By Laura, @chronically_laura
I did not embark upon a PhD lightly. Even before my decline in health, it was something I thought long and hard about. I reached out to employers to ask whether they choose individuals with a PhD over someone with 3 years on-the-job experience and included my CV. Only one company replied…inviting me for interview. I went and got offered the job! I was so happy, but then had to sit and think carefully. I was at a crossroads. In the end, it was my thirst to have my own project and do independent research that won me over. I was offered a 4-year PhD studentship, which was (still is) very difficult to come by.
What is POTS? Find out here
Looking back, in the year leading up to the start of my PhD, my health had already started to go downhill. I didn’t acknowledge it. It had happened a few years ago and with a few medications I was able to get back to normal. I got really stuck into my PhD; working hard day, night and weekends. Four months into my PhD I had to take a medical leave of absence (thanks to gastrointestinal dysmotility and POTS).
When I returned I was even more determined to hit the ground running. I was coping on minced up food etc until late 2018 when my body had enough. I was back in the hospital for 2 weeks and had an NJ placed. I then returned to uni and things started off well but by March 2019 I was back in the hospital. Unable to stand for long before passing out. I was in my local hospital for 8 weeks. After multiple tests, I was diagnosed with a neurological autoimmune disease on top of my ‘usual’ POTS and GI stuff.
It was a testing time. I was transferred to a specialist autonomic centre in London where more tests were repeated/performed. A faint was caught on the tilt table test, and neuro-cardiogenic syncope and POTS (again) were diagnosed in addition to query hypermobile spectrum disorder. I was started on new medications and then returned to my parents to recover once I was discharged; learning to walk and build up strength again.
This brings me to now. I returned to uni in July 2019. I don’t want to speak too soon, but things are going well. I have accepted I cannot do what most PhD students can – which is work all day, evenings and weekends. That does not work for me. I need to allow time for my body to rest and recover. There are some days where I am not able to go into uni, but I am able to do computer-based work from home. Whilst there have been some bumps in the road with trying to get accurate and concise information from the uni surrounding multiple issues (which I won’t go into), I do have a reasonable adjustment plan in place.
My advice to anyone looking to attend uni who has a chronic illness is be honest with yourself about what you feasibly can and cannot do. Do not put too much pressure on yourself to be like the other students…you probably won’t and it will only disappoint you. Have realistic expectations. Tell the uni how your chronic illness affects your everyday routine and ask for some alternative plan to be in place if you’re having a bad day.
Not all universities will be aware of certain chronic illnesses and the impact these have. Do not feel unworthy of help just because they are unaware. We need to inform them. Don’t be embarrassed about needing additional equipment. I have a walking stick chair now, in case I’m stuck somewhere without a seat, it really helps me. I also still have my wheelchair in the garage just in case. I don’t want to miss out on events or conferences just because I am not able to stand or walk around as much as I used to. Hold your head up high!
Most of all, make sure a PhD is something you really want to do before going for it. It is tough (even for 100% healthy people), but it can also be extremely rewarding, particularly if you’ve had to battle through health and PhD at the same time. Picking up that certificate at the end (and wearing a graduation cap) will make it all worthwhile!
Laura is a PhD student and chronic illness advocate with POTS, NCS, Gastroparesis, Bowel issues, Dysphagia, Scoliosis, Raynaud’s, Autoimmune issues and MCAS. Follow her story on Instagram here.