Later when it is illness is ‘defined’ there is a sense of relief to some extent because finally you have this label. I mean it is good, isn’t it? To have something to offer people as an explanation as to why I am always so tired. Why I cannot do all the things they want me to do. Why I have to pace myself. It isn’t so easy as all that. With the label comes the stigma. This idea of weakness. That if I use it that I should feel some shame about it. And you would not think that. But I found it very quickly the rules of the game when it came to Fibromyalgia … that there was this profound stigma with it in the medical community.
I think to some extent I would have been doomed to disappointment anyway. Given I had always thought so well of my childhood doctor that others simply did not do well in comparison. And there is this sort of inevitable sense of disillusionment that comes into play when you understand fully that they are all too human with all to human faults. And you have a chronic illness that is so stigmatized but also something that really is difficult to treat at the best of times… so you have to get used to the fact, doctor or no doctor you’re just not going to get better. It is just an unfortunate realization to know they cannot be of any help… when you had this childlike idea that they would be there for you, that even if there was no cure, they would have productive advice or understanding.
While there has been up to this point in my young life of all of 21 years frustrations with having no defined medical illness… aside from the hypermobility syndrome to explain my pain and I believe I was also by then told I was a ‘chronic insomniac’, I had coped with the increase in symptoms and pain through trial and error. So I was coping pretty well. However, while my mood was improved reflective to this status quo my symptoms were worse. And I would have flare ups of pain and symptoms. Sometimes it was because of a job that would significantly cause problems, or just really increase my baseline pain and fatigue. Other times it was some intense pain for no particular reason that would just really decrease my mobility. And finally I went to a doctor and laid it out for him because I was feeling really unwell. I don’t remember specifically why I had gone back home to see a doctor but I knew that I had felt really cruddy. But I was having a hard time saying specifically why… I would say I’m in a lot of pain, but that I have hypermobility syndrome. I have just can’t get enough sleep and I’m so tired all the time, but I have chronic insomnia. And I did this with a few other symptoms, such that they were all explained by other things doctors had diagnosed me with, but I said eventually, but I feel particularly worse. He naturally wanted to send me for blood work to test me for rheumatoid arthritis, but I told him it was not that, that I had been tested for that and looked at that before. And that in fact the test would come back showing high normal or possibly high than that but it had been ruled out. Because as a child I had been tested all the way up until I was 16 every six months because of that bloodwork, but the specialist had said 1% of the population naturally has a high normal ANA count so it is just something wonky about me. But something wonky that got me to see a specialist the second go around because as anticipated it did come out high so he sent me back to a specialist to rule out rheumatoid arthritis. So I am lucky he took my pain seriously and that my blood work is wonky.
That second specialist asked me a hundred questions. Took a family history, of which, I did not even know that much then. Did a physical exam… which if you are familiar with Fibromyalgia you will know as the tender point exam. Rather painful long after the exam is over I might add. He then recommended exercise, but didn’t specify the sort, not like i wasn’t rollerblading for exercise or walking to and from the University (I didn’t have a car, so walked everywhere)… so you assume exercise means Exercise. Of which is a mistake to make, because it causes a great deal of pain and at times injury to do the wrong sorts of exercise… to go beyond what you should. Which I did. I had no idea. And he also said ‘You are too young for medication’. Lovely. To be diagnosed with something of which there is to be no treatment. Sort of an empty gesture isn’t it?
But I had the new shiny Label. I must say it was sort of anti-climatic at this point. My mother and I were pretty sure I had it already, or something with similar symptoms. My father had been diagnosed with FM, so now I had a family history, so the specialist didn’t even have to work to hard for the diagnsosis. And at this point unlike at 16 when i saw the first specialist, I had begun to accumulate more symptoms on the list. Nevertheless it is a relief to finally have it defined. To know the illness you have. To know that doctors will know the illness that you have. That you can explain to others the illness that you have.
“Research shows that men who report pain are more likely to receive painkillers for their symptoms while women are given antidepressants and are more likely to have their pain dismissed as “emotional,” “psychogenic,” and “not real.” A female patient suffers constant, life-disrupting pain and is told it is in her head. She’s given an antidepressant rather than a diagnosis or a painkiller, and her anxiety grows. As her quality of life deteriorates and her pain worsens, she becomes depressed. When she reports being depressed, her initial physical symptoms of pain are attributed to her depression. The farther along she goes without recognition or validation of her pain, the more distrustful of the medical establishment she becomes.”
— In the Kingdom of the Sick: A Social History of Chronic Illness in America by Laurie Edwards
Well it turns out… I was to be forever young when it came to Fibromyalgia. If I was too young then for medication… I was too young for a very long time. The stigma this invisible disability holds is such that you are amazingly invisible to the medical community. They have a true blind eye for it. Oh, well, they have their own personal stigmas. I would not say they all think the same. Some think you are simply depressed. Others think you are just exaggerating. Some think it is just ‘all in your head’. Or they simply do not believe FM exists… had one say that in an ER situation… can’t argue with that, however, the fact he then didn’t look into the reason why I was there? Sort of poor form, given an x-ray would have determined the cause in that case. Others have no clue how to treat it. But in the end… I never got treated for it. Not ever. Not Directly. Some doctors did quite well catching comorbid conditions. Some doctors would treat symptoms that cropped up that they knew how to deal with… like when I suddenly didn’t just have sensitive skin but eczema like reactions. Or when my digestive system because irritable bowel syndrome… diagnosed that, then didn’t treat it. Things like that. Some were very good doctors for those sorts of things, some not so much. But never the core pain, insomnia, fatigue, cognitive issues. Not even when actual FM medications came out. I was eventually put on Lyrica as a migraine preventative my a neurologist… not too long ago. They were all aware I had it because I would be told things like ‘That is just the Fibromyalgia’ as in you don’t need to worry about that or I can do nothing for you there. Now some would just say that while others would take a symptom seriously, look into it, determine it was FM, then not take it seriously. And so then neither would I… if it was just FM I assumed, that meant it wasn’t doing any real harm to me, right? Must be true. That is what they clearly determined.
So what I could figure out from this was that Fibromyalgia was a condition that could really affect your life but would not kill you. Symptoms would be problematic but not a concern in any way, so you just had to figure out new ways to manage whatever they were or ignore them as best you could. Pain was something they could not be bothered with at all and so that was something I just had to cope with, but I had been, still it was important to understand I would always have limitations… so some jobs were simply out of the question and aim for a desk job by all means. Doctors were not useful for actual management or treatment of FM but they were useful for management and treatment of comorbids that made things worse health wise, for the fact in general I got sick more often, had a tendency to sprain things and of course for symptoms that cropped up that needed to be explored.
It is not as if as I said, I did not learn to cope as I went alone. I’d been doing so before I was diagnosed, so no real difference there. Try herbal treatments. Diets. Exercise. Just learn to deal with the pain. Learn moderation and your limits to what you can and cannot do. Learn standing too long is painful, sitting too long is painful and that you must shift position a lot and get up and move around, and take breaks. And I learned to study by taking breaks, eating snacks, taking notes, underlining text… any way to fight the fibrofog. And while there is frustration with the fact doctors simply do not treat that medical condition I thought they simply were of no use for that and I would just have to deal with that fact and only mention things that really aggravated me and see them for the other conditions that stacked up… like migraines which were in this time frame episodic and getting more frequent as time passed. It would have been useful to have guidance and some sort of plan of action… but doctors then, and even now, don’t have pain management skills so maybe they had no plan to offer. This would be a real issue later, but when I learned my own coping skills for pain and had already adapted, it was more symptoms that were of a concern and doctors lack of use in all things fibro that was bothersome. As I said, a true blind spot.
So what is the real issue with this medical stigma then? What is the true damage it does? Other than the fact I had a medical condition and pain that was not being treated? Other than that? You encounter all this profound stigma you learn your opinions of your symptoms and your pain really don’t actually matter all that much. You have an invisible condition that is so invisible it isn’t even treated. You can see when you are being dismissed. See when you are being ignored. Know when they refuse to take a symptom serious… only to find out months and months later it had nothing to do with the FM box they put it in (and felt free to ignore). You can tell if it is FM pain it is meaningless. But.. I learned migraine pain is real. That can be treated… so it is real. They would practically throw medications at the migraines (no, not painkillers) but many, many preventative medications and of course triptan abortives… because they had a book for all the medications to try on this pain that was at least real to them. Until… they ran out of things in their book to try because the migraines became too frequent. Off to another specialist I went. But to doctors… that pain became ‘chronic’ and therefore ‘not an issue’ for them. I regularly saw doctors because of the migraines, in the end more so for refills than anything, rather than anything to do with FM. My asthma and hypothyroidism once caught were treated pretty effectively so that was just a refill thing too. And I can say they are far more comfortable treating migraines. It is a known pain. A less stigmatized pain, when not chronic. They have a grasp on what they are supposed to do. Less stigmatized opinions about it, when not chronic. It never failed to amaze me at how Much treatment I was offered for migraines, when it was so nonexistent for Fibromyalgia. I can be eternally thankful for some of the accidental overlap such that I accidentally got some treatment for FM on the way to being treated for migraines.
So your opinions seem to not to matter with this invisible illness. What effect does that have then?
Doctors often discuss how people who have chronic pain engage in ‘sick behavior’ and engage in less activity thus eventually creating this sick persona. It infuriates me to hear such things. The lack of interest in treating chronic pain, fibromyalgia is insane. It is in fact barely there I found. Some of that is gender discrimination according to studies… doctors feel women complain more about pain so they apparently feel by not treating it we must have some sort of insane pain tolerance even though they do not seem to realize they are contradicting themselves there. Through this process of stigma, which you don’t even consciously understand as stigma when you are younger and don’t even consciously react to it, your behavior changes in response to doctors. You become more reluctant to discuss pain, because you don’t want them to think you are exaggerating or complaining… so you becoming more stoic. You never discuss how pain ever may affect you emotionally because you don’t want them to label you as depressed… they may simply then feel free to ignore your pain altogether then, it is just the depression after all, right? Mental illness stigma being as profoundly existent as others. And we as chronic pain patients become very aware of it without even being Aware of it right away. You become less inclined to mention symptoms because again don’t want to be seen as complaining or worse a hypochondriac… so you just mention when a symptom gets pretty bad or a new one crops up, seems important enough and sticks around long enough you think it worth mentioning. Conversations with doctors become these coded, weird things were more is not mentioned than mentioned. How is that even beneficial? But it is what they have taught me to behave. And when I say… hey this pain is getting out of control. Nothing is done. When I say… this symptom is peculiar… it is put in one of the existing boxes, sometimes with no investigation at all. In the end with some doctors there is just simply a failure to communicate altogether… me with my stoic careful language, them with their indifference. You have to eventually realize when you become in enough pain or the symptoms are severe enough… your language, your soft use of pain terms, your stoic demeanor, inhibits you and you must teach yourself to be more blunt and to reveal a little of the truth beneath the facade. If still there is this casual indifference on behalf of the doctor… you must seek another. Pain may be invisible but it can be deadly just the same.
And I’m not saying good doctors do not exist, I am saying the stigma on invisible disabilities in the medical field over time can affect how a person reacts to doctors because it is pervasive. It is not one bad experience and one doctor… it is a learned behavior over time that says ‘doctors do not want to hear this… be careful what you say and how you say it.’ A dangerous thing indeed.
What it actually means is that while my FM wasn’t treated, which is true, but the occasional extreme symptom was or a comorbid condition was caught. And I don’t even know what they could even do about FM to be honest back then. I do know it would have been nice for some actual effort. Or to see a specialist once in a while. I used to think it never harmed me any because I coped but the truth is it did progress and those comorbids did stack up and the idea of pain centralization makes me wonder if they had done something would those migraines have gotten out of control like they did? But it was what it was. The stigma is there and it is but one influence on how having an invisible illness affected me once a ‘label’ was put on me. It may be seen as ironic you know because with hypermobility syndrome, my very first label, that pain was seen as real and when I had problems with standing for long periods at a job a doctor took that seriously… he could do very little about the pain… but the pain was a real physical thing… as soon as the label of FM was applied to me, it eradicated the previous one and my pain became this elusive thing that could not be treated or defined or was it even real at all? It must be noted no one thought outside of the box… treatment of pain is not always ‘painkillers’ and not everyone is thinking that when they want pain management. Sometimes we are just looking for some actual direction. Especially with both of those conditions. So without direction I just tried to fumble my way along, likely like many people. And tried many, many things along the way. With FM though some of the other symptoms become a pretty big problem themselves and we have very hard time finding solutions to those ones, but still, no direction.
So you might say I have had a long history understanding just how invisible chronic pain is within the medical field and just how unequipped they are at treating it. However that stigma really did warp my opinion about my own illness. How I talked about it. How I thought about. How frustrated I was that doctors did not accept it or acknowledge it. This perception changed over time. But the early influence changed how I interacted with doctors in response to their stigma… which means it affected how I interacted with them in regards to medical treatment altogether. It affected how I thought about pain and became less inclined to express it. It made me see pain and my illness as a weakness to be overcome and something to be embarrassed about. And even though research on FM has come a long way and my frustrations about lack of treatment and stigma have made me far less inclined to see my illness as a weakness or something to be embarrassed at, rather they should be embarrassed at their lack of education and proper pain management strategies… it does not change history. It means even when the migraines became chronic, even daily, I struggled to remain in the same pattern of behavior I had learned. Have to push through the pain. Have to be stoic when in pain. Showing that you cannot endure the pain… is a weakness. You don’t want to admit you cannot handle it… they will just call you depressed… think it is all in your head. You want them to focus on the treatment, not stigma. Never ask for painkillers… they won’t give them, they will think you are exaggerating or a drug seeker. Always minimize the pain… then they will believe the level of pain is real. None of this helps when trying to get effective treatment, but I admit, nothing really would have. Migraines come with stigma as well. Painkillers have a massive stigma. And this belief that we can somehow function with chronic migraines on a daily basis when people with episodic migraines cannot is pervasive. And all these concepts born from this? These are the things you use in real life. These are the things that fail when the pain is too much. But by then people will say ‘you worked with it before, didn’t you?’ People do not understand how we cope with chronic pain, because they cannot imagine existing with it, but we do cope with it. They cannot understand how at a certain level that is no longer possible, but clearly that should be something easy to grasp, since the pain we cope with at the baseline level is something they could not comprehend in the first place. People are full of contradictions like that they they will one day realize when they have to live through it.
Well, okay, stigma in the medical field had an impact on me… or lack of treatment was certainly there and the stigmas of doctors I encountered had an impact on how I thought about my illness and pain. But I still had a life. I still finished my BA with distinction. I went on to get my Masters in Philosophy. I had a real love for Philosophy. Metaphysics in particular. I would still focus on that but perhaps these days… more phenomenology or existentialism would be more my flavor. The problem was that the FM was not treated in any way and I had to work during my Masters and for my BA I only worked during the summer for that specific reason… it causes a lot of stress to the body when you have no ‘recovery’ time… in this case working on weekends was enough to really increase that baseline pain. The migraines were at the chronic level, the symptoms getting more intense, persistent migraine auras making a real vibrant appearance. I was just trying my first preventatives at this point… and discovering how some dramatically affect thinking, not something you want as an academic. My grades were slightly affected, but again not something you want at that level… the pain was hard to think through, it was hard to get to classes. Difficult to get research done, to write and edit research papers. Partly the pain, partly the aphasia and brainfog. Either way I got my Masters, of which I am proud of, but I knew I could not go for the Phd. It would require working throughout the year. It would be far more effort. I knew medications would have an effect. The migraines were just not under control in the least. So I took a year off to get them managed and took a simple job to pay my student loans. Turns out working full-time, given the affects that has on my insomnia, dramatically increased the migraines. I never got below 20 migraines a month since then. I found a job at a bank that had at least consistent hours and no shift work. And I began a career there. And I hovered at the 20-25 migraine point initially but they got worse. Until they were daily and stayed there. Two things helped with the FM accidentally. One neuro put me on Lyrica as a migraine preventative, that did not work, but did slightly improve the FM pain. One doctor put me on a sleeping pill called zopiclone because she said I was sleep deprived, which was why I was getting so much sleep paralysis incidents and so intense morning migraines… it did help with the morning migraines and it most definitely helped get a good 5 hours sleep at night, which helped with the FM… sleep is a big deal with FM. You try to build a life and career and try to function through the pain and for a time you think it will work, if only you can make it through until a neuro comes up with the right preventative to slightly reduce the pain. You just have to survive a bit longer…
The very first blush of stigma touched me from the medical field and embedded itself deep within my psyche such that it corrupted my very concept of my illness and pain itself. The stigma? Is damaging in many ways… there were errors made because of stigma from doctors. When they do not listen. When they make assumptions. Conditions are not treated in my specific case. I could talk about those errors but doctors are human and I assume they all have these concepts about pain… and what pain is valid and what pain is not. What pain should be treated and what pain should not. But the affects of stigma affect the person on a deeper level. You understand that your illness is not important. That you are not always believed. That your pain isn’t important. That it is not believed. How can this not profoundly affect how you behave? How you think about your illness? How you think about pain? How can this not affect how you interact with everyone else in your life?