. I received mine on an evening in February 2015, while pressing my phone against my ear to identify the words my oncologist was uttering (‘I’m very sorry to bring the bad news’, ‘what stage is it?’, ‘we can’t tell, you will have an MRI to determine that’, ‘can it be terminal?’, ‘I’m sorry, we don’t know at this point’, and so on), as I was standing in a busy London street. Just a couple of weeks into my second lab rotation (part of the PhD programme I am currently enrolled in), I realised that the next months would require all my energy and organisational skills. Several doctor appointments, an MRI scan, discussions, decisions about my exact treatment and sketching a general action plan for the next weeks followed.

On the bright side, it turned out my cancer was an early stage, and I was able to receive a specific type of surgery (most likely not readily available to me back home). What’s more, I was positively shocked by all the support I was given from friends and those that didn't even know me that well – Cambridge felt like the best place to get cancer (or, more accurately, the least bad one). Largely because of this I managed to finish my rotation successfully, and arranged a period of medical intermission, starting on the day of my surgery (planning an intermission requires some effort, including the needed paperwork, medical letters and meetings with several people - while it’s no fun to do these things, most people were very supportive throughout this process).

In the chaos of arranging things and coping with the situation, I didn’t quite check the regulations of my funding bodies in too much detail (not that I had much choice anyway; the treatment plan was set up in Cambridge and I needed to get time out for treatment and recovery). Little did I know that, after politely informing them about my medical intermission, one* would reply by stating that this would affect my maintenance payment, and that any maintenance paid during this period was officially to be refunded. This was followed by some options, which effectively included multiple scenarios of the same one (pay back now, pay back later, pay half of it now, half of it later, don’t receive funding during a subsequent term, etc.), ending with the wonderfully paradoxical comment ‘the choice is yours’.

After more e-mail conversations (during which I explained my situation, stressing that my treatment had to be completed in Cambridge and I was fully dependent on my scholarships, in reply hearing that unfortunately no hardship or extension funding was available either), we eventually came to an ‘agreement’: instead of paying back my maintenance stipend during my intermission (which I couldn’t afford to do), I will be left without funding for the last term of my PhD (I still need to find a suitable solution). Of all my ‘choices’, this seemed to be the least bad one. As you can imagine, discussions like these are the last kind you want to engage in while being stressed about your health, work, finances and future, but unfortunately they seem to be more common than we would want them to be.

During the intermission period, I couldn’t wait to start my planned PhD experiments as soon as I was fully recovered. Although I knew that something wasn’t quite right about the way my funding was arranged, I didn’t really know anyone in a similar position and felt slightly powerless as an individual. Yet here comes the beauty of our digital era: one day my friend Edwin (a PhD student at the University of Oxford) wrote this blog post about his experiences, and I messaged him immediately. It turned out that he was in touch with Stella, who is doing a PhD at University College London and has just been through treatment herself. It made us realise that we’re not the only ones going through this, and what’s more, we’ve either experienced issues with funding bodies ourselves, or heard stories of others going through something similar. That’s when we decided to write a correspondence letter to Nature, published just over two weeks ago.

The question arises about what would be a reasonable solution. There is wide heterogeneity amongst funding bodies when it comes to medical leave; some fund part of it, some none. In our correspondence we suggest that PhD students should have the same rights as academic staff when it comes to medical leave (e.g. six months of paid sick leave) – in the end they essentially work like full time employees, so why shouldn’t they be treated as such? Alternatives already exist, one example being the Marie Skłodowska-Curie programmes for PhD students. The European Commission requires that grantees are offered a staff contract, thereby protecting their rights to sick leave. We propose that other UK funding bodies should also provide such basic rights with their grants, at the very least including a decent sick leave arrangement.

One final thing – if you are one of the unlucky ones going through something similar right now: don’t despair. Ask everyone for support; your supervisor, boss, tutor, mentor, College, friends – there might be help available that you are not aware of until you ask. Each problem has a solution, and chances are you will find it when you keep searching. In the same way, we hope that by raising awareness, changes will be made to the current situation, where PhD students who fall ill are receiving a double whammy. (Now, dear reader, you truly deserve my endless admiration by making it to the end of this blog post: thank you!).

*I won’t mention the exact funding bodies involved, and I am grateful for receiving funding from all my sources in order to complete a PhD degree. However, it’s essential to give specific examples like this one to raise awareness of the issue.

About the Author

Claudia Pama is a second year PhD student at the University of Cambridge.

An Undergraduate Perspective on Recovery

Written by Krishna Udaiwal

In the winter semester of my second year undergrad for philosophy/biology major, I underwent a period of uncontrolled pressure and a breaking point leading to severe depression & social anxiety, as well as cancelling the entire semester before the exams. It was a horrible experience, one which I wouldn’t prescribe to my worst enemies. During the worst of it, there was a breakdown event, loss of interest, severe self-deprecation and quarantine-like isolation. Fortunately, I took the seemingly irrational, but courageous, step to book an appointment with a doctor. Unfortunately, it was over 3 weeks after the initial month of agonizing despair, where hounding social anxiety tried to convince me to cancel the appointment (luckily, I hated using the phone or going outside even more). My decision wasn’t irrational and was the best course of action possible. It was the lowest consecutive time for me, where hearsay cases of micromanaging students ‘faking’ mental health conditions for advantage/grades (in my opinion displaced competitiveness from instructors) and my own lack of self-confidence/ineptitude initially deferred me from making that appointment. When learning of diseases & conditions the first lesson is to never self-diagnose, which is equally true for self-un-diagnosing mental health; you inherently cannot make an accurate judgment. It is essential to speak with a trustworthy source.

Once I spoke to the doctor (or General Practitioner, GP, in mental health lingo) it was obvious to them I needed medical help due to physical & mental signs, although some may not present any signs at all. The signs at my stage were tremors (without any stimulants), inability to look directly at someone, muffled speech, inability to focus or calm myself (these are self-observations post facto). GPs are, as they ought be, limited in declaring specific diagnosis & treatments in a single visit (for long-term diagnoses) as there may be false-positive cases (like hearsay cases) as mentioned before. As such, I was referred to a psychiatrist for in-depth analysis of my condition. For the immediate alleviation of my symptoms, I was conveyor-ed through a passive regiment of steps to recovery including counsellor visits to mitigate immediate risk and the psychiatrist diagnosis for long-term specific severity analysis. In addition, on-going appointments with my GP were booked immediately to ensure my condition did not break me off from seeking help, as very likely. Lastly, I was scheduled to speak with an academic counsellor to contemplate my options regarding my semester (they also immediately understood the gravity of my condition and weren’t intrusive, likely being used to such). Further medical treatments were thereafter discussed with the GP in consequent talks.

My GP was closely linked with the university healthcare network, so a passive & systematic approach was in-place to handle my situation. I could only hope to have a similar regiment should I have approached another unlinked GP, where an active search for information would be left up to the distressed student. Very likely, the student may have a better chance by breaking down the issue into personal rehabilitation & academic recovery.

Personal rehabilitation must necessarily take precedence, as the self-development requires a ready mind, which mental health issues take away. Self-development is necessary & core to studying at University. For my preservation, the actions undertaken were recurring GP appointments, counsellor visits, psychiatrist diagnosis and an appointment with the academic counsellor. The first three were part of personal rehabilitation and I would like to briefly summarize why they were necessary. Recurring GP appointments are, concurrent with the counsellor & psychiatrist appointments, for making the overall decisions in regards to personal rehabilitation options from mental health diagnoses. The treatment options usually include cognitive/speech therapy and medication. With each mental health disorder (anorexia, OCD, depression, etc) there are a multitude of different possibilities, so cognitive therapy and/or medication may work better alone or in combination. The psychiatrist is a specialized doctor who has the training and knowledge to accurately make mental health diagnoses, and to a much greater extent than a GP. Thus, GPs seek a psychiatrist’s diagnosis & recommendations, to determine if cognitive therapy and/or medication may be best. Any treatment prescribed depends on the patient’s approval, where patients may be against medication in some cases. In the case of depression, various medications target different neurotransmitters against potential chemical imbalance. Unfortunately, as causes vary and understanding is lacking, non-chemical imbalance causing depression leads to failed treatment by medication, off-putting many patients due to side-effects. Often, the timeframe towards making a diagnosis may be long, therefore a counsellor is needed to relieve pressure and defuse immediate thoughts of self-harm. A counsellor however is not a doctor nor is allowed to diagnose or prescribe therapies/medications to patients, but is very helpful towards the ongoing recovery. In summary, all three are usually needed for higher chances of rehabilitation.

Regarding academic recovery, it depends on your faculty, where different options may be present including cancelling the semester, deferring the exam (& shifting weight all to the exam), or continuing under variable accommodations discussed as per need. Unfortunately, my perspective is limited, as described previously, to what my academic counsellor allowed. I would not expect much creativity from academic counsellors however, as personal experiences & interactions highlight that they aren’t allowed to do much for undergrads anymore, more so within larger faculties.

Lastly, I want to mention during therapy, I learned that ‘suicidal thoughts weren’t normally present’ in healthy individuals. After partial results from treatment, it was apparently true. In addition, the rate of self-loathing thoughts decreased exponentially, as well as their severity, to metaphoric levels between bully-laughed at within a class of students to taking a vacation-nap on an isolated beach. Sure, the isolated beach may lead to some anxiety of unknown lurkers away from the beachfront, but only to such an amount that probability rules in relaxation. Since the hazardous time, I have also experienced that those vile thoughts can be relieved from socializing with trusted compatriots, which may be lacked within the isolated student. The academic environment where learning is secondary to undergrad hierarchy (GPA -> grants, graduate programs, competitive jobs, self-confidence to seek help/opportunities from instructors) reinforces that notion for introverts. After all, it is random chance that guides forming a friendship between two individuals.

I sincerely hope, if you are undergoing suicidal thoughts, you will talk to someone you can trust or a telephone helpline. Please don’t speak to former abusers, whom you have a history with no matter how optimistic. If you feel self-deprecating, seek a volunteer organization where people appreciate you so you can regain some of your spirit, this being my method towards personal well-being post-therapy. If you’re in a temporary crisis mode, or over-stressed, change your objectives to personal well-being immediately! An assignment or test can be deferred or re-weighted, but a breakdown has lasting consequences. You are not the first to be in crisis, and the faculty must accommodate.

If you feel of no consequence, let me know and I can try to brainwas—I mean encourage you towards some social causes I believe could use additional help (after some semblance of recovery of course). For instance, international agriculture, medical aid, food miles, local communities, cycling and botany.

 About the Author

Krishna Udaiwal, BSc, affected 2nd year of undergrad, dealing with the complications one at a time. Still impassioned & always reading on molecular life of plants and miRNA, aiming for MSc. Promoting science communication on Twitter, and always happy to help peers.