It’s a shameful secret of mine: I had, for so long, been estranged from my grandmother that when she died two years ago, I was more concerned with my mother’s and sister’s grief than my own loss, and aside from a night or two, didn’t feel like it was a loss. I was sad, sure, but so much of it was that I couldn’t stand the idea of Lily needing to be told she couldn’t talk to Grandma on the telephone for the sabbath, as she’d been doing most weeks for some time. (Describing death to someone who doesn’t actually understand time is hard.)
I knew my mom loved her own mother. I knew their relationship had not been as truly felt and pleasant as the mother-daughter relationship she and I have. The details…they’re more salacious than relevant, but they do sketch a life that had its mistakes. Personally, I harbored, since my early teens, a real scorn for my grandmother, who wanted to make my mom do things like remove any facial hair from Lily. I knew how hard her daily regimen was to maintain, and in my proto-feminist state was angry that we had to do anything more to make Lily conform to a society that was willing to reject her based on her appearance. Internally, I also knew that a pretty hair bow or perfect skin wouldn’t be enough to make Lily fit in, given her facial asymmetry and unusual speech patterns.
Part of me hated my grandmother for smoking while she was pregnant with my mom. My proto-biologist self learned in school that a girl baby is born with all of the egg cells her body will ever use, which meant that the carcinogens in cigarettes could have caused mutations to the egg that was my mom’s genetic contribution to my sister. (For the record, I don’t know, as a grown-up and professional biologist, whether this is actually possible. I can’t rule it out, based on my knowledge, but I’m not an expert in that area of biology.) It doesn’t help that I heard her speak with regret about smoking during her two pregnancies. It really, really doesn’t help that I saw her fear of my sister, her inability to find a way to connect herself to this unusual little girl – a little girl who loved her utterly. (Lily, always the creative storyteller, spun an interesting one while in junior high – a story about baking Christmas cookies with Grandma after school or during the weekend. The teachers believed her until my parents pointed out that (a) we’re Jewish and don’t celebrate Christmas, and (b) we lived several hundred miles away from the grandparents.)
Two years after my grandmother’s death, I am finally letting go of some of that hate and fear and mistrust, because my own chronic pain may be linked to one she felt for most of her life.
Chronic pain…well, it messes with you. It feels alienating, isolating. You want to hide it, because it’s such a clear departure from what other people see as normal, and you want to work through it, because you’re stronger than it, damn it. (See also: the brilliant Captain Awkward contributor Sweet Machine’s response to a letter writer; the spoon theory entry at Geek Feminism’s wiki.) Mine can keep me awake at night, which I’ve now heard called “painsomnia”. I’m glad that sometimes I can talk to my mom about this – her MS also causes her pain like mine, sometimes. My fibro causes weird neurological glitches like hers, sometimes.
I grieve, now, for the fact that she didn’t get that kind of comfort from her mom.
Look, I’ve had my problems with my grandmother. That’s clear. But I was floored when my mom told me that, in confiding and explaining to her mother the way she felt when she was newly diagnosed, that grandma basically said, “So what?” It’s only after these conversations Mom and I have had recently, in which we can be more open about our symptoms, that we’ve both realized that it might have been Grandma’s reality. She just either didn’t know she was hurting more than “normal,” or otherwise had some block to being able to be communicative about it (or seemingly empathetic). (Yes, I’m still upset about this now. How could you be so dismissive of your daughter’s suffering?)
It was during that same several month period that my mom revealed to me that Grandma had shared stories about having to crawl up the stairs when returning home from school, as a youngster (not sure if she was a child or pre-teen), because of her pain. Mom seemed to be expressing some concern that we could have done more to find out why Grandma’s osteoarthritis was so bad, possibly more painful than other people experience, before it was too late. We both wondered if maybe she had a form of rheumatoid arthritis, especially since there is known juvenile RA. My professor-mind boggles to think that Grandma was born before antibiotics were discovered/purified, or second wave feminism, or Israel; what challenges must have Depression-era, then WWII-era (Holocaust-era!), American medicine and society presented to a young woman struggling with chronic pain? (There’s this, ahem, “interesting” pattern of women’s pain/chronic pain being disbelieved/badly understood.)
Suddenly, the self-medicating with prescriptions and/or alcohol fits into an all-too-clear, all-too-relatable framework. Maybe Grandma didn’t know how to talk to her doctors, and was in the pain I had before I got medications that actually control my symptoms. Frankly, it’s chilling. I can’t say I don’t feel tempted, sometimes, to drink myself into a stupor just to avoid the pain. (Drinking even half a glass of wine with a fancy dinner out, though, can bring on headaches and other pain, so I have learned not to keep that fantasy around. Plus, y’know, history of problem drinking on both sides of the family and wanting to avoid THAT drama.) Maybe it was hard for her to be emotionally present because of her pain; maybe some of what I thought was overly controlling behavior or too strong a value on appearances was just an attempt to hold on to the parts of life that didn’t hurt.
My scientist-brain is ALL OVER THAT set of revelations, of course. Three generations of women with sort of neurological disorders? It’s the kind of thing those of us with any connection to studying genetics zero in on. Our diets are not super similar, we were born in different places and had different social stresses etc., and different ages of onset of symptoms – but three generations? That suggests something inherited. (Insert a revisitation of how I worry over having my own biological children.) I’m ashamed of it, but I feel mad to have lost her just when I became settled enough to dig into the professional information that’s out there, to figure out what’s inside our bodies, linking us together. (Insert a revisitation of how glad I am that my main interest is NOT studying human biology. It’s so intense!)
Beyond my scientist-brain, well, this all makes me feel…honestly, a million feelings. It reframes this relationship that was not super, makes me regretful that I didn’t ask more stories about Grandma’s childhood. It makes me sad I didn’t know how to help bridge the gap between what must have been her fears about having children and grandchildren with pain or other qualities stigmatized by society and the reality of Lily’s life, or mine. (For all the venting and whining I do here, I really am in a pretty good place in my life and had an impressively good childhood. Ditto Lily.) Hell, I even wish I could have said more to her about being a scientist and how I could help her talk to her doctors! Or to have spoken to the nurses on duty in the places she was living, to provide the personal but informed details that make it easier to care for patients.
I am so, so sad for my mom; her support has been so amazingly important to me, through my diagnosis and learning how to move forward, and I know there’s got to be some sort of wound in her that she didn’t get that from her mom. It grieves me to think that I may also not be strong enough to, say, share this post with her (as of posting, I haven’t given my parents the blog URL), or to share these thoughts – whatever comfort I might be able to give in my own empathy might not outweigh her pain at reliving losing her mom, in all these days.
This whole story has been brought up to my memory by two things: the anniversary of my grandmother’s passing, and my sister having a change to her medication prescribed by her neurologist. (It’s causing not-unexpected and frustrating side effects, like making her sleepy all the time.) Having had some intended and unintended changes to my own medication regime in the past two years, I know – now – how much it can make you feel bad, or weird, or SLEEPY, or just like everything is a little bit off. It makes me feel bad about having not been gentler with her, before. (My emotions dictate that this “before” must be read as up until and including the past two years.) Lily and Grandma, both, in my memory, are associated from childhood with containers full of pills needed to cope with their bodies. I’ve got my own containers, now.
My life today is nothing like I dreamed it would be, except that I have a nuclear family I love and I do science. I’m still getting used to the idea that there’s something about my body that means I have a lot of physical pain in my life, including realizing how it links me to others in ways I’d never thought possible. I’m glad that at her funeral, I did get up to speak – for myself and for Lily, who probably won’t ever be able to actually understand but will ask if Grandma can come over at every holiday – and was able to say that Grandma valued what was beautiful. We didn’t get along well, but I think it’s okay to remember that she shared her stash of gumdrops with me and saved the Readers Digest magazines so I could read the humor collections. In her own way, she was trying to help me have the happiness of the pretty world she admired and wanted to inhabit.
And yeah, right now? I kind of miss my grandma. I wish I had known her better.
Scenes from an active mind feeling fractured; this post does not flow well because my thoughts are not flowing well right now, but I think…I think I want to say it all, this way, anyways.
I’ve been in pain a lot recently – emotional as well as physical, and at times it’s felt…dangerous. Dangerously alone, fighting for control of situations I can’t control. What I crave is the safety to cry, to be held just tightly enough in the arms of a lover that I don’t have to think in order to feel myself not being alone, but gently enough that I have space to sob until my emotional pain, somehow, becomes physical, and fades.
Of course, I can’t have that; it’s magical thinking, I’m single, when I cry my sinuses fill almost immediately.
When it does come, catharsis comes at bad times, very often late at night, adding to the difficulty that is sleep. (I’ve been having nightmares recently, and there seems to be clinical evidence that sleep is disrupted in people with fibro.) It’s a horrible boom and bust: can’t fall asleep due to physical pain or anxiety, can’t get out of bed until late because of the need for sleep, not sleepy the next night when it’s normal bedtime because of sleeping in.
The pain was really bad while I was reading an amazing book – The Empathy Exams, by Leslie Jamison. It’s a powerful collection of essays, exploring, yes, empathy, but through lenses of pain (chosen and unchosen), incarceration, pushing yourself to the limits of endurance. It touched my sense of pain really deeply, evoked too much sympathy or empathy or whatever; I felt querulous and depressed while reading it, while simultaneously intellectually stimulated and relieved at recognition.
The pain is opposite around most of my friends; not everyone knows about the fibro, and I don’t feel able to be truly open and honest about my symptoms with more. Facebook can feel like a minefield: new pregnancies and births remind me that I’m aging and now have a chronic health condition that might preclude pregnancy or childbirth (LONG wished-for); weddings and vacations with friends can sometimes sting, alone as I feel (and as worried about money as I am). Someone said something about realizing that health is wealth, recently, as so many people share platitudes in graphic form about their luck or fortune at being healthy…and I am concealing a chronic condition.
Of course, all of the sponsored ads and posts from the few support groups/fibro/chronic illness/invisible illness groups I’ve joined? Sometimes they remind me that I’m not doing so badly – I’m still working full time, I’m not yet charged with Lily’s care, right now those I love most dearly are alive. I can afford to live in a place where I feel safe and comfortable, have health care from my job, and I can pay for my medications and health care.
AND – it MUST be said – I am still capable of being delighted by the good news and celebrating with my beloved chosen family and less close friends the wonderful events in their lives. I can support friends who are learning to accept themselves or others through the lenses of those platitudes, or who are trying to create more joy than sorrow by expressing positives. This is all possible, devoid of the jealousy or bitterness about my lack that I am currently fighting. Sometimes it’s closer to a 95%/5% YAY/BOO balance, but that I can handle – then I can join in the cheering while hiding my own pain, which is totally appropriate. Everyone does it.
It’s hard to think of yourself as lovable when you’re this deep in pain and so socially isolated that you sink into it psychologically. I’m never quite sure if I lack the energy to go out and be social, or if I think I will lack the energy and miscalculate, or (and this is the real fear) if I think I will lack the energy and that thinking causes my body to act as though I don’t have the energy. Walking to work in the morning feels awful, almost always, but I feel better several hours later, which adds to the confusion about whether I should rest or exercise during these phases.
Which leaves me here: locking into my own mind, hearing my jerkbrain insist that if I had any chance of finding or meriting love BEFORE – when I was already unsteady in myself as a genetically biracial woman raised only knowing half of the family, Jewish and valuing that, daughter of a woman with a degenerative neurological disease that THANKFULLY is held at bay by drugs, and big sister to Lily, complicated if wonderful person that she is. Now, I have fibro. Yeah, dating sure is fun. (Insert a rather sour expression here.) Feeling like a failure at dating is hard to stave off when you haven’t figured out how to leave the pain behind. I remember venting to a friend that nobody would want to have sex with a woman who needs to wear gloves at night during the winter in order to avoid finger joint pain; I know that I weigh more than I might otherwise because of the challenges of physical pain from exercise, medications, and strong food cravings that may be partly shaped by the fibro and/or the meds.
A variation of my daydream-nightmares is that I fail to find a partner, fail to keep a job or earn enough salary to support a family – because Lily is my family, and I need to be able to support her. One reason I seem to constantly be pushing my diagnosis away is that I can’t believe that after 30 years of life with Lily, I am no longer the healthy one with the brilliant career path possible. I love the work I do and find it to be incredibly important, but I know it’s less valued – intellectually, financially, and socially – than the job I had been aiming for.
I know I need to be working with a therapist because not only do I need to have help in handling this. I don’t want to. It takes time and money, it takes opening myself up again (AGAIN) to a new person. I don’t want to go to a therapist because I want to feel normal. Normal people may not actually manage their emotions perfectly, but there’s at least a facade of managing.
It’s hard to talk to people about it because I have empathy that they don’t expect. I understand something about the morning sickness of pregnancy because I’ve spent months vomiting on a daily basis. I understand something about toddler behavior because my sister is developmentally locked, in part, at that age. When I try to express this, I am sometimes rebuffed. I am afraid of that, so I hold back. Sometimes being smart enough to see the connections hurts, when people on the other side of those potential connections do not see, or do not want, to connect. (Don’t you love my elitism? Yes, I work to moderate most of it. Some of it is my philosophical preference.)
I know I am managing to proceed with my life, out of control as it feels. I know that the fracture lines are imagined or felt but not concrete, even if the pain is, very often, quite real. I hope it’s okay to say all of this; I need to be able to talk about it somehow.
I just read this amazing personal essay on The Toast, which I enjoy a lot, mostly for the stuff that’s silly.
My friend sent me the link, asking whether I’d seen it. She warned me not to read it at work, because I’d probably start crying. Smart, smart lady that I am, I started reading it while waiting for my public transit trip to work. I’ve had some emotional ups and downs recently, and felt…mildly depressed. Next thing I know, I’m standing on the sidewalk suppressing feelings of guilt, shame, panic, regret, anxiety.
Take that as my own “trigger warning,” or content note, if you’re like me: feeling like maybe you can’t have children, despite your deep desire (and biological signals) to have children, because of your life. That’s true enough for so many of us sibs, I know, having those conversations with ourselves; I’ve talked about it here! But I haven’t talked about the new fears, the ones that came with the fibromyalgia diagnosis. Can I consider pregnancy if I need multiple daily prescription drugs to control my headaches? Could I even consider adopting or fostering, given the periodic fatigue? (Which reminds me: I’ve been away from the blog a bit recently in part because I’m at the end of my semester and the grading and student emails and meetings and…well, it’s the end of the semester and I’ve been exhausted and unwilling to talk more than I have to all day at work. That said? Work seems to be going well, for now.)
I should give you the link! It’s by Anna Andersen, and it is entitled “Childless by Some Choice: Parenting and Mental Illness”. The author talks frankly about her nearly lifelong entanglement with bipolar disorder…and her more recent diagnosis with fibromyalgia. It was totally heartwrenching. I cried for a long time, in the privacy of my own home.
I don’t much know what to say, other than what I’ve said here, for now. I have grading to do still tonight, and I’m still feeling that bit of super-run-down that means I could sleep for 14 hours and wake up feeling tired, and I probably will hit that in a few days. I have a ton of new things in my mind about Lily, too, that I’d love to write here – happy stories and wonderful moments, not just sad stuff, which is GREAT. Maybe in a few weeks (fingers crossed).
I’ve been thinking about this topic for awhile, and after reading (and, okay, responding to) a Captain Awkward reader letter about science, jobs, and career/life fulfillment, and after the news that the US Supreme Court has deemed most of the Affordable Care Act to be constitutional, I thought…maybe I’d put down a few thoughts here.
Growing up, I always understood “the American Dream” to be this: work hard, and your success will be rewarded. Study in school, go to college, and you can get a job that lets you support yourself and your family without worry for the future. Talent and innovation will be rewarded. Laziness will not. Failure is okay if you keep trying – you won’t get ahead by failing, but you won’t lose your dignity if you’ve given your all, honestly, in pursuit of your dreams.
There are two strands of thought I want to follow:
(1) Academic achievement is undervalued in the United States. In our current strained economy, it is astonishing that talented, bright, accomplished PhD holders can’t find jobs, and that the jobs they do find – usually hard won – may not pay the bills, including health insurance costs, as employer-provided health coverage is a benefit not provided to some college instructors. This, while we struggle with our students not keeping pace with the science, technology, and interpersonal skill that the changing economy demands, and which these PhDs are qualified to teach.
(2) The cost of a basic safe and healthy life is too high for too many people in our country to claim.
The United States is in the throes of campaign season for our upcoming 2012 national/presidential elections. Our Supreme Court has recently decided on constitutionality questions including whether recently passed health care reform law violates our Constitution, marriage equality, and how money gets used in politics. Our economy is formally not in recession, I gather, but we – and a lot of the rest of the world – have a lot to do to clean up after some of our recent financial problems. Pundits are talking about income inequality and the collapse of the middle class, and there’s a weird tension about “we need jobs” against “we can’t spend any money, even for jobs”.
I’m a scientist, and I like using data to answer questions and explain things that I find striking. I like the idea of using data patterns to help establish policy. My opinion is that the important data here are the stories – stories that are anecdotes on their own, but can add up to quantitative data.
So here’s my story:
I grew up in a loving, supportive home. My folks encouraged me to do well in school, and helped me to do it. (I have the red-penned papers to prove it!) After graduating from a prestigious college which granted me merit scholarships but required a reasonable loan, I went to grad school and earned a doctorate in biology. I found a job, coming out of my graduate work, doing the research I love and am good at. During that job, I struggled with my health, and ended up with a diagnosis of fibromyalgia during an unpaid medical leave.
Right now, I am in danger of not being able to pay my bills.
My employment status had to change due (at least in part) to some technicalities that actually have nothing to do with my health, so I no longer have employer-subsidized health insurance. (This would apply to anyone in my kind of job who needed extra time to work on a project, if that time were not exactly one year.) I was eligible for COBRA, and signed up, so I am still covered. I am taking multiple medications to help control my joint and head pain and nausea (I am vomiting one to several times a day, which my newest prescription helps moderate), and have both a primary care physician and a rheumatologist monitoring me (and might need to go back to the neurologist). It’s clear that having coverage is extremely important. What that means is that I’m paying a scary amount maintain my health insurance, every month. (For what it’s worth? $750 per month. And I live in a place where that can be rent for an apartment for a month.) (Also, with my shiny pretty PhD, I apparently earn less than the median income (see Table A) in this country…as of 2009. I should make something around the median next year, due to a raise, although I am told to expect an increased cost of living where I will have to live for this job.)
This isn’t how I imagined my life. Didn’t I do everything right? How is it that I achieved what most people in my country understand to be one of the pinnacles of achievement – a PhD – and I have trouble paying my bills? How is it that I make less, after all of this schooling and work, than a lot of people in other fields who have earned a bachelor’s degree? (Please note that I am happy that other people make money, and I really don’t have an interest in making very much more than I do. I just find it fascinating that my credentials are both highly esteemed, in my title and the respect people express when they hear it, and yet not particularly valued, in terms of my salary and the cultural disrespect for professors and professional scientists as amoral and tending to indoctrination.) I have ideas of my own, and agree with some of the ideas espoused by scholars and non-professional observers, but I remain a bit bewildered.
Why do I feel like my American dream can’t come true?
Look, I know that my family is a bit unusual, in a lot of ways, including our collective medical needs. But we are also like many (most? all?) families in the United States: we work, we play, we try to be good citizens and friends and people, to give back where we can and to pull our own weight.
And yet my family and I are not unusual: we struggle to afford health insurance, and sometimes to pay other bills. (Sometimes we struggle to pay for other bills because we prioritize spending on health insurance.) There’s a stat in the CHE article I linked above, from the USDA: In 2010, a total of 44 million people nationally received food stamps or some other form of public aid. We’re a nation of ~310 million. We’re a relatively rich nation. It’s mind-boggling to me that we should have 14% of our population in need of help – more than one in ten. According to the US government, nearly 50 million Americans do not have health insurance, poverty is higher than at any point in nearly 20 years, and wages are, in effect, declining.
I don’t have the heart, today, to talk about the disproportionate effects of the current system on women, people of color, people with disabilities, people who don’t fit into the gender binary or are otherwise sexual minorities (I’ve now seen this described as the QUILTBAG community), and people (like me, and like my sister, and like people I know and love) who stand at the intersection of one or more of those groups. (Or the other issues that are described in this comic that I don’t totally disagree with.)
I am thankful that I am so lucky: despite struggling with my current job during my diagnostic process, I found a new job that I should be able to handle, and it will provide health insurance for me with a very reasonable contribution on my part. My job should better position me to do what I can to help give back: to teach, to volunteer, to do good science that furthers our common knowledge and promotes progress. I am hopeful that the changes in our legislation to reform our health care system help us to make progress, and help people who need and want health coverage to get it. I am hopeful that other changes that are in progress or in reach can help make the American dream achievable for all Americans, including those we welcome from other places. My friends – including small business owners and fellow academics – are all okay, for now, as are my family.
One of my friends was told about this fascinating resource by one of her health care providers, and passed it on to me: The Weather Channel has a prediction page for aches and pains. They provide a daily and ten-day out forecast of how much pain you might experience if you have a pressure, humidity, etc. sensitive condition. Check it out here.
I woke up today after a bad fibromyalgia day yesterday – vertigo, on the verge of a headache that was either migraine or tension, joint pain (jaw, elbow, finger, knee), and the requisite nausea – not feeling optimistic. I had a very hard time sleeping, worse than usual, and I’m not entirely sure why. Frankly, I hadn’t been sure why yesterday was so bad! I just remembered to look at the aches and pains forecast for my area, though, and today’s rated a 6 out of 10. Maybe I’m more sensitive to weather patterns I hadn’t been tracking than I suspected. (Hence, not tracking them.)
Hopefully it’s useful to you, too!
To borrow from a languishing internet meme: my fibromyalgia, let me show you it.
Seriously, though, today is National Fibromyalgia Awareness Day here in the United States. But just saying it doesn’t help you be aware of it in any significant way, so let me tell you my story, so that you’ll have at least one person’s experiences in your head.
First, a note: fibro has this lingering stigma of being a made-up condition. That’s not what all doctors think – and in particular, the rheumatology community acknowledges it as A Thing That Exists. It’s just been hard to understand, particularly since it depends on the subjective assessment of pain.
Okay, moving on.
For me, the early signs probably emerged during my bout with Valley Fever, back in 2005. I’d had my share of winter viral infections as a kid, and assumed it was just influenza – fever, chills, body aches – until, a few weeks into it, pretty much every inch of my skin itched. Happily, the student health nurse I saw recognized it immediately as an abnormal presentation of Valley Fever: after the initial fight, that looks like the flu, my body mounted an allergic response to the fungus. This was about halfway through my PhD, and so I just rested as best I could, got back to work and life as quickly as possible, and moved on.
That’s probably when I started to feel tired all of the time, though. The feeling that I just wasn’t rested became bad enough a year or two later that I had the doctors check my blood sugar (I have a high risk of diabetes on both sides of my family) and other general health markers. My friends wrote it off to stress; they assured me that when I had finished my PhD, I’d feel better. The stress probably also caused me to feel sick – fever, congestion, aches, etc. – about once a month for the last two years of my doctoral work. (A psychologist I was seeing at the time, though, wondered if I might have chronic fatigue syndrome.)
Fast forward to the summer of 2011: I had a sudden onset fever and just felt horrific. By phone, my doctor told me to take a certain amount of Advil, assured me that it was just a virus and I’d feel better in a couple of days. I didn’t. They did bloodwork. Turns out I had parvovirus – and my body’s response was so intense that I got a false positive for mono! That’s when I started to really feel tired all of the time, and when I realized that I’d been getting more frequent migraines that spring, and my eyes seemed to be bothered by light more than they used to. The parvo was almost certainly the straw that broke the camel’s back, so to speak.
I kind of wrote all of that off to stress from work not going well and family stuff (Lily was in the hospital – twice – and Dad broke his ankle that summer). Until I got viral bronchitis in the fall, which turned into bacterial bronchitis, which turned into a sinus infection, and I was wiped out and burned out and scared. I asked my doctor to start doing some blood tests to assess my immune system – Lily’s psoriasis and Mom’s multiple sclerosis are both risk factors for me – and something weird showed up that my doctor didn’t feel comfortable interpreting, and she sent me off to a specialist. (This happened between September and December.)
The pain in my hands started when I called that allergy immunologist to follow up on the bloodwork. She did more bloodwork, had me to scratch tests and injection tests (and boy, between my increasing body pain and fear of needles, was that an ordeal), and found nothing wrong with my immune system. She didn’t like that I hadn’t seen anyone for migraines, and sent me to a neurologist. He reassured me that I didn’t have any signs of MS but ordered an MRI just to be sure, and when I told him that my joint pain had gotten worse, he sent me to a rheumatologist. I should mention at this point that I had deteriorated so far that I was an emotional wreck and incapable of focus or logic at the levels I needed to sustain work, so I took an unpaid month off (February) to deal with my health. Much of this happened during that time, although it started in December.
The day I saw the rheumatologist, she was busy. She’s the chair of the department for the teaching hospital I was at, and the resident completing her training under the chair’s supervision saw me first. She was wonderful! She listened, asked questions, read my file. Then she started a physical exam. I was shocked and horrified at the intensity of pain I felt when she started pressing on various points of my body. She told me she thought it was fibromyalgia, and then took her notes to the doctor while I waited. The doctor came in a few minutes later, warm and cheerful, leading a group of three medical students when I gave permission. She was calm and certain about my having fibro. She ordered more bloodwork, as a last check, and a sleep study (fibro seems to disrupt the normal sleep cycle), and wrote prescriptions for physical therapy and water exercise in a heated pool. She also wrote a prescription for a painkiller (Celebrex, a common arthritis drug) and had me set up a followup visit, giving me a hug and saying that I would be okay as she led her students from the room.
I was bewildered and overwhelmed, but I went home and followed her suggestion of getting information from the Arthritis Foundation on fibromyalgia. I sent the website link to a friend while we chatted online about my appointment, and her response was, “OMG, Elysia – this is your life!” A few days later, the painkillers kicked in, and then I found a place to get physical therapy, and wow, did I start to feel better. I managed to get back to work, and to juggle my day job with looking for a position when this one ends. (I have just accepted a job, yay! And it’s one that focuses on data analysis, so it will be much easier, physically, to manage.)
This month – May – marks only three months since my diagnosis in February. My life now is better, but still odd, and I know I have a lot of work to do to process this diagnosis and what it means to say that I have fibromyalgia. But I do. Almost every day, I have some pain: my hands, my feet, my head. My eyes are so sensitive to light that I have to wear sunglasses most of the time, especially inside under fluorescent lights. I can’t sit or stand for extended periods of time without pain, or even carry grocery bags for very long. But I’m learning about my triggers, and working with – thankfully – doctors who really care, and the pain is manageable and bearable. Sometimes I have vertigo, and I now get one to two migraines a month instead of my one every one to three years.
As a biologist, of course, there’s more to my story than that: I have a burning desire to understand fibro. I have access to medical journals that are harder for the general public to access because I work for an academic institution, and I have been trained in how to read them. (My history of growing up with Lily and learning from that life how to ask questions and take notes during a doctor visit also help.) Fibro is…not very well understood. My rheumatologist described it as a disorder rather than a disease, because the symptoms may wax and wane, but no permanent damage is done. To the best of my abilities right now, the rest of what I have learned is this: in fibro, the body has an inappropriate response to pain. Early evidence suggests that there are chemicals that help transmit pain messages that are elevated in people with fibro relative to the rest of the population. This manifests in pain where none is warranted, and weird feelings as the body insists that it needs to heal itself. Sleep is when some of that healing happens, but that seems to have gone wrong, so fibro patients frequently have poor or disrupted sleep. I’m still fussing over the details, slowly, since I know it’s not healthy to fixate on this (and I’m a PhD, not an MD), but I feel like it’s important to be informed. Hopefully my early understanding is correct, but it might not be; it’s challenging to pick apart medical and scientific reports, especially if you’re emotionally invested in a topic!
So that’s my story – that’s how I arrived at my own current awareness of fibromyalgia. Hopefully it helps you, my dear readers, to be more aware of it, too, or if you are already aware of it, to find some commiseration.
I know I said something not too long ago about how my recent diagnosis with fibromyalgia had brought me face to face with internalized ableism, but I’ve actually been busy with work and haven’t returned to it yet. (The draft will take some thought to revise, and my energy is focused on a job search and a really huge data analysis.) I do have time for a less complex rumination on a small way in which this has manifested:
I am resisting getting my hair cut.
What does that have to do with internalized ableism? Well, it often hurts to stand up long enough to wash my hair while I am showering. (I need to invest in a padded nonskid mat, but I haven’t gotten there yet.) My tendency to headaches is made worse by the weight of my hair when it is up in a ponytail or bun. I get chilled more easily at work, where the air conditioner already makes my hands hurt if I don’t wear gloves, because my hair takes so long to air dry. (Hair dryers have never been something I’ve been able to use.)
The counterpoint? My hair is pretty when it’s long. Cutting it because it doesn’t fit well into my current sense of the fibro feels, somehow, like letting the fibro win. That, frankly, is ludicrous, and I attribute it to internalized ableism. I fear that I will be less attractive to men I’d like to date if I cut my hair, but I had a short haircut a couple of years ago and loved its look and feel, and got numerous complements. And I have gotten my hair cut almost every summer since I was 12 or 13, so it’s not like getting my hair cut now is really unusual. Despite this, I still feel like it’s giving in…that by keeping my hair long I am somehow standing strong, defiant in the face of a change in my body. The voice in my head says that if I can maintain this hairstyle, maybe it won’t hurt so much, or I’ll get used to the pain, and I can just convince myself that the sad and upsetting things that have happened over the last year either never happened, or don’t matter anymore. Naturally, that’s not the case. The bills, the prescriptions, the doctors’ notes…these are physical reminders, outside of the pain and light sensitivity that lurk in my daily life, that this is really happening.
The only legitimate reason I have to delay getting my hair cut is that money was tight for a bit, due to some weirdness with work and health insurance stuff. But there’s no reason not to go to a local chain for a simple cut, really, even if I crave the indulgence of getting my hair cut at a local salon where I went last fall to get a bit of a trim and a new style.
Funny how cultural narratives about female beauty have filtered into my brain this way…the fact that long hair is so often seen as feminine and sexy, and that “disability” is decidedly unsexy. It’s just a haircut, though – it doesn’t change the fibro, my worth as a human being, or anything else that’s, you know, actually important. It doesn’t change the odds of my getting a job or publishing my research or making friends! And it doesn’t change my relationship with my sister – about which, oh yes, there is much more to say. I will simply note here that she finally has hair long enough to put in a ponytail, and it curls in the cutest way, but she still has a bald spot from her psoriasis, and maybe I hadn’t really considered how my hairstyle reflects how I feel about us.