Saving Face with a Chronic Illness

Graduate School is full of overachieving people who care a lot about one thing – their research. That, and their perceived image with regards to their ability to face difficulties.

Crying or any expression of disability or needing accommodations to overcome disabilities (aka not always being 100% self-sufficient) is considered “weak” and people who engage in such are often considered as “not being suited for graduate school.” Therefore we are mainly a clan of somewhat anti-social stoics, who bottle up everything, and then get dead drunk to release it. There is some bizarre irony here that a bunch of scientists (biologists, no less) think binge drinking is a better alternative to crying if you want to let it all out!

As much as I recognize the idiotic nature of the culture, I have to admit that, for the most part, I am one of the stoics. I don’t binge drink to release tension, but I am certainly not particularly good at showing emotions either.

I have many faces, figuratively speaking, and I am very careful about what I show to whom. Part of it, I believe, is a trust issue – I have been burned before and I am careful to not get burned again. I find people (including therapists) are often incapable of understanding the complexity of emotion one might feel, and have the tendency to box you into one group or another, without recognizing that no box might truly fit you. I have found this experience frustrating to say the least, and not one I care to keep repeating. To add to this general tendency of the human population, the graduate school environment certainly seems to select for those who are so wrapped up in one thing – their science – that they are incapable of complex human bonding.

This combination of factors made it very difficult for me when I developed fibromyalgia as a Ph.D. student. I found myself fairly isolated and unable to really explain my condition to many people, including my boss, without feeling apologetic for developing a chronic illness. I am the first to admit that it is stupid to feel that way, but I suddenly felt the need to save face by making sure I am extra efficient with my time and trying not to outwardly show what the pain and exhaustion was doing to me.

The latter largely failed after a time when my mobility started declining. So then I turned to humor but still only told the closest people – my boss and immediate colleagues. They have been generally very nice about it, but I still refrain from truly sharing the impact the disease really has on me. Recently, I even talked about it in medical terms with one of my committee members, who was fairly nice and curious to learn more about the disease – I was proud of this because I wouldn’t have been able to have this discussion a year ago, but I didn’t have a choice now as we had to climb stairs and I was slower than this man some thirty years my senior. Yet, we talked about fibromyalgia as one might talk about a badly infected tooth that needs a root canal job.

Nobody can truly understand what it is like to live with a chronic pain condition unless they either have it themselves or know somebody very close who does (a spouse/partner, for instance).

So I continue to be unable to talk about the havoc that fibromyalgia has wrecked in my life, in person, with anybody other than my husband. I don’t expect this to change anytime soon. Yet I know that there are others like me, in grad school even, who are fighting their own chronic battles and they must all feel like me too. It is doing a disservice to them all if I just stay quiet and keep walking like a character in Metropolis. So I met myself halfway and started this blog. I have only shared it with a select few, but this is the start of me sharing my inner universe with the world outside.

Sometimes I wonder if starting this semi-anonymous blog is just another way to save face, to make up for an imaginary mistake that I did not choose to make. But then I think perhaps this is my way of accepting one of my many faces – the face that’s always in the shadow, the one that cannot be easily named, the one that shines only in the dark.

Featured image: Ruby Tuesday (11X14, oil on canvas)

Love,

Fibronacci

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13 thoughts on “Saving Face with a Chronic Illness

    1. Thank you so much! I’m honored that you liked both the post and the painting enough to reblog it. πŸ™‚

      At the same time, I am also sorry to hear that you have faced your own challenges in the world of academia and have felt compelled to leave. I do believe that there needs to be more resources and support outlets for academics out there, but to be honest, I do not see this happening anytime soon. There is a culture that keeps people needing such resources out of academia which does not help the people needing it who are already in it. I hope you have found happiness elsewhere. ❀ Peace and Hugs!

      Liked by 1 person

  1. Giving fibro a face is very important, even if it is a face in the shadows. Because even if you only tell one person, that person now has a better understanding of the struggle. And then that person shares his understanding with the next person. And so we all eventually learn.

    Do not feel compelled to share more than you want. That’s your decision and your decision alone. And don’t beat yourself up about your shadowy existence — you’d be surprised at the number of people who are hiding something. Something they think others won’t understand.

    It wasn’t easy for me to finally be honest about how difficult it is to deal with constant pain, but I feel better for it. And I don’t have to wear a mask anymore, which is so heavy and just exhausting. But then, I rarely have to face the public, so when I do, I’m able to wear that mask without too much effort.

    As long as you have one place, with one person, where you don’t have to constantly wear your mask, you’ll be fine. πŸ™‚

    Liked by 1 person

    1. Thank you so much for the kindness in your thoughts! It feels heartening to have friends who understand the struggle. You are so right about all that you said – especially about the public mask being heavy and exhausting, for it sure is! I feel lucky to have a home where I can take it off and just collapse if I need to. πŸ™‚

      I have been trying to be better about sharing my pain with others, but it often doesn’t go very well. Like my interaction with one my professors (a committee member) that I described in the post . . . I didn’t say it explicitly in the post itself, but it ended with him asking me “so you can’t just get used to it and ignore it?” The way that made me feel is a post by itself, LOL! But when people say things like that after you feel proud for just trying to open up, it feels like the fire you were trying to approach cautiously is already jumping up and lapping at you. It is hard to explain the emotional effects of fibromyalgia to someone who cannot even fathom the physical nature of the illness!

      Then again, it is precisely because of such incidents that I feel that there needs to be more understanding about these sorts of invisible illnesses. That’s the reason I have started writing about various aspects of living with it and trying to use analogies to make others understand. But just sharing this with my closest friends and family has been an ordeal for me as I hate to worry people. As for opening up in general, that will have to wait. It is difficult to be honest with people who hold the key to your future career, esp when start to view you as “weak” and judge you for reasons outside of your control, that they barely make an attempt to understand. I feel like I need to wear a mask just so I don’t blow my chances at getting a job and continue to pay my medical bills!!

      But one day I still hope to be able to open up more to the world as you have done. I do believe that will probably lighten my existence some. I am so happy that you have been able to find some peace among all the pain by doing so. You are my inspiration! πŸ™‚ ❀ Love and hugs!!

      Liked by 1 person

  2. β€œso you can’t just get used to it and ignore it?”

    In my head, I just punched this professor in the face — really, really hard — and asked him the same question. I suffer from TMJ pain (jaw joints), which is also invisible. And so I also rely a lot on analogies. So, if he had asked me that question, the rational part of me would have answered: Have you ever had a toothache? Needed a cavity filled or a root canal? Do you know what that kind of pain feels like? Now, do you think it would be easy to ignore that kind of pain in every one of your teeth, 24 hours a day, 365 days a year?

    Perhaps if they made wheelchairs for heads, my pain would be better illustrated to the public. πŸ™‚

    Art is a great way to communicate analogies, and it’s good therapy, too. πŸ™‚

    Liked by 2 people

    1. Haha!! Yeah, I know right?!? I totally punched him in my head too! In reality though, I laughed it off and gave a cynical “no,” but honestly I don’t even know how to begin explaining the kind of pain this is. On my “regular” days, the best I can come to describe it is like having the flu that never leaves. And the fatigue/exhaustion can be akin to a chemo patient. But both of these relatively simple concepts seem curiously inaccessible to people. Thanks to the flu shot, they haven’t had a real flu in years, and most people don’t know what chemo does to people. I have tried the video game reference (here >> https://fibronacciblog.wordpress.com/2016/03/12/what-does-it-feel-like-to-have-fibromyalgia/), but not sure how much people get that if they’re not gamers. So then I am lost as far as words as concerned. So I turn to art . . . and you are so right!! It can definitely express what words cannot and it feels good just to let it out! πŸ™‚

      I am really sorry to hear about your TMJ pains. I have a somewhat arthritic TMJ myself and fibro flares also often include TMJ pains for me, so I can completely understand the sock in the jaw feel. Sending you lots of love and positive thoughts!! ❀

      Liked by 1 person

      1. Another analogy I like to use is that, although I’m under 55, in pain years, I’m at least 90 years old. Of course, only 90-year-olds understand that one. πŸ™‚ But since pain makes time go by so slowly, it’s like I’m living a week in just one day. (And sometimes even longer.)

        It’s also little things, like when someone asks me how I am, I usually say, “I’m still breathing.” And I tell my friends, I’m still breathing, but I’m not happy about it. But I freely admit that it’s taken a very long time to find my sense of humor, which, unfortunately, isn’t always around to comfort me. It’s just that people seem to connect easier with humor, which then makes it easier to educate about pain.

        I used to work as a paralegal, and even being interested in the law wasn’t enough to distract me from the pain on most days. How you describe fibro is very much how I felt — slogging through the day, always pushing myself past my limits because there didn’t seem to be any other options. No doubt you have a lot of strength and courage to live like this, and I salute your efforts. I can’t tell you how boring it is to be on disability, so you should try to avoid that as long as possible. However, I waited about 20 years, and I can’t be sure, but I think I waited too long. Constant pain takes its toll, demands a price, and there comes a time when that price has to be paid.

        It really is all about quality of life. And everyone has a different definition for that. Take care. πŸ™‚

        Liked by 1 person

    2. Really like your analogy about the pain years, and your honest reply to “how are you feeling.” I might try to be more honest one day to the latter question as well. One step at a time towards that for now! πŸ™‚

      20 years is a very long time to live in constant pain! No doubt it’s exacted its toll on you. I hope the sustained rest brings you some measure of relief. You must have had quite a passion for law for pushing through for so long! I have barely existed a tenth of the time as you living in that kind of pain and already thinking of alternative career options to reduce work hours and build in better work-life balance minus the associated guilt that’s a trademark of academic science.

      Quality of life is indeed what it is all about! And we are all trying our best to achieve it in all different ways. I hope humor can help you connect more easily with the people around you and help you get there another step a day. I know it certainly helps me stay afloat when there’s little else to float on. πŸ™‚

      Thank you for much for extending your friendship and support towards me on this issue. It’s been a rough week and it means the world to me. ❀ Have a wonderful day!

      Liked by 1 person

  3. Wow. Thank you for writing this. I actually never made it to grad school, thanks to an undiagnosed chronic illness that made my muscles so stiff in the middle of undergrad I could hardly eat or move. As I’d gotten worse and worse during undergrad, I kept trying to get the doctors and therapists to help me, and kept being told, just ignore the pain and muscle tension, there’s no reason for it. So when I finally crashed, I wasn’t even able to see at first that I needed to quit college and rest, science had been my main “medicine” for ignoring all the pain and medical difficulties in my life. I loved lab, for me having something useful to be precise about was so therapeutic/stress relieving for me. So I went to the disability accommodations office, hoping I could just rearrange my previous accommodations to fit the fact the my health had gotten worse, and I asked the lady there if maybe I should just go home. She gave me the biggest guilt trip ever for even considering such I thing, and told me to go ask my academic advisor which class to drop since I was too ill to handle even 12 credits. If he hadn’t noticed that I looked a lot more ill than usual and advised that I drop all of my classes and spend the rest of the semester at home resting and figuring out what was wrong, I don’t know how I would have realized I needed to just take care of my body and find a doctor who would actually take me seriously. And yes, I’m really, really lucky my academic advisor believed me when i told him I was sick – I had ditched my previous academic advisor the semester before because even after I had explained that I might need to take fewer classes the next semester due pain making it hard to write, he gave me a big lecture on how that would be lazy and I would never graduate.

    More and more, I think college in general pushes even the healthy people to overwork their bodies, and do stupid things, like the binge drinking you mentioned, in a desperate attempt to solve the problem.

    I also having been learning a lot about assistive devices which I used to help with brushing my teeth, etc. Maybe we could make working in a lab less exhausting/painful if someone made assistive devices for lab equipment?

    Liked by 2 people

  4. I am so sorry to hear about all your problems while an undergrad. That makes me really sad because we have relatively better disability accommodation schemes in place for undergrads than we do for grad students. 😦 I am glad, though, that you found somebody who took you seriously and advised you well. I had to be my own advisor and luckily, I had the unwavering support of my husband in whatever I chose to do. An undiagnosed illness is very difficult to explain. But even something like fibromyalgia was hard as hell to explain to my boss and co-workers, even in just medical/scientific terms. Part of the problem, I think, is that people are not willing to put forth the effort to learn more about it! I figure it is something that kind of scares them . . . or maybe because it is a relatively new diagnosis, they don’t yet believe it (?). Not really sure why, but that was certainly true of my boss who made a bizarre excuse for not reading a clinical review article on FM that I had sent him, along with an explanation of what was happening to me. All in all though, he’s been nice enough and is still allowing me to work at my pace, which I am grateful for.

    I definitely think that there is a place in graduate school for assistive devices. I work with an undergrad who is legally blind (though she can see large prints up close) due to albinism. She is determined to go to graduate school and is looking into all sorts of little “tricks” to help her out. Unfortunately, she is getting a very lukewarm response from the faculty and administration. Frankly, I think it’s because they don’t want to deal with the stuff that comes with handling somebody with disabilities; they’re comfortable in their current system and probably can’t even see how small changes can make a big difference for someone like her. So while I do think assistive devices are a fantastic idea, my hopes on them being actually introduced into the lab are somewhat low. Even if you can bring/buy these equipments yourself, there needs to be a change in perception that you are somehow a “bad investment” if you need such devices. In fact, it has nothing at all to do with your scientific capabilities! But that thought still needs to penetrate many of the top-level (read: old) faculty members I think.

    Liked by 2 people

  5. That’s sad that your boss wouldn’t even read the article!! The really bad thing about fibromyalgia is that I’ve heard of doctors misusing it as a diagnosis to give hypochondriacs to make them quit coming to the doctor. So I think that may make people think they don’t need to take it seriously. 😦

    I think many professors may also worry about safety – I was told that I couldn’t have permission to sit in the chemistry lab, even on days we weren’t using HCl or anything it’s the end of the world to spill in your lap, because everyone is so worried about lab safety. I guess when one student sits, the others will want to also, but surely at 18 years old the students are old enough to understand that chronic illnesses are different? Anyway, I think safety makes doing things differently in lab looked down upon sometimes, and maybe professors don’t want to be responsible if someone gets hurt.

    As for the “bad investment”, I wonder if they realize that by letting us get a graduate degree and work as scientists, they would be keeping us off of disability? after all, if the lab doesn’t want us because of our disabilities, what career do they think is going to take us? everyone wishes they had only healthy people to work with. If everyone with a disability or chronic illness was told they couldn’t have a job, the healthy people would have to pay more in taxes to support them.

    Liked by 1 person

    1. Wow, I am surprised to hear about the doctors using FM as a fake diagnosis to keep patients at bay! That is really irresponsible. They could have something much more serious and life-threatening that’s wrong with them, and they wouldn’t even know! And yes, that would definitely reduce the validity of FM as a true diagnosis. Irresponsible all the way around!

      You’ve brought up a great point about lab safety! There are a lot of liability issues that come with that, which could definitely make this tricky. We live in a very sue-happy country, and nobody wants a safety-related lawsuit on their hands! I think not letting you sit in for labs is pretty silly though; and that I believe, boils down to the instructor and how informed they are of the nature of your illness/disability. I know my legally blind friend made it through lots of labs where there was fire and chemicals involved – it just meant that the instructor for those labs had to keep an extra close eye on her to make sure everything is OK. And that last bit, having go a little extra way, may be what puts people off from wanting the chronically ill or disabled people in the lab too. Everybody (or at least most of the workforce) in science is overworked and underpaid and nobody wants to take on any extra responsibility that does not fall directly in line with their own career/project advancement. It is also a very fast paced world – the biomedical field anyway, where I work – and nobody wants to be slowed down. If you are slow in publishing your data, or if you are not the first to show something, it is very difficult to publish at all, and hence, hard to keep funding, and thus a job. The job/funding market is competitive enough so that humanitarian thoughts come second.

      You have made another great point, that by giving us jobs they are keeping us off living off their tax dollars!! That is golden, and something more employers should definitely recognize when they turn out applicants with disabilities. Now if only I could find a nice diplomatic way to put this to a future potential employer… πŸ˜‰

      Like

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