This is a guest post by Elita Baldridge (@elitabaldridge). She is a graduate student in our group who has been navigating the development of a chronic illness during graduate school. She is sharing her story to help spread awareness of the challenges faced by graduate students with chronic illnesses. She wrote an excellent post on the PhDisabled blog about the initial development of her illness that I encourage you to read first.
During my time as a Ph.D. student, I developed a host of bizarre, productivity eating symptoms, and have been trying to make progress on my dissertation while also spending a lot of time at doctors’ offices trying to figure out what is wrong with me. I wrote an earlier blog post about dealing with the development of a chronic illness as a graduate student at the PhDisabled Blog.
When the rheumatologist handed me a yellow pamphlet labeled “Fibromyalgia”, I felt a great sense of relief. My mystery illness had a diagnosis, so I had a better idea of what to expect. While chronic, at least fibromyalgia isn’t doing any permanent damage to joints or brain. However, there isn’t a lot known about it, the treatment options are limited, and the primary literature is full of appallingly small sample sizes.
There are many symptoms which basically consisting of feeling like you have the flu all the time, with all the associated aches and pains. The worst one for me, because it interferes with my highly prized ability to think, is the cognitive dysfunction, or, in common parlance, “fibro fog”. This is a problem when you are actively trying to get research done, as sometimes you remember what you need to do, but can’t quite figure out how navigating to your files in your computer works, what to do with the mouse, or how to get the computer on. I frequently finish sentences with a wave of my hand and the word “thingy”. Sometimes I cannot do simple math, as I do not know what the numbers mean, or what to do next. Depending on the severity, the cognitive dysfunction can render me unable to work on my dissertation as I simply cannot understand what I am supposed to do. I’m not able to drive anymore, due to the general fogginess, but I never liked driving that much anyway. Sometimes I need a cane, because my balance is off or I cannot walk in a straight line, and I need the extra help. Sometimes I can’t be in a vertical position, because verticality renders me so dizzy that I vomit.
I am actually doing really well for a fibromyalgia patient. I know this, because the rheumatologist who diagnosed me told me that I was doing remarkably well. I am both smug that I am doing better than average, because I’m competitive that way, and also slightly disappointed that this level of functioning is the new good. I would have been more disappointed, only I had a decent amount of time to get used to the idea that whatever was going on was chronic and “good” was going to need to be redefined. My primary care doctor had already found a medication that relieved the aches and pains before I got an official diagnosis. Thus, before receiving an official diagnosis, I was already doing pretty much everything that can be done medication wise, and I had already figured out coping mechanisms for the rest of it. I keep to a strict sleep schedule, which I’ve always done anyway, and I’ve continued exercising, which is really important in reducing the impact of fibromyalgia. I should be able to work up my exercise slowly so that I can start riding my bicycle short distances again, but the long 50+ mile rides I used to do are probably out.
Fortunately, my research interests have always been well suited to a macroecological approach, which leaves me well able to do science when my brain is functioning well enough. I can test my questions without having to collect data from the field or lab, and it’s easy to do all the work I need to from home. My work station is set up right by the couch, so I can lay down and rest when I need to. I have to be careful to take frequent breaks, lest working too long in one position cause a flare up. This is much easier than going up to campus, which involves putting on my healthy person mask to avoid sympathy, pity, and questions, and either a long bus ride or getting a ride from my husband. And sometimes, real people clothes and shoes hurt, which means I’m more comfortable and spending less energy if I can just wear pajamas and socks, instead of jeans and shoes.
Understand that I am not sharing all of this because I want sympathy or pity. I am sharing my experience as a Ph.D. student developing and being diagnosed with a chronic illness because I, unlike many students with any number of other short term or long term disabling conditions, have a lot of support. Because I have a great deal of family support, departmental support, and support from the other Weecologists and our fearless leaders, I should be able to limp through the rest of my Ph.D. If I did not have this support, it is very likely that I would not be able to continue with my dissertation. If I did not have support from ALL of these sources, it is also very likely that I would not be able to continue. While I hope that I will be able contribute to science with my dissertation, I also think that I can contribute to science by facilitating discussion about some of the problems that chronically ill students face, and hopefully finding solutions to some of those problems. To that end, I have started an open GitHub repository to provide a database of resources that can help students continue their training and would welcome additional contributions. Unfortunately, there doesn’t seem to be a lot. Many medical Leave of Absence programs prevent students from accessing university resources- which also frequently includes access to subsidized health insurance and potentially the student’s doctor, as well as removing the student from deferred student loans.
I have fibromyalgia. I also have contributions to make to science. While I am, of course, biased, I think that some contribution is better than no contribution. I’d rather be defined by my contributions, rather than my limitations, and I’m glad that my university and my lab aren’t defining me by my limitations, but are rather helping me to make contributions to science to the best of my ability.
Jabberwocky Ecology 
Elita, thanks for sharing. “I’d rather be defined by my contributions, rather than my limitations.” I think we can all agree on this for you and for ourselves. It’s good to hear that you have a supportive personal and profession community. Best of luck with management and treatment and of course with your dissertation.
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Thank you for sharing your story. I am going through the same thing myself. I am trying hard not to quit school, but it is hard.
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It feels so good to not be alone in this situation. I have been working on my PhD in ecology for the past five years and became ill halfway through. I too have fibromyalgia and several other health problems. I often worry, on my bad days, that I won’t be able to finish. I am also stressed about paying back the enormous student loans I have and my families’ financial situation. Stress makes things all the more worse and I have yet to figure out how not to stress. Which medications are working for you? I am still having trouble finding things that don’t make me more tired or zoned out. I
I was taking nortriptyline, 10 mg, 2x daily. I think it was helpful initially, to knock the pain down to a level where I could start building myself back up physically with exercise, but it fogged my brain out so much that I didn’t realize how bad it was fogging up my brain. I quit taking it a couple of weeks ago, in a last ditch effort to get enough brain function to make some progress, which was fortunately successful. I hurt more without any medication, but it matters less, if that makes any sense. And it helps me deal with it to know that it’s non-meaningful pain. I can ignore it a bit better, knowing that I’m not actually damaging myself by doing so.
So right now, I’m not taking any medication, but am doing daily exercise- I find the Tai Chi for Arthritis DVD from the Arthritis Foundation to be very good, and it’s something that I can do on days when working from a chair is better. Yoga is good but proves tricky on bad balance days, or hand sensitivity days. The exercise is proving to be the best management- and the rheumatologist who diagnosed me said that the patients he knew that were doing the best had an exercise regimen, so I figure that is probably a good recommendation.
I’m not willing to try to search for a better medication for me at the moment, because I’m able to work right now, and I don’t have the time to burn playing find the right medication. It’s dissertation or bust for me, at the moment.
My other list of management strategy items:
Working remotely- this has made a giant difference. By the time I made the trek to the office, I hurt a lot, and didn’t have anything left to actually do work.
Computer set up:
Monitor riser, to get screen at a level where there is no neck strain
Hot water bottle wrist pad for using with mouse
Ergonomic kneeling chair
Kinesis Freestyle 2 keyboard
Other good things:
Electric heating blanket (full body heating pad)
Full finger and half finger gloves (for the burning hand thing)
Heated mattress pad
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@elitabaldridge
I am very happy to have found your article, as it gives me some motivation to keep going. I was diagnosed over a year ago but keep going downhill, always walking with crutches, brainfogs up the wazoo and general exhaustion to the point where sometimes finishing my sandwich is too much work. I have only just started my PhD in security studies half a year ago and already often worry if I can finish it. I suppose I too have an amazing team backing me up, but need to learn to dare to lean a little more on them when needed. I might write ‘I’d rather be defined by my contributions, than by my limitations’ on my whiteboard and accidentally use permanent marker.
Thanks for sharing your story.
Hi,
It feels good to know that I am not alone. I was diagnosed with Fibromyalgia five years back when I just started my masters. I was completely bedridden for months and everyone suggested me to quit my studies. Somehow I decided not to give up and continued trying my best. I feel proud to say I finished my masters without any semester break and I also won the best thesis award for my masters.
Today, I am almost at the end of my PhD in physics, going to submit my PhD thesis soon. It has been a struggle at every single moment as I also stay alone in a foreign country since my masters. But yes, I could do it..and I am sure you all will be able to do it 🙂
Always remember “We are more vulnerable than we could ever thought but we are stronger than we ever imagined”..Keep going..Good luck to all my fibro friends..
Thank you for the blog post. I have just been diagnosed and in year 2 of my PhD and really not sure where to turn.
You posted this back in 2014. How did it all go in the end?
Well, I successfully completed my doctorate. Unfortunately, I wasn’t able to tolerate any of the medication options, and the computer time necessary to keep pursuing a science career was just causing one flare after another. So, I’m currently raising Nubian goats (who are the best and most charming of creatures) instead.
I am very happy and encouraged by this story. I’m also a phd student in organic synthesis field, and suffering from this chronic pain throughout this year. Later I come to know that I have fibromyalgia. I am still I doubt whether I should continue my phd or not, but now I’m assured that I can finish my phd staying alone away from home.
I was searching for the fellow fibro fighters plus PhD researchers. I was diagnosed with FMS on August 2017. To be honest, I have to confess that I have not done anything close to enough for my PhD since then (or even couple of months before that). I am on my writing period and have to submit soon. Recently my supervisors asked me to contact the Disability team of the university if they can offer any sort of support. I am not too sure what kind of support to ask from them, since I do not have to travel to uni often, since I only have to finish writing my thesis. Can you guys help what sort of support can help in this stage of PhD ?
Hi Amy – I’m not sure if Elita is still monitoring this thread, but I can give you my recollection (as her advisor). At the university level the big thing that Utah State did was to come up with a dissertation fellowship so that all Elita had to do was write. It sounds like you may be in this position already, but Elita was on a TA and being able to focus all of her available energy on her dissertation was very helpful. She worked entirely remotely (we did all of our meetings by video conference) so that she never had to spend energy coming to campus and could live where her support system was best. My recollection is that Elita did talk to the disability office but they didn’t do much since they were primarily focused on classroom and building accommodations.
If you haven’t seen them already Elita has several other posts on doing science and finishing a PhD with a chronic illness. They all list things that Elita found helpful, with the last one in particular focused on tips and tricks for accomplishing what she wanted.
* https://jabberwocky.weecology.org/2015/05/25/successfully-completing-a-dissertation-with-a-chronic-illness/
* https://jabberwocky.weecology.org/2015/07/06/external-challenges-of-chronic-illness-in-graduate-school/
* https://jabberwocky.weecology.org/2015/08/31/sciencing-with-a-chronic-illness-tips-tricks-technology/