PhD and Rheumatoid Arthritis

posted
02-Jul-14, 09:18
edited about 14 seconds later
by Elbe
Avatar for Elbe
posted about 3 years ago
I've been a lurker for a while and the support on this forum has got me through some darker moments, I'm really just hoping that someone out there is experiencing something similar to me and has any advice on how to get through this.

I'm in my third year of a humanities doctorate, working full time, at the writing up almost finished stage, and seriously suffering with rheumatoid arthritis in my hands. The fatigue is draining me, the pain is constant, and everything I have to do involves using my hands. Voice recognition software is out since I have to write things down in order to understand if I understand it (!), typing is painful, handwriting is painful, even picking up a stack of papers is painful. All the good drugs make me unable to think properly, and while I know that this disease is here to stay and I have to find ways to get around it, I am almost at the point of despair. Does anyone else on here have this condition? How do people cope? The internet is full of useful suggestions like: rest, get more sleep, take it easy - all things that, as phd students, we KNOW are just not practical or possible at this stage.

I have, up to now, been working with the ebbs and flows of this disease but I'm struggling with it now, and the the support networks that do exist are woefully inadequate to people in their final desperate stages of phding. I'm really just hoping that someone with a similar problem can give me any advice on how they've managed their condition and their work. Help??
posted
02-Jul-14, 11:24
edited a moment later
Avatar for BilboBaggins
posted about 3 years ago
My situation was a little different, but I am probably on many similar drugs to you. I have a very rare auto-immune neurological disease, similar day to day to multiple sclerosis, and severely disabling. I had to study my history PhD part-time - I'd had to leave a full-time science PhD years earlier after the disease struck me at 22. I have enormous cognitive problems from my disease, and huge problems with fatigue. For much of my history PhD I could only work in 1 hour chunks at most, spread throughout the week, often no more than 5 hours total a week. But I did it.

I think given the stage you are at you need to have a proper sit down and work out both how much you have left to do, and what your limitations and practical working circumstances are.

For example you say you're at the writing up almost finished stage. But how near are you really? I know that stage can go on for a while you see :) Basically what have you left to do, how many words, how many months.

Also re your limitations I think you should look afresh at voice recognition software. For writing your thesis i.e. the stage you are at now understanding isn't the issue, but rather getting the words out. And you need to get those words out whatever way you can. If writing is too painful then try speech recognition. You may find it helps you a lot.

Have you also tried shaking up your writing timetable? For example rather than trying to write for many hours try working in short bursts. You may find it surprisingly effective, and less painful for you with typing etc. It may also help work around your confusion from the drugs. I found this was the only way I could work. I have enormous cognitive problems from brain damage from my disease, plus the drugs on top of that.

.... [going to continue in second message]
posted
02-Jul-14, 11:30
Avatar for BilboBaggins
posted about 3 years ago
... [continued reply]

When you say "working full-time" is that full-time studying? If so, have you considered switching to part-time given how many problems you are encountering now? It could give you valuable breathing-space, and more time to rest/recuperate from the pain and fatigue from typing etc. If you are funded by e.g. a UK research council they will support such a switch for medical reasons. They also support short breaks, as I took during my second PhD.

Have you had a candid talk with your supervisor? What about disability services at your university? Most universities now have a disability support team, and they should be able to give you advice. Have you been assessed for Disabled Students' Allowance? The assessment should be free, and may suggest some solutions you hadn't thought of. Importantly the disability support team can help to negotiate with your supervisor and any funding body to make any necessary changes.

But I wonder if going part-time might be your best option. Importantly it would give you more time to rest, and spread the load and typing pain etc. Significantly it may also reduce the stress that could with an auto-immune disease make your condition worse, with a significant chance of relapse.

And I'm assuming that you are getting proper medical care, and that you are on the most effective drugs. Is your consultant fully aware that you are a PhD student and the problems you are having?

Anyway hope those ideas help. Good luck! You can do it, but you may need to shake up some of the ways you have been working until now.

If you want to read more about my story, including 2 separate goes at a PhD, see

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