Anyone else starting PhD with chronic illness?

[MaytheSchwartzBeWithYou]

Hello All,

I haven't seen a ton of comments about chronic illness on the forums, so I wanted to post in case any other incoming/current grad students are navigating grad. school with an ongoing health issue. What I'm going through is somewhat new to me, so it's a little difficult to share. I'm trusting all you smarties on here! :-)

I'm really excited to start my PhD in the Fall, but I'm pretty nervous about managing my coursework, research, and all of the other physical, emotional, and intellectual demands of the program. I've had symptoms of SOMETHING (possibly autoimmune, possibly fibromyalgia) for about the last year, primarily pain, fatigue, and "fogginess," and am undiagnosed due to inconclusive test results. The past month or so has been fairly difficult, and every time I have a flare-up I worry that it might be the "new normal." The sorts of possible diseases for me can take years to diagnose, so I'm not sure how Disability Services might be able to help. I'm sure some of it is the stress of feeling ill, not knowing why, and worrying about whether it will go away, get worse, etc. Understanding the way academia works, I also would much rather be known for my work and accomplishments than the fact that I have a health problem that impacts my studies. 

I want to show I am committed to my PhD and my program, that I have what it takes, but I also want to walk the fine line between excelling in my program and taking care of myself. Right now I'm just trying to practice accepting my situation, working through the bad days as much as I can (at my current job), understanding my limits, etc. That being said, I know going back to school will be really different from my day job. Does anyone else here suffer with chronic illness, and how do you plan to/how do you navigate the demands of school with your health constraints? 

I appreciate your comments, and admit to wanting some comfort that I am not alone!

Edited April 25, 2017 by MaytheSchwartzBeWithYou

[FacelessMage]

I'm starting my PhD in the fall, and I have ulcerative colitis. I flared really bad throughout the start of my Master's, and it really is scary and overwhelming. 

[ejpril88]

@MaytheSchwartzBeWithYou I am sorry that you're going through this. As someone who was having health issues without a diagnosis for two years (luckily, it ended well), I know how hard it is, especially if you're anything like me and can't stay away from Google. What I noticed when I moved to US from Europe a year ago is that people here react much better to physical and mental illness and won't think you're weird. If you think your health issues could affect your performance in school, you can always talk to your advisor and tell them how you feel. I'm sure they can help.

[Neek]

I'm in my second year, have dealt with chronic illness (mainly a cluster of symptoms around chronic fatigue and pain) at varying degrees of severity since 2012. Being in graduate school with chronic illness can be very hard, especially because many of the hegemonic narratives about how one should do grad school involve notions of working all the time, neglecting one's physical health b/c working all the time, etc. First, don't buy into any of those narratives. They're not true. This is real life and we should all be engaging in some kind of balance, chronically ill or not. Second, I definitely felt the questions of is it going to even be possible/am I even capable of getting through grad school, particularly in my first year. I now feel a little more solid on that, but I would say find out who your allies are--perhaps other students in your department, perhaps some faculty. It can be nice to know who it is safe to discuss how health issues are shaping your ability to do work--many professors are okay with that, but not all, so it can be good to carefully get a sense for each individual professor's attitudes.

Obviously specifics of what to do depend on your symptoms or what exacerbates your illness, but a few things I do to make sure I keep my health relatively manageable include sleeping enough, eating well, and taking time to just rest even when it seems like the pressures of grad school say those things are "too much to ask." Also, don't compare yourself to others--first of all, people are always facing more challenges than they ever seem to be when you look at them from the outside, and second of all, each person does things in their own way and at their own pace. Comparing your chronically ill self to others is just a recipe for feeling shitty about yourself (I say this even as I still slip into this mode of comparison sometimes).

Being chronically ill among predominantly young people who appear to be mostly healthy can be isolating. I haven't solved that one yet. If you're lucky the people in your department turn out to be good friends (since you'll be spending much of your time with then), but that may not be the case, especially depending on their attitudes toward whatever rhythms you seek as a result of chronic illness. I'm still trying to sort this one out...I feel very lonely a lot of the time and feel like there is no space for acknowledging my status as being a chronically ill grad student...hence my searching on grad cafe to see if there was anyone else out there. I'd love to talk further with folks going through this stuff--even if just to create a sense of solidarity and a sense that chronic illness in grad students isn't unheard of.

 

[ejpril88]

14 hours ago, Neek said:

(...) hegemonic narratives about how one should do grad school involve notions of working all the time, neglecting one's physical health b/c working all the time, etc. First, don't buy into any of those narratives. They're not true. This is real life and we should all be engaging in some kind of balance, chronically ill or not.

Yes!!! I will start my PhD this Fall and I'm really scared because many people here keep pointing out that grad students should work "minimum 60 hours". I would like to have a life besides school and I hope other people from my cohort will want the same thing.

Your post is very honest and I like your advice to MaytheSchwartzBeWithYou. I'm curious about this part:

"I feel very lonely a lot of the time and feel like there is no space for acknowledging my status as being a chronically ill grad student"

Could you give an example of a situation when you felt isolated?

[MaytheSchwartzBeWithYou]

On 4/24/2017 at 7:11 PM, FacelessMage said:

I'm starting my PhD in the fall, and I have ulcerative colitis. I flared really bad throughout the start of my Master's, and it really is scary and overwhelming. 

Faceless, I'm so sorry to hear you are dealing with colitis. I have a cousin with colitis and it was hell for him for a few years. How are you doing now? How did you handle your flares during your master's?

 

On 4/25/2017 at 6:55 AM, ejpril88 said:

@MaytheSchwartzBeWithYou I am sorry that you're going through this. As someone who was having health issues without a diagnosis for two years (luckily, it ended well), I know how hard it is, especially if you're anything like me and can't stay away from Google. What I noticed when I moved to US from Europe a year ago is that people here react much better to physical and mental illness and won't think you're weird. If you think your health issues could affect your performance in school, you can always talk to your advisor and tell them how you feel. I'm sure they can help.

Thanks, ejpril. I am ALL OVER Google, especially without an official diagnosis, so I know exactly how you feel! Thanks for the encouragement - I do plan to talk to Disability if I feel it's needed, but I have been counseled to be careful about divulging my health issues to people in my department (as I said, I want to be seen for my work, not the drawbacks of being chronically ill). I'm glad you felt more accepted when you moved to the US! How are you feeling now?

 

18 hours ago, Neek said:

I'm in my second year, have dealt with chronic illness (mainly a cluster of symptoms around chronic fatigue and pain) at varying degrees of severity since 2012. Being in graduate school with chronic illness can be very hard, especially because many of the hegemonic narratives about how one should do grad school involve notions of working all the time, neglecting one's physical health b/c working all the time, etc. First, don't buy into any of those narratives. They're not true. This is real life and we should all be engaging in some kind of balance, chronically ill or not. Second, I definitely felt the questions of is it going to even be possible/am I even capable of getting through grad school, particularly in my first year. I now feel a little more solid on that, but I would say find out who your allies are--perhaps other students in your department, perhaps some faculty. It can be nice to know who it is safe to discuss how health issues are shaping your ability to do work--many professors are okay with that, but not all, so it can be good to carefully get a sense for each individual professor's attitudes.

Obviously specifics of what to do depend on your symptoms or what exacerbates your illness, but a few things I do to make sure I keep my health relatively manageable include sleeping enough, eating well, and taking time to just rest even when it seems like the pressures of grad school say those things are "too much to ask." Also, don't compare yourself to others--first of all, people are always facing more challenges than they ever seem to be when you look at them from the outside, and second of all, each person does things in their own way and at their own pace. Comparing your chronically ill self to others is just a recipe for feeling shitty about yourself (I say this even as I still slip into this mode of comparison sometimes).

Being chronically ill among predominantly young people who appear to be mostly healthy can be isolating. I haven't solved that one yet. If you're lucky the people in your department turn out to be good friends (since you'll be spending much of your time with then), but that may not be the case, especially depending on their attitudes toward whatever rhythms you seek as a result of chronic illness. I'm still trying to sort this one out...I feel very lonely a lot of the time and feel like there is no space for acknowledging my status as being a chronically ill grad student...hence my searching on grad cafe to see if there was anyone else out there. I'd love to talk further with folks going through this stuff--even if just to create a sense of solidarity and a sense that chronic illness in grad students isn't unheard of.

 

Neek, your post is really great - thank you for sharing your story and such great advice. I wonder if, since things like yoga and walking are good for chronic pain (not to mention stress reduction, whether you are sick or not!), you might be able to find some people in your department with whom to engage in those activities, and perhaps form friendships with some of your fellow students if you haven't already? I'm sad to read you feel isolated, and I'm happy to talk further (on the forum or via message) should you (or others!) need a listening "ear." Any differences in physical ability you might have in no way limit your intellectual and social contributions to your department - I hope your peers realize that. I'm incredibly fortunate to have a supportive spouse and a close relationship with my parents, so I have something of a built-in support system.

I really appreciate everyone's responses, and your willingness to share information that might be sensitive and/or personal. Chronic illness presents a whole new set of issues and lifestyle changes I have yet to wrap my head around. Part of me just wants to "put it out there" and be like "this is part of my life, I am who I am, I still work hard and I'm awesome, deal with it."  But, we know in the professional world it's not that simple...

[ejpril88]

1 hour ago, MaytheSchwartzBeWithYou said:

I'm glad you felt more accepted when you moved to the US! How are you feeling now?

I'm doing great, it turned out I should have listened to a doctor who told me what to do more than two years ago, but it didn't sound reasonable to me at that time.

My issues didn't have any (visible to others) physical symptoms, so no one knew I'm having trouble. I looked like a completely healthy person and only my closest friends knew what I was dealing with. The only "weird" thing about me was that I was trying to avoid sugar, so every time I skipped the desert, I had to explain - no, I'm not trying to loose weight and yes, I know that "just a small piece won't kill me".  

I am curious about Neek's experience because I can't imagine someone would be that rude to ignore people just because of their illness.

[MaytheSchwartzBeWithYou]

2 hours ago, ejpril88 said:

I'm doing great, it turned out I should have listened to a doctor who told me what to do more than two years ago, but it didn't sound reasonable to me at that time.

My issues didn't have any (visible to others) physical symptoms, so no one knew I'm having trouble. I looked like a completely healthy person and only my closest friends knew what I was dealing with. The only "weird" thing about me was that I was trying to avoid sugar, so every time I skipped the desert, I had to explain - no, I'm not trying to loose weight and yes, I know that "just a small piece won't kill me".  

I am curious about Neek's experience because I can't imagine someone would be that rude to ignore people just because of their illness.

Oh, I TOTALLY get the thing about avoiding sugar. I'm also diabetic, so I'm pretty careful most days about what I eat. I tend to take pieces of bread off my sandwiches, refuse wine and champagne, skip dessert, etc. etc. People who don't know me often look at me funny and tell me to "live a little," but they don't have to deal with the hyperglycemia symptoms afterward!

[underscore_frosty]

Well, I'm not chronically physically ill, but I am suffering from chronic mental illness and I'll be starting my PhD in computer science this fall.

My mental health journey has been...an interesting experience to say the least. It started about 2 or so years ago when I was about half-way through my 3rd year of undergrad (this is my 5th and final year). As of right now my diagnoses are schizoaffective disorder (depressive type, mood disorder dominant), panic disorder, HPPD, PTSD, and Aspberger's/HFA. It's been difficult and there were times when it severely affected all aspects of my life, college and family included. There were times when literally everyone who knew about my condition was urging me to dropout and consider long term hospitalization (this came after, we'll just say, a credible threat to my safety). There were more times than I care to mention when I seriously considered giving up for good.

But I pushed through and now here I am 2 years later about to graduate with a BS in computer science and well on my way to starting a PhD. I know doing a PhD is order of magnitude more stressful and difficult than undergrad, but I feel that now that I have matured some and learned to cope with my conditions I should be able to get through this.

[Neek]

On 4/26/2017 at 7:10 AM, ejpril88 said:

many people here keep pointing out that grad students should work "minimum 60 hours".

Badddd. Bad bad bad. As someone coming off a 67 hour work week now completely unable to do anything, I recommend pushing to create an ethic of moderation and balance in your dept. I do actually track my working time, and typically clock in around 42-50 hours a week...that is about all I can manage and have it be somewhat (barely) sustainable. Fwiw, a lot of people normalize or brag about working 60 hour weeks without actually tracking their time...I can't find the article at this moment, but I once read an article that talked about how a study of academics showed that basically everyone says they are working 60-70 hours but most are working 40-55. I started sending out a weekly outdoor activities email to grad students in my dept...even though most of them aren't outdoorsy people or choose to do their own activities not the ones I invite them on, the feedback I've received has been that it has helped people feel more okay with taking time off to rejuvenate. So I think as Individuals we can help shift those norms or narratives a tiny bit. 

 

[nevermind]

I have moderate Crohn's Disease and I guess my suggestion would be to make sure you get your flare-ups under control as much as possible before starting a graduate program. In addition to establishing your physician/specialist relationship quickly and getting on the right meds, there's not a lot else you can do. I deal with fatigue a lot, but that's honestly something you have to push through. Because of Crohn's, gluten really aggravates my symptoms, so I maintain a gluten free diet (which I've done for YEARS), it just sucks because of all the "free food" at grad. events all contain gluten (pizza, cookies, donuts, sandwiches). I'm used to bringing my own food everywhere and adjusting as-is. I'm attending a language program this summer and have already established that this will be accommodated. 

 

 

[Neek]

@ejpril88 and @MaytheSchwartzBeWithYou, to clarify regarding my comments on the loneliness/isolation--which I can see looking back on my original comment was not particularly clear: My department is actually full of friendly grad students, they are people I "get along" with and several who I even enjoy spending time with/talking with as friends or near-friends. My feeling of isolation is specifically regarding my existence as a person with chronic illness/the ways in which chronic illness shapes my ability to do things....like ejprill88 my symptoms are not visible, when I'm feeling like shit at most people might comment on how I "look tired" (but then, that is cast off as "well we are all tired in grad school b/c we work so hard" without people thinking about the fact that "tired" means a lot of different things to different people). I don't really now how much of it is that because I look healthy people don't comprehend what I describe of my bodily experience or how much of it is that people who haven't experienced chronic illness just don't get it regardless of how they are reading my body, but the isolation comes from trying to be open about how this thing is affecting me and others generally not getting it and not thinking my chronic fatigue is any different from "we're all tired, it's grad school."

The other piece is not even specific to grad school, but just part of having a chronic illness...people, both in terms of personal relations and professional expectations, are really good at having sympathy for acute illnesses like the flu or for severe issues that might land you in the hospital like appendicitis or something, but people have little knowledge of how to deal with (or perhaps little patience, depending on the person) long term illness that fluctuates...I've found that when I've used friends as avenues to discuss my own concerns about my health, people are supportive at first but eventually just move away/create distance, even when I try to be especially mindful of not asking too much of people's emotional energy. So I find that grad school is especially like that because the students in my dept are like pseudo-friends....I'm only really friends with a few up them, many of them I'm friendly with, and I don't hang out with other people than people in my dept. very much, but they aren't people with whom I can discuss chronic health issues and have anyone genuinely understand.

On the upside, I just started participating in a chronic health concerns group through the university's counseling center...we have only met once so far, but in that first meeting it was like everything everyone said just resonated so much...for the first time since coming to grad school I didn't feel isolated in the way I'm trying to describe. And it brought this big feeling of relief of like "I am not the only young person in grad school dealing with a chronic illness." So the isolation is not people being jerks, people in my dept. are definitely nice and friendly people for the most part but most of them just don't "get" what it is like to deal with a chronic illness and don't really know how to respond to a human who is sometimes able to do X, Y, and Z things and sometimes not when they can't see any difference on the surface of me as a person.

Does that clarify things at all?

[Neek]

5 minutes ago, nevermind said:

t just sucks because of all the "free food" at grad. events all contain gluten (pizza, cookies, donuts, sandwiches). I'm used to bringing my own food everywhere and adjusting as-is.

ugh, I feel you. I have celiac disease and will basically become completely dysfunctional if i eat gluten and not only do I not get to take advantage of all the free food (le sigh) but sometimes I end up stuck at required events where my dept or school puts 0% effort into meeting any kind of dietary restrictions (and then people look at you weird when you pull out your own lunch box!)

I just finished organizing a conference and made a pointed effort to make sure everyone's dietary needs were met just to prove that it is totally possible and financially feasible. Of course, I don't know if any of the people who normally make food decisions noticed, but I felt good about it.

and they said grad school was all about the free food....

[ejpril88]

15 hours ago, Neek said:

I started sending out a weekly outdoor activities email to grad students in my dept...

Please move to my future department, I need this

15 hours ago, nevermind said:

It just sucks because of all the "free food" at grad. events all contain gluten (pizza, cookies, donuts, sandwiches).

I hear you. I don't have any dietary restrictions but I am trying to eat healthy and most of the time find it very hard. I work at a law office and every now and then they offer free cookies, pizza and pastries.

@Neek I understand now. Thanks for clearing that up!

[orange turtle]

I started 1st year last year with a chronic illness myself--neurological, can get epic. It sucked major amazeballs. I was so stressed out from the move and the big city and trying to make sure I didn't fail. On retrospect, I learned several things I wish I knew earlier, including that I should have asked questions here on Grad Forum.

What I learned this last 8 months:

1) Your department chair can make or break your experience--find out which camp your chair belongs to. Mine was and is a lifesaver and had many great tips on navigating the system. When I finally confessed to him I was on the verge of collapsing from an ongoing chronic health problem, he looked at me and said "Well, what took you so long to ask for help? I'm paid the big bucks to help you through this! That's why I get the fancy office and wear the fancy tie!"

2) Ask for help, but be careful who you ask for help from. You will need people to support you, but not everyone will be your ally. Find out who your lifesavers are, treasure them, and always remember to say thank you. Learning to say sorry doesn't hurt either. Never apologize for your disability and/or health condition, but it's never too late to learn to say, say "I'm sorry I'm running late." Better to not run late, but being sick sometimes affects the space-time continuum. :-)

3) Know your limits, and know when to say, well, f*** you, I come first.

4) Do not overdo classes, no matter how tempting it is.

5) Talk to the disability office. They have some amazing services; maybe they have some suggestions on how to get diagnosed, or services they can recommend. Like I have a program that reads to me so when my neurological condition acts up, and I am quite ill, and can't read well. Like whaaat? The program reads to me. Yes, it gets pretty hilarious when it tries to read scientific words, but it still reads to me. 

6) Learn to laugh at yourself.

7) If you take medication (I do), don't forget. Always have some at home, on you, and in your office. I needed the emergency room because I, of course, forgot mine on exam day, and landed in the hospital. Got a nice lecture from my neurologist and paramedics. (if my drug levels drop, I'm in trouble)

8) Do something outside your program. Doesn't matter what it is. Run, swim, bake, see family, see friends, garden, party, volunteer, go to church/mosque/temple, watch movies, have sex, rock climb, travel, knit, play music, campaign for something, have a pet, paint, collect something, judge others, shop, repair cars, paintball, do yoga, whatever.

 

 

[orange turtle]

By the way, for anyone interested and for those who still handwrite...

I use a LiveScribe pen for notes, meetings, lectures. It records voice/sound and allows me to organize my notes. It's actually pretty awesome for those days when my medication fogs me up terribly--it allows me to store my handwritten notes online and as I relisten to it, I can add notes I missed, and the Livescribe will be smart enough to link it to the recording.

Also, for a minimal one-off fee ($20), I can get a software to convert handwritten notes to computer text.

The big downside is you need special "smart" paper for this--the special paper costs like $35 for a set of four (4) 8.5 x 11 books. So if you get slides for class, it's a bit tricky. And it doesn't work if you're reading a book or something.

The LiveScribe pen is supported by my university's disability office. I get it on loan from them.

[MaytheSchwartzBeWithYou]

On 5/1/2017 at 3:40 PM, Neek said:

Does that clarify things at all?

Hey Neek! Sorry for the late response, I've been on and off GradCafe lately. Yes, that does clear things up, thank you - and I'm glad you have a support group at your school. I'm hoping they have something similar where I'm going, or perhaps I'll work to start one myself. 

 

On 4/26/2017 at 9:55 PM, underscore_frosty said:

Well, I'm not chronically physically ill, but I am suffering from chronic mental illness and I'll be starting my PhD in computer science this fall.

My mental health journey has been...an interesting experience to say the least. It started about 2 or so years ago when I was about half-way through my 3rd year of undergrad (this is my 5th and final year). As of right now my diagnoses are schizoaffective disorder (depressive type, mood disorder dominant), panic disorder, HPPD, PTSD, and Aspberger's/HFA. It's been difficult and there were times when it severely affected all aspects of my life, college and family included. There were times when literally everyone who knew about my condition was urging me to dropout and consider long term hospitalization (this came after, we'll just say, a credible threat to my safety). There were more times than I care to mention when I seriously considered giving up for good.

But I pushed through and now here I am 2 years later about to graduate with a BS in computer science and well on my way to starting a PhD. I know doing a PhD is order of magnitude more stressful and difficult than undergrad, but I feel that now that I have matured some and learned to cope with my conditions I should be able to get through this.

Hey frosty, I'm so sorry the last few years have been so rough. Mental illness, like a lot of chronic issues, can so often go unnoticed/ignored because people can't SEE that you're ill (as you know, of course). I'm really glad you were able to work through your period of significant struggle and come out with your degree in hand. Congratulations!! As I also suffer from anxiety/panic disorder, the coping mechanisms you have been learning should be really helpful as you start your PhD. Over the years I've learned some exercises that help keep my anxiety in check when I'm having an attack - I'd be happy to share them if you're interested (though what works for one person doesn't always work for another).

@orange turtle, thanks for your input - those are great suggestions!

I was actually officially diagnosed two weeks ago, and am really happy to be starting an actual treatment regimen. Here's hoping I find a doc on campus who takes fibromyalgia seriously!

[Neek]

On 5/8/2017 at 0:20 PM, MaytheSchwartzBeWithYou said:

I was actually officially diagnosed two weeks ago, and am really happy to be starting an actual treatment regimen. Here's hoping I find a doc on campus who takes fibromyalgia seriously!

glad you have some clarity, or at least as much as a fibro diagnosis can provide. Just curious, what treatment regimen are you taking? I didn't know there was actually anything that could be done for fibromyalgia. (also if this is too personal, just say so, or you can pm me).

[MaytheSchwartzBeWithYou]

On 5/21/2017 at 8:43 PM, Neek said:

glad you have some clarity, or at least as much as a fibro diagnosis can provide. Just curious, what treatment regimen are you taking? I didn't know there was actually anything that could be done for fibromyalgia. (also if this is too personal, just say so, or you can pm me).

Hey Neek, I'm happy to tell you my current treatment, though admittedly there isn't much to tell just yet - I'm supposed to check with my doctor every month and potentially try out new things if what I'm doing isn't working. As of now, I'm on a prescription dose of Meloxicam (Ibuprofen) to "take the edge off," and I'm also supposed to try to build up an exercise/relaxation pattern over time. I'm not on a very rigorous treatment plan, but I don't want to take any serious medication if I don't need it. I may need a sleep aid in the near future (fibro can cause sleep disturbances), but I'm trying to do without that, too.

There isn't a TON you can do about fibro as of now, though there are three FDA-approved drugs to treat it. There are also a number of other drugs - especially SSRIs, and things like Gabapentin - that were created for other purposes but also help with nerve pain. Opiates are LAST resorts. Outside of medication, getting a lot of rest, regular exercise, and stress reduction are all really important. It's amazing how interconnected the body's systems are, especially when it comes to hormones and sensory perception. 

I hope you're doing well! 

[Neek]

On 5/23/2017 at 9:41 PM, MaytheSchwartzBeWithYou said:

Hey Neek, I'm happy to tell you my current treatment, though admittedly there isn't much to tell just yet - I'm supposed to check with my doctor every month and potentially try out new things if what I'm doing isn't working. As of now, I'm on a prescription dose of Meloxicam (Ibuprofen) to "take the edge off," and I'm also supposed to try to build up an exercise/relaxation pattern over time. I'm not on a very rigorous treatment plan, but I don't want to take any serious medication if I don't need it. I may need a sleep aid in the near future (fibro can cause sleep disturbances), but I'm trying to do without that, too.

There isn't a TON you can do about fibro as of now, though there are three FDA-approved drugs to treat it. There are also a number of other drugs - especially SSRIs, and things like Gabapentin - that were created for other purposes but also help with nerve pain. Opiates are LAST resorts. Outside of medication, getting a lot of rest, regular exercise, and stress reduction are all really important. It's amazing how interconnected the body's systems are, especially when it comes to hormones and sensory perception. 

I hope you're doing well! 

lol i am surviving. can't wait for the spring quarter to be over.

thanks for the info, it's interesting. I just recently found out someone i rock climb with has fibro....he says the exercise, esp of climbing really helps with the pain, which explains how he is so consistent about daily exercise...but then I find it difficult to have the energy to do that all the time even if when i do do it, it seems helpful. He also said that something that really helped him was a medication that prevents REM sleep? i mean...i thought we as humans needed REM for something, but apparently that is when for some people with fibro your muscles over-fire or something and that blocking that helps reduce pain. (sorry this is not me trying to be that person making suggestions, just thinking out loud in relation to what you said).

have definitely heard about hormone + sensory perception---apparently estrogen magnifies how brains interpret/experience pain. that explains a lot in my case...

health things do feel very systemic...have perpetually had a hard time getting clear answers about what is going on in my body through biomedical tests but through experience can clearly feel connections and know when things are getting out of balance.

 

Edited May 30, 2017 by Neek

[Le Chat]

I'm not in a PhD program yet, I'm starting a pre-doctoral research Master's that is in a cohort model though, so I can only really share what others have recommended to me. I have multiple conditions that like to flare up in cycles, I have at times frequented the ER and hospital.

Really the best advice I can give is knowing your limits- saying no when needed, not trying to do it all, getting help when you need it. Disability services should be able to work with you, and you can probably also work on an individual basis with your program supervisors.

Getting enough sleep, maintaining a balanced schedule, and keeping up with medical stuff is also important. I have flexible hours to allow me to do medical stuff when needed, and I HIGHLY EMPHASIZE getting rest in my own life. I don't have a hoppin' social life and stay in most weekends, but it allows me to do what I love. And no matter how busy I am, I really try to maintain a consistent schedule (sleep,eating,meds,rest) to eliminate flares.

Lastly, look for chronic illness support groups in your school or region, which are often in an online format. These can be extremely helpful with advice from people who have done it before.

I applaud you for pursuing a Ph.D! It definitely can be done by people with chronic illness/disabilities!

[Nanolol]

Me! I am a 2nd year PhD student with Multiple Sclerosis. 

My best advice to you: get registered with Accessibility Services earlier rather than later. They will help you get accommodations in order for you to succeed, such as extended time for exams (including qualifying exams), a notetaker, alternative editions of texts, etc.

Additionally, as others have mentioned: feel free to say no. Speak to your medical provider regarding symptom management.

 

 

[hats]

I waited to apply to PhD programs until my health was under control. I decided this in the September before applying. So I was making health decisions for the next year, and the years of PhD stuff after that.

So, of course, by the October after I started my program, 13 months after I'd decided to apply, I was solidly within the grasp of the second-to-worst flare-up I've had yet. (At least this one wasn't life-threatening.) It's been a couple years, but I still don't know how thoroughly I'll get my capabilities back, or if my health will be permanently worse, and my limitations lastingly more severe, from now on. 

Having health issues among a bunch of young, healthy people is isolating. Many bonding activities seem to involve midnight biking or hiking through mountains. I can't do those things. When I try to walk between classes with people, I can ask for people to slow down until I'm blue in the face, but everyone keeps walking so fast that I have to go to the bathroom and do breathing exercises before I can safely go to class. (I'm not even a slow walker, I'm a medium walker! I can't walk fast, but somehow I seem to be in a group where a ten percent reduction in speed is not done.) Of course, there are a couple horrible people around. The worst offender both makes the most microaggressive comments and pats my arm and effusively compliments my bravery every time I raise disability issues when other people have done something harmful.

My regional interest group within the department is difficult, too. There's one person, the year below me, who wants to be friends with me. She has an anger problem, which I am sorry for because it clearly results from real emotional pain, but which she manages in ways that I find troubling. Although she tries to be my friend, the way she does so doesn't work for me. There's broader stuff there, but the unfortunate thing is how she sometimes lands on my biggest insecurity about graduate school. To wit, I have this fear that through my laziness possibly exacerbated by my comparatively limited amount of energy, I won't be able to work hard enough to do this. (How lazy I actually am is up for question...but that's the thing about insecurities!) So unfortunately this person pokes that insecurity incessantly. Sometimes I am just in too much pain to sit up in bed, let alone concentrate, you know? But she'll send me texts where she marvels that I was so laid back as to have watched a tv show the week a paper was due, like wow, she could never manage that much time off from her work. I think she thinks she's being complimentary about my time management, but as for how I managed to watch one sit-com episode, well, I managed it because I was in too much pain to do anything else? She is protective of her anger problem—she thinks it's just a style people should adjust to—so "please stop yelling at me about my disability, even when your intentions are good" is likely to be poorly received. I'm sure I will find a way to handle it the next time it comes up—I can usually manage to be both clear and tactful, so that conversation should be a less big deal than I'm making it out to be in my head. But that I have to think about it at all is another way that I feel like just existing with disabilities makes other people think I'm being difficult on purpose.

I have a lot of better experiences, too, but I don't think anybody else in the program has a physical disability, so I'm glad to find this thread to share about some of the issues most healthy graduate students don't seem to get. Thanks for starting it!

Edited June 23, 2017 by hats
When I saw how long this was, I was like holy shoot I need to cut a hundred words out of this!

[Cycle]

I'm trying to finish (starting my 7th year, but it's more like halfway through my 5th because of medical leaves).  I'm so burnt out and have so little motivation left after all the alienation.  I miss being enthusiastic and believing I was a part of the scientific community and hope I get back to that state and get the ableist voices of my department out of my head.  Send help, lol.

[1996kayden]

I am going in knowing that I will have to take the first summer and the first semester of my second year off (maybe more...) to recover from major surgery. And possibly have a few smaller surgeries after that. The grad policy gives me one semester of medical leave and I am definitely worried about how this time off will impact my learning, my work, and applying for things like the NSF GRFP. Also worried what happens if I have complications and/or need more time to heal than the one-semester the grad policy gives me. I'm not sure how to tell my advisor that surprise! his new student is going to be MIA for the first summer and half of his second year... 

Anyone else had to take time off (a semester or more) and how did that go for you?