The Feeling of Validation After You've Fought for Your Health
It seems like I always have to fight for myself when it comes to my health. Before, it was when I was first started having seizures. No doctor believed me. They thought I was using drugs, making it up and everything in between – but I still kept fighting. If one doctor didn’t believe me I went to another one. If that one wouldn’t help me I’d go to another one. I knew something was wrong with my body.
It took years, but someone listened and helped me. I went from having seizures every couple of months to going two years without one. That never would have happened if I fell victim to those other doctors’ thoughts that I was making it all up. I had to remind myself of that and draw strength and at times hope from it, more recently when I had to start fighting again.
I have known for a year that something was wrong. I didn’t know if it was a broken shunt, a clogged shunt or something else, but I knew something was wrong. My symptoms weren’t normal, no treatment was helping and my neurosurgeon said everything was fine. I actually started to accept that this was maybe my normal. I felt bad enough to cry and beg and plead for him to do exploratory brain surgery to find and fix whatever it was that’s wrong. I knew it wouldn’t cure me, but at least some relief, right?
Well, my doctors did not listen to me and we had run out of options so I found a doctor at Johns Hopkins, one of the best hospitals in the country that specializes in my illness, and did extensive research and worked in experimental treatments that would take my case. It took months to get approval from the hospital and insurance company and even more months of sending records and images and setting up appointments, but we did it because you do what you have to when it’s the only choice you have.
Once it was all complete it was time to put my body through hell and take this painful seven-hour drive to meet with a doctor who might say that he doesn’t have anything to help me either, but I did it. The first two days were nothing but poking and prodding with countless tests. On the last day before the doctor appointment, my body was exhausted, mentally I was drained, emotionally I was guarded. I didn’t want to get excited or nervous and set myself up for bigger disappointment if he sent me away with nothing. We will call that “cautiously optimistic” because, let’s be honest: in the back of my mind I was still praying he would open that door with “good news” that something was indeed wrong, but we sat there and waited. The longer we sat the more anxious I became.
Finally he came in and told us that one of my shunts was obstructed and one was draining way too much, and although he didn’t know why, he had a way to figure it out. Figuring it out meant at least two more brain surgeries, possibly more, and oh yeah – I would have to drive seven hours back to have these surgeries away from home, away from my family.
He said all the concerns I had over the past year were valid. There was something wrong and had been wrong for a while – what he found explained my abnormal symptoms. Sigh. I could breathe again. For the first time in days I smiled. I was so happy I could’ve cried. It didn’t matter that hearing I was right meant I had to have surgery eight and nine and possibly 10, or that I’d have to make a painful trip again away from my family and home. It meant I could get help, it meant someone listened, it meant the possibility of some relief, it meant validation.
Now if I had stayed at home, at the same hospital with the same doctor, I could’ve gone even more years without help. I would be in so much pain for longer than needed all because I didn’t keep fighting. I listened to my body and I kept trying. No matter how many specialists said nothing was wrong with me. Who knows what answers you can find if you don’t even seek to find them. One doctor may not have all the answers, but he may know someone who does. Or they may have a piece to the puzzle you need. And trust me – I know that fighting can be emotionally depleting and financially hard, but I promise it is worth it.
If you know you are not the type of person who can speak up for yourself or find the answers you need, that is OK too, but ask for help. There are patient advocates out there who will fight for you and stand with you. The validation you’ll feel from fighting for yourself and your health is a feeling that nothing can replace.
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