In honor of upcoming Invisible illness week I thought I would write about some of my thoughts about my history with having an invisible illness through my life. Not the infinite details of it but some thoughts on it.
“On the psychological level recognition means support. As soon as we are ill we fear that our illness is unique. We argue with ourselves and rationalize, but a ghost of the fear remains. And it remains for a very good reason. The illness, as an undefined force, is a potential threat to our very being and we are bound to be highly conscious of the uniqueness of that being. The illness, in other words, shares in our own uniqueness. By fearing its threat, we embrace it and make it specially our own. That is why patients are inordinately relieved when doctors give their complaint a name. The name may mean very little to them; they may understand nothing of what it signifies; but because it has a name it has an independent existence from them. They can now struggle of complain against it. To have a complaint recognized, that is to say defined, limited and depersonalized is to be made stronger. John Berger”
So in the beginning of my chronic illness journey I had no label. My mother could tell you a great deal more about the specifics of what my health problems were. The nuances that came up and when the first appeared. What tests they first ran and why. I remember diabetes was ruled out because of that horrible juice so saturated with sugar it made me want to gag. But when it came down it it I have frequent visits to the doctor… either every three months or six months to check my high normal and sometime higher ANA count. They were trying to rule things out at that time. I know my mother began to suspect Fibromyagia and so did I was I got older, but I don’t think the doctors really looked at that at that time. I had a school complain about my absences due to these and the fact I was skipping school… my mom was outraged since my grades were quite why and so what did it matter? Fact was I skipped school to take naps… what a little rebel. When I got to high school I learned to skip a class to go home for a nap.
But really what this is about is living with a chronic illness without a label. You cannot tell people you have this or that. So you say nothing. You have no reason for why you are tired all the time. Why you are sick all the time. You don’t tell them you are in pain. You have no label to defend you. Sometimes people will call you lazy. Or antisocial. And you cannot defend yourself. I rather fit into the anti-social role anyone since I was a reserved introvert so I took that one on. You are forever existing with this illness and no one is aware of it.
My memory is more clear in my teens than younger. I remember the fatigue. I was always so tired all the time. My insomnia had been around since I was younger…. my brother and I used to share a room together and we would be taking and next think I knew mid-conversation he would fall sleep. I was amazed he could fall asleep do fast. I never could. I had pain most often in my joints, like my ankles and knees. My first job at 12 taught me I could feel so much pain everywhere and even more so in the joints such that when I finished work it was a profound relief. I knew then I could never work a job on my feet. I would have to work a desk job. I kept at it for spending money but that pain never went down. I understood it wasn’t normal. But it was my normal and it is not like I was different than any other kid really. I don’t think it affected me overly. I still engaged in activities, like I liked to Rollerblade at night even though it caused pain in the knees and I really had no balance and that did lead to some injuries. But I could never sleep, so sometimes I wanted to tire myself out. And it is not like as a child I was not engaged in swimming lessons, skating lessons and gymnastics as my mom would put us in something every year and I think this was good… for the joints and for exercise. There was just this constant overlap of illness that should not be there, pain that lingered, fatigue that was constant and insomnia that never went away… along with other symptoms and bloodwork that couldn’t be explained. Because in those early years it was noticeable and some situations very much so to me when I did certain things that overtaxed me, oh and then wicked PMS I would not wish on anyone, but overall I know it was quite mild then. Just the hints of what was to come. Like I had sensitivities to chemicals, smells and light. Things like that. Unexplained rashes, bruises, easy to scar, scars that didn’t heal well…
Now when you are chronically ill and you are don’t have a diagnosis… it is a quest for a diagnosis. You are sure once you have on and begin treatment things will improve. I knew after all by the age of 16 with my very first diagnosis some of my pain was from hypermobility syndrome. It just didn’t explain all the symptoms. At that time though I had a very good doctor that I have faith in to find the answer. I believed that when he did I would trust he treatment. I didn’t know all doctors are not like him. If they were that specialist would have helped with the hypermobility syndrome more or told me he thought I was developing FM. It is all about the quest. Your mother is determined to find out what it is so she can help her daughter. And in the end too… I wanted to know what this was so something could be done about it. That is what doctors do right? Fix things?
I also began to have this sense that my body is betraying me but it would get my mind. I became determined to find a job I was passionate about and to do that. No matter that I had to deal with physically, I could cope with, as long as I had a job that engaged me I would be content. I just wanted to be content in life. I loved writing stories and if I could become a writer and make a living at it then that would be one job I would be passionate about. But I also wanted to go to University and see if there was something there I could be passionate about as well. I understood I was physically limited and that would limit me in some ways… but I would get around that and find a way to achieve a life that would work with those limitations. It made sense to me at the time.
And I have faith in doctors because the one I had was so good and I had never been exposed to others to compare him to. Because you see, even as I felt the way I did, had no concept of it getting worse. Staying the same sure, but not worse. I only saw the potentially of it getting better.
Yet from the ages of 16 to my diagnosis of FM at 21 my symptoms did get worse quite a bit. I had a hard time adjusting to University my Freshman year because I came out of my reserved shell and want to play with all the other boys and girls… but by then the pain and fatigue, combined by some serious insomnia were quite a bit worse. I was constantly overexerting myself. I learned a very hard lesson in moderation and limitations. It made me depressed for a year because of the fact I realized I was that limited by my body. That I could not keep up. My first encounter with doctor stigma was a doctor who assumed my pain and fatigue was depression because I was a young woman, and ignored the fact those symptoms where already there. But my depression that year had been strong and profound, even if it was caused by my failure to cope with my illness so I let him put me on an antidepressant called Paxil. It made me sleep for hours, like 12 or 14 or 16, and I would not want to get up to eat or go to classes. Those things seemed meaningless. I was an emotionless zombie. Everything seemed meaningless. Except sleep. Two things cleared the haze. I went to final exams and could not open the door to the building, instead of going around… I went to bed. Flunked. Second… I pulled on a pair of my ‘thin’ jeans and they were not ‘baggy jeans. I was now quite underweight. I said screw it and stopped taking the pills. But… that semester was ruined. I failed classes, thankfully Freshman classes do not reflect end GPA. I did take a year off to get out of my depression on my own. And when I returned aced every class. But because of that doctor I’m hesitate to treat depression related to illness with medication as a result. I don’t believe they understand it well enough.
However when I learned to cope I was far happier and succeeded well, but it meant I had to decrease the amount of friends I had to just those who understood I had those limitations. I had to completely adapt how I did school work also because I discovered brainfog and cognitive dysfunction… but I learned to work around it in different way. I didn’t like it because those symptoms affected my ability to Think and that was Important to me. I had a very mind vs body approach to my illness at that point. And illness with no name still but one I was figuring out new ways to cope with nonetheless. My sense of accomplishment in getting passed the depression and coping with my illness to thrive at University was great though. And those were very happy times for me. Very painful summer jobs… customer service, a maid, a baker… all reminding me I needed a job I could do that I was passionate about to succeed in this world and that would make me content. I did not even believe I will be limited so much as to not succeed in this. I still believed I could achieve my goals, had I not just done that? Had I not coped with the pain and symptoms and began to achieve honor grades? Did that not show I could work through any obstacle in my health and achieve my goal? Still have ambition?
I only every revealed the nature of my symptoms to those close to me. Otherwise no one would have known I had any illness defined or not. I was just ‘clumsy’ or ‘absentminded’ or a ‘chronic insomniac’ or ‘really double-jointed’. It is like a secret. A secret you can hide because no one can see it.
|Me from my University days with my boyfriend, when we first met|