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For Those Who Don't Know If You Should Even Consider Yourselves 'Chronically Ill'

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Reading all these inspirational stories about chronic illness and chronic pain can be a huge help, especially for those of us who are just starting out. It can be overwhelming, though, when you don’t know if you should even consider yourself “chronically ill.” You aren’t sure if you should apply these things to you. You aren’t sure where to count yourself. All you know is your life is turning upside down and you can’t keep up with the way things are anymore. You feel inadequate, and sometimes the doctors who are supposed to be helping us just make things worse. Until recently, this is where I was. After four years, of not knowing, I finally have an answer and a doctor who will work with me.

When I first started having pain it wasn’t daily, and it wasn’t constant. It was occasional and tolerable. I ignored it as most people do, thinking it wasn’t a major issue. Slowly but surely, the pain became more prevalent, more consistent. Of course, I didn’t want to admit it was a problem — that it interfered with my life; with raising my child, taking care of my house, working my job. After one year of the occasional moderate pain building to constant severe pain, and one year of the pain being constant and not going away… Well, I finally had to admit to myself it was time to see a doctor. I did not, however, expect anything that would come next.

Like most people, I walked into that first doctor’s appointment believing wholeheartedly that my doctor would listen to what I was saying, recognize that I had a medical problem, and fix it! I never believed any doctor would completely ignore or dismiss what that patient was saying! I know now that my situation is far more common than it should be…

My doctor insisted all my pain was caused by my breast size, to the point that he would not run a single test until I not only agreed to breast reduction, but had completed the procedure waited for my body to “adjust” for several months after. This took a full year of finding a plastic surgeon who agreed with him and didn’t think I was trying to scam my insurance. The whole time I kept asking my doctor if we could at least try something else. An X-ray, an MRI, medication, anything! The only thing he allowed this entire year was physical therapy.

After my needless surgery was over (it did not help) and enough time passed, my doctor finally gave me the label of “acute pain” (believe me, there’s nothing cute about it), I got my first as-needed pain medication, and ordered my long awaited MRI. In my mind this was it! I was finally going to get my diagnosis, and there was going to be some ridiculously easy fix to finally make me all better!

Fat chance! My MRI showed a big fat nothing. I was in shock. I waited all this time and I had no answer. And the worst part was my doctor started to question if I was lying about my pain. He asked me over and over, at appointment after appointment. I finally broke down in tears and started going off on him with “How dare you.” My mistake was crying, because to him this meant it was “simple muscle pain caused by depression.” Things like this went on for a while. The only difference after the surgery and the MRI was my doctor started throwing medications at me like spaghetti at a wall trying to make something stick. In this year I went from one medication to six for my pain alone, all while getting suggestions such as “Make sure you’re getting enough sleep” and “Why not just get a massage and relax for a change.” Oh, and do you want to know how many of these miraculous medications help me more than your average heating pad? One.

That brings us to now. More than four years after the first signs of pain I experienced, still not officially chronic or not, but I have finally switched doctors. After one week, one X-ray, and two appointments with my new doctor, she was able to give me what my past doctors could not. A diagnosis that could possible explain all of my pain! It turn out that my hips became uneven (probably when I gave birth) causing a short leg, which caused scoliosis. It’s going to take six months to work my way up to the full size heel lift I need, and then we’ll have an idea of how much of the damage and/or pain is permanent.

For those of you out there who are still looking for your answer, hold on. You’re not alone. Find a doctor who will listen to you, talk to you and explain things to you. Do not feel like you have to put up with statements such as “You don’t need stronger medication, just suck it up.” No one has the right to push us down! No one has the right to treat us as second class citizens! Especially not the doctors who are supposed to be helping us. One day we will find an answer, whether we find that ridiculously simple fix, or join the ranks of the chronic illness warriors.

Originally published: August 18, 2016
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