at least not today. Talking about disability is often very overwhelming for me, emotionally, and believe it or not, often physically too. I am still unsure of how my voice fits into all of the other voices. I still have trouble making the mental leap between having a chronic illness that no one can see and admitting to myself that I have a disability that no one can see.
I do my best to talk about it w/ like minded people, people close to me, people who know me. My best is not good enough. I can’t look at my husband and say “I’m disabled”. I can’t explain to The Kid that I can’t get up and rough house w/ her (she knows this and that it hurts Mommy) b/c I am disabled. Even though the pain of my illness has changed my life permanently I can’t seem to wrap my head around using the word disable in reference to myself. When I write I try to. But there is a huge difference, to me, between writing “I’m disabled” and actually saying it out loud.
I wasn’t going to do this today, b/c even the plethora of doctors I have seen over the years have left me convinced, whether intentionally or not I don’t know, that I am over emphasizing my pain. That my symptoms could be too many things to be one thing. They have, over the course of my “care” and Medical Discharge from the Navy given me a diagnosis and then taken it away in order to avoid paying me more money for a disability. The mental leap starts w/ the language I hear from those I have trusted to help me. When their agenda left me w/o answers it also left me w/o a way to identify what is happening to me. They routinely dismiss my symptoms. ”You are depressed, and that is causing pain” (no, actually I am depressed b/c I am in pain, and you don’t believe me). They tagged me w/ a mental illness and shuffled me off to a psychologist to be treated w/ Anti-Depressants. While I hear some people have had luck w/ this course of treatment, I have not. It frustrates me more, first b/c it feels like they are telling me it’s all in my head, and b/c the shuffle to Mental Health closes doors to other doctors, who “don’t treat Mental Health patients”.
I wasn’t going to do this, b/c I feel dismissed and not taken seriously. The medications they put me on cause side effects. Side effects that further alter my already askew life. I routinely succumb to fatigue while not being able to sleep. I taste metal, to the point where I can’t eat. Even though nothing fully removes the headaches sometimes it is merely disguised by the dizziness. My sex life w/ my partner becomes strained b/c the side effects of the medication make it impossible for me to climax. When I mention this one to a doctor they merely nod, give me an “mmm-hmm”, and move on. Part of the “quality of life” they try to enhance for me obviously doesn’t include a sex life w/ my husband. I guess people like me should have resigned to giving up sex if we are in so much pain, instead of trying to find ways to enjoy it. My quality of life doesn’t seem to include that need fueled by a desire for closeness w/ someone who is also affected daily by what is happening to me. My fatigue and drowsiness is dismissed, b/c sleep is supposed to be what my body wants, but if I tell them I sleep too much then I am not exercising enough, and that is why I am tired. It is never the medications, you see. I couldn’t possibly know more than doctors do about my body and my condition.
I wasn’t going to do this b/c I don’t know where I stand. I was told I have Fibromyalgia. That provided me a small comfort. I could put a name on it. I was told I have Fibromyalgia, and that they still weren’t sure if I have Lupus or not, b/c my blood work is always too close to call. I have tried to embrace that, to help me reach out to other people suffering like I do, other people who have their diagnosis, not having it revoked for accountability’s sake, to feel like I am not some strange other, someone who doesn’t belong. It’s a funny thing how words mean things. Having that label gave me back some of the identity that the illness has erased from me. I also have trichotillimania, and having that label allowed me to finally realize I am not just some freak, someone who is fucked up so much that she has to pull out her hair and pick or scratch at her skin until it bleeds b/c she is in physical or mental pain. It helped. It gave me something to touch, in a manner of speaking.
I wasn’t going to do this, b/c even using that title doesn’t help. People still dismiss Fibromyalgia as not a real illness. Even many of my meat world friends have distanced themselves, I suppose b/c I am too tired or in too much pain to attend their parties or I have to cancel plans for lunch or coffee at the last minute b/c simply getting out of bed used up all of my spoons (PDF). They don’t have to say that they don’t think I have a real disease or real disability. I can see it on their faces when I say “my fibro has kind of left me wiped today”. They can’t imagine that constant pain is physically exhausting. They try to relate or be helpful, telling me that X works for their migraines, or that I am probably just iron deficient, and I should take supplements. There is no way that I could possibly know more about my body and my illness (diagnosed or not) than they do. I don’t simply have migraines, I have headaches that are too odd to be migraines and are always present and unbelievable pain brought on by things as simple as a sheet touching my legs in bed or the mattress being too firm against my joints. I still get the “it can’t be that bad, just cheer up”, or “you don’t need that medication, it’s just Big Pharma”. Before I was discharged I even had a friend ask me to lunch to tell me that it wasn’t fair that I was going to try to keep my job if I couldn’t perform all the physical aspects b/c I was getting high Evals from my supervisors. It wasn’t fair to the other who weren’t getting those Evals, she said, b/c they didn’t think I deserved them. Some friend. Wanting me to give up my job before I had to b/c it made others feel bad. All because my body had given out on me. I couldn’t run and to pushups anymore, and somehow it was so much my fault that I should be forced out of a job that I still very much needed. This friend wanted me to stop fighting for my right to finish out my enlistment fully, even though the Military has something called Permanent Limited Duty to allow people to finish out their enlistments (or commissions) even when they are disabled or too sick to perform all Military duties. I was selfish to want to fight for it, and in the end, I succumbed and gave up fighting. I was to weak to fight people who seemed to be against me, let alone people who said they were my friends. I still am too weak to fight w/ my friends.
But I need to do this.
I need to use the energy that I have to help people realize that people like me exist. I have to do this b/c people need to see that even illnesses and disabilities you can see or understand are real, and the people who suffer from them are equally real.
I need to do this in case someone else out there is like me, in Medical Limbo, awaiting the blood work or facing the skepticism.
I need to do this in case another spouse or family member out there sees that I am sympathetic to how my life changes have affected my family and know that they are not alone.
I need to do this b/c The Guy has been better at embracing this than I have, and has been endlessly helpful, understanding, and supportive, and that deserves to be acknowledged. He has accepted it and adjusted his life to my needs, and even though we divide housework evenly and acknowledge that it is real work, he often tries to do more to help me out, and that deserves respect.
I need to do this so that people who share my struggles can see that there are other people like them. I have to b/c it make me feel less useless.
I have worked my whole life, since I was 14 and helping on a friend’s family farm. I was thrown out of my home at 15 b/c my mother’s boyfriend didn’t like me, and lived on other people’s spare beds and couches until I graduated, working, running Track and practicing in Band. I paid for my own college w/ my hard work ethic (b/c no, I didn’t go for free), even when it left me little time for study, practice and social life. I waited tables and tended bar until I gave birth, and I have been both a victim of physical and emotional abuse since I was young, and even once sexually assaulted by a older cousin. I was a single mother for years, and have come out on top of a nasty divorce from a terrible person. I have always endured. I have stubbornly survived until this illness ravaged my body, and I don’t know how to not fight it. I don’t know how to accept that things happen to me that I can’t fight off, that I can’t work hard and escape. I don’t know how to wrap my head around not being able to do something simply b/c my body has decided it won’t fight anymore.
And that is why I wasn’t going to do this.
Read more posts on Blogging Against Disablism Day at Diary of a Goldfish.