Self Advocacy & Trust

If nothing else, trust your body and speak up for yourself, because no one else will!

I have been thinking about this particular post since September and now, the message is more important than ever. As an individual with disabilities that require special medical care, I have a great deal of respect for medical professionals. They have the knowledge, experience and skills that I never will and I acknowledge that I need these individuals on my side. That being said, I learned in September of this past year that while they are the medical experts, I am the expert on myself and as a result of that I have to be my biggest advocate. Three weeks into September, I was laying in bed when I suddenly experienced a sharp pain in my stomach. I remember it coming on so suddenly, but after a few moments the worst of it passed, or so I thought. The next morning I woke up in discomfort, but thought that perhaps I had eaten something that didn’t sit well with my system. I went about my day, this pain becoming a constant– there when I wake, made worse by certain movements and always in the back of my mind. I admit, at first I didn’t think much of it. That was until it persisted for weeks, which turned into months. Three weeks after the pain first appeared,  friends of mine drove me to the nearby hospital. There, they took some images of my abdomen, drew blood and concluded that there was a minor amount of fluid within my stomach: a ruptured cyst, the beginning of my period or a minor stomach virus. These were the suggestions that were being thrown out to me, none of which were definite diagnoses. Needless to say I left the hospital feeling dismissed, embarrassed and frustrated.

I knew my body and this just wasn’t normal for me and I wasn’t ready to throw my hands up in defeat, regardless of what the first set of doctors said. As the weeks went on, my symptoms worsened. The pain increased as the days went on. It was becoming harder and harder to keep food down and my stomach was becoming more distended. As the first school break neared, I decided it was time to go home and speak with my primary care provider. Unfortunately, she also couldn’t definitively say what was going on with me either, so she referred me to a general surgeon. Weeks later, tired and frustrated I met with the surgeon, the third professional that I had seen because I wouldn’t accept that what I was feeling was normal. At this point, I had heard it all:
“It could be anxiety.”
“Perhaps it was ‘woman related’ problems”
“This will pass”

These were the very thoughts that were replaying in my mind as I sat in the surgeon’s waiting room. Was I being silly? Why wouldn’t I just accept that everything was okay? The way that I was so quickly dismissed in September put a tremendous amount of doubt in my mind and I found myself questioning what I knew wasn’t right. Minutes later the surgeon came in and introduced herself to me. She had kind eyes and she seemed willing to listen to me. I just needed her to believe me when I said something wasn’t right.

“Well, I can see why you’re uncomfortable. In looking over the images that they took of your abdomen in September, I can tell you that you have an Umbilical Hernia.” I remember for a few moments, I said nothing. I couldn’t say anything, because how exactly could I say thank-you for believing me, without crying? I asked her then if she was certain. Why could she look at the very same images the hospital took and see what they could not?
“Sometimes, professionals look so much at the bigger picture that they can overlook something that didn’t know to look specifically for.”

I am writing this post in the safety of my home, gingerly sitting on the couch as I had surgery only two days ago to repair the Hernia that was missed by the first two sets of physicians I saw. I am hoping that people understand that they are the experts on themselves. You know yourself better than anyone and I want you to believe what your body is trying to tell you. Trust yourself and speak up, be your strongest advocate. It has been a long few months and there were many times that I questioned and doubted myself, but I’ve learned over the years that I could not afford to be passive when it came to my needs, my body and my intuition and neither can you. Learn to speak up, trust your body and listen to the signs that your body is using to show you that something may be wrong.

As an individual with disabilities, I had to surround myself with an amazing medical team, but these doctors work with me, not for me. While they are the experts on medicine, I have an understanding of my body that they do not and because of that, I will never stop speaking up for myself. Neither should you!

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