As I mentioned in the first post, having a chronic illness means that there can a lot of problems hiding behind the cheerful facade of graduate students you know. Here I describe some of the external challenges faced by people with chronic illness and disabilities that can be a much greater stumbling block than the condition itself.
Because I had such strong support from my family and my lab, I didn’t have to worry about the majority of these challenges. I didn’t have to worry about finances, losing health insurance, not being able to afford medical care, having to be on campus, able to work a regular schedule. Thus, I just had to deal with the physical challenges, and I could invest most of my energy into my research.
Finances/health insurance: Being able to afford medical care as well as paying for all of the regular expenses of being a PhD students can be extremely difficult. Although many PhD programs offer subsidized insurance, the long process of diagnosis, combined with extensive medical tests, plus the expense of treatment can leave massive amounts of medical debt. These issues can be magnified if a leave of absence is necessary, which typically eliminates both salary and insurance. Additionally, during a leave of absence, any student loans come out of deferment, making a leave of absence extremely challenging to take, and a chronic illness is unlikely to improve with a leave of absence with the added financial stress. I have a husband, who has health insurance for the both of us, and we were able to move in with my parents, and this was a situation that has been actually really great for everyone. This completely removed financial/health insurance worries from the picture, and there is always someone around for me just in case.
Advisor support: A good advisor is important for all graduate students, but it becomes especially important when dealing with a chronic illness. There are many stories of graduate students who have struggled way more than neccessary due to unsupportive advisors, or unsupportive university structures. (e.g., 1, 2, 3). The Weecology lab is awesome, and just made accommodations happen. In a later post, I’ll talk about some of the technological tools that made completing my PhD possible, but my favorite was the Kubi (https://revolverobotics.com/), which let me turn my own “head” when I was remoting in. Ethan also was my advocate at the university level, to make things happen so that I could work remotely to finish up.
Working: Chronic illness can result in many factors that make getting work done challenging, from the difficulty of getting to work, due to an inability to drive, chronic fatigue, medication effects, cognitive dysfunction, or being worn down by pain and discomfort. Even the physical environment of work can be challenging; for example, fluorescent lighting that triggers migraines. Getting to campus was taxing enough that by the time I got there, I was too worn out to get much done, and would have to leave early before I broke down. I also had to surrender my driver’s license, so I relied on public transportation (which caused a significant amount of “discomfort”) or I needed to get a ride from my husband (which caused slightly less “discomfort”). In addition, I have flares, so I’m good to work some days, but then am unable to function either physically or mentally some days. University campuses also tend to have some major accessibility problems. I was fortunate in that my office and the lab that I taught in were on the first floor, but when I returned for my defense I had to get to the second floor of a building with a broken elevator. Working remotely allowed me to set up my workspace so that I could work longer, and didn’t have to use up all my available energy going to campus to work.
Medical: Many chronic conditions require frequent medical care, through monitoring or trying out treatment options. My condition is chronic, but not progressive, and so I didn’t actually need a lot of medical care after I got my diagnosis. We’d figured out a treatment that worked before then, and I had a great doctor (USU Student Health Center is awesome, particularly Dr. Price). Thus, I didn’t need to spend a lot of time at doctor’s appointments, which for me would end up writing off an entire day, and then generally take the next day to recover from the appointment. Before my diagnosis, I was spending a lot of time at the doctor, experimenting with new medications, to see if they would have an effect, being poked more times than a pincushion, and waiting to see specialists.
Medication: Medications for chronic illness can have a lot of unpleasant side effects, including nausea, headaches, appetite loss, insomnia, fatigue, immune suppression, etc. Some of us end of taking medication to treat the side effects of the medication we are on to treat our condition. Most of the treatment options for fibromyalgia work by altering levels of neurotransmitters, and thus tend to be difficult to adjust to, have a long adjustment period, and make working while adjusting impossible. In addition, the beneficial effects generally wear off over time, leaving just the negatives, which happened with the first medication I was on. Because I didn’t have months to spend trying to find another medication that might work, and I was getting work done without medication, I saved that until after I was done with my PhD. I’ve spent the last two months dealing with adjusting to a fibromyalgia treatment I haven’t tried before, am minimally functional, and it seems as if this treatment option is worse than the fibromyalgia on its own. Because fibromyalgia is variable, I still have another two months to go to make sure that the medication is not effective, or whether I could be in a flare instead.