Category Archives: Social Security Disability
The life of someone with a chronic illness is not easy. Not only do we have to live with the cards we are dealt, but we are constantly bombarded with new ones. Every time a new symptom pops up in our lives, we have to question it: Is it caused by the tremendous stress we are under? Is it a new symptom to a current illness? Is our illness getting worse? Is it, Heaven forbid, a NEW illness?
The sad truth is that those of us with a chronic illness -like fibromyalgia or the plethora of autoimmune diseases out there- are susceptible to developing other illnesses. We can lose track of all the diagnostic labels thrown at us by well-meaning doctors. It is a dirty secret in the fibromyalgia community that none of us have just fibromyalgia. If I counted all my illnesses using my fingers, I would easily need both hands. Now image trying to take medications for all of those! I am lucky enough to have found medications that treat multiple symptoms and illnesses.
Recently, I succumbed to family pressure to jump down the rabbit hole of medical tests yet again. After enduring so many tests in the past with little to no helpful results in the end, I was not eager to go through them again. However, my symptoms were not getting any better and those who care for me were very worried. For three years I was losing weight at a steady rate without intentionally changing anything I was eating or doing. I would have flare ups of symptoms for discreet amounts of time – e.g., nausea, vomiting, abdominal pain, bloating, inability/desire to eat, feeling full quickly.
I started going to a GI doctor at a prestigious hospital hoping she could figure out the problem. If anyone ever complains that socialized healthcare in Canada or the UK is slow, they obviously have never tried to be diagnosed in the US. Unless you are in critical condition (i.e., dying), the process can be painfully slow. It can take up to three months to get an initial appointment with a specialist. Then, another month to get in for a test and another month to see the doctor again. If your tests come back normal -like mine do- this goes on and on. After almost eight months, I still have no official diagnosis but have dished out the overwhelming sum of almost $1000. How does one pay that bill on disability?
I was so distraught over the last test coming back normal that I called my doctor. I was upset and discouraged. I honestly did not see the point in going through more tests. I was finally on an anti-nausea medicine that helped enough to stabilize my weight. I was to the point where I was just going to suck it up and suffer through my debilitating flare ups. I was already on disability. My prospects of ever working full-time again were slim to none. So what if I was in more pain and more disabled than before? What difference does it make? It isn’t like they give you more money the more disabled you are. There is no prize for being the “disabled-est.”
I would like to congratulate my doctor for not giving up on me. She is also the type of doctor who doesn’t blindly follow tests. She knows they are not always correct. She knows that they can be normal at times even when you are really sick. She knows that if I am not in a flare up those omnipotent tests are not always omnipotent.
She came up with a working diagnosis – gastroparesis. It basically means that during flare ups, my stomach forgets to digest food so it just sits there for hours and hours and hours. I can vomit my dinner six hours later. That, my readers, is not normal! Instead of waiting for a test to comeback positive, she prescribed medication for it.Unfortunately, the medication does not always work and has a list of permanent side effects. Those are side effects that do not go away even if I stop taking the medication. I am not sure I want that added to my already complicated life. So what does that leave me? You guessed it! I need to suck it up and live with it…
This past Monday I turned 40 years old. Four decades. Two scores. I am not the type of person who freaks out over getting older. We are all getting older every second of every day. It is no big deal. However, this birthday is slightly different. You see, my fall through the rabbit hole of chronic illnesses and disability all began right around my 30th birthday. I literally see my thirties superimposed by my poor health. It started with a migraine that lasted two weeks and quickly spiraled out of control with shingles, fibromyalgia, raynaud’s disease, osteoarthritis, degenerative disc disease, chronic fatigue, acid reflux… And I am sure the Fates are not done dumping on me yet.
However, I view my forties with hope. A hope that things will get better for me and my health. I am hoping that the mere changing of my decade from a 3 to a 4 will magically change everything. I guess it is no secret what I wished for when I blew out my birthday cake candles. What would you wish for if your life was ruled by chronic pain?
I can honestly say that I did not picture myself in my current predicament ten years ago. Back then, I thought I could simply make an appointment with my doctor and everything would be fixed. Then I could move on with my plans for my career and having another child. Needless to say, neither of those things happened. I lost my career and the chance to give my son a sibling. He seems okay with it, but I still have moments when an overwhelming sense of loss over what could have been washes over me. I know my body cannot physically care for the needs of a newborn. I have babysat friends’ kids and been completely overwhelmed. I accept that reality but the heart doesn’t care. It still longs for what could have been.
I was approved for Social Security Disability when I was a mere 32 years old. At the time, I saw it as a temporary condition that I would change in five years, ten tops. After eight years, I am still struggling to find a livelihood that can support me with my physical limitations. No luck yet. Part of the problem is that I doubt myself too much. I have been out of the workforce for so long and my brain fog has gotten worse so that I don’t trust myself to be able to think properly when it counts. I lack the confidence to put myself out there.
I don’t stress aging, at least not my body aging. I fear the progression of my illnesses and their proclivity to multiply. I started with the chronic migraines, which I thought was a living Hell. Now I know better. I would willingly sacrifice part of my lifespan if I could live out the rest of my life in relative health, able to do all the things I love to do.