Let’s Talk Doctors and Advocating for Yourself
How many times have you gone to the doctor with a complaint, only to be told there is nothing wrong? I’m sure that it has happened to us all at some point, and most times, we will take that “diagnosis” of nothing and go on our way. But what do you do when that nothing turns into something?
Unexplained symptoms with no relief
For years I noticed changes in my health that I couldn’t understand: Chronic fatigue after minimal activity. Body aches and pain that made me want to stay in the bed for days. Random bouts of nausea and vomiting. I’d have chest pains and couldn’t explain where they came from. When I would go to the doctor, they would do tests, and most of the time they could never find anything wrong. If there was something they did find, it was usually minor and something was prescribed that was supposed to help, but it usually didn’t.
Anxiety, anxiety, anxiety
There were quite a few times that I went for chest pains and was told that it was just anxiety. The only anxiety I had at that time was the anxiety of going to get treated and not finding anything wrong. I began to second guess myself. The symptoms continued for years.
Something didn't seem right
For over a decade I have had mystery symptoms, and no one could figure them out. I have seen general practitioners, rheumatologists, orthopedists, and no one has had any answers. The only consistent result that's been found is a high inflammation rate. After I was diagnosed with diabetes, I was told that my mystery symptoms were because of that. I did my research, and it still didn’t seem right, but I’m not a medical professional, so I didn’t fight it.
Finally, a diagnosis
I finally found a doctor I could trust and told her about my symptoms. Like the doctors before her, she listened to the symptoms, and ran a test. Although most of the tests were normal, once again my inflammation rate was high. It was then that I got my fibromyalgia diagnosis. I had a little vindication because, although that is a diagnosis that is given when nothing else can be found, I felt heard by my doctor.
I lost my vision
Time went on and again my symptoms worsened: the fatigue, the body aches and pains, the nausea and the vomiting. I now have vertigo, which is somewhat new. But my trusted doctor is now gone and I have to find someone else who will listen to me, but it’s hard, because again, nothing can be found. The dreaded day came on June 14, 2020, when I lost my vision and, finally, ended up being diagnosed with NMO.
Self-advocacy is key
Throughout this journey I have been disregarded by so many doctors. I have been made to feel as if I am a hypochondriac or an attention seeker. I took the word of the medical professionals as gospel, but I have found my voice. Advocating for yourself is must.
No one knows you better than you
You should never let people make you feel as if what you are going through is irrelevant. You should never be afraid to speak up for yourself. I often let it go when doctors told me there was nothing wrong, even though my body was saying differently, and I feel like it cost me some quality of life. I am no longer allowing that to be the narrative. No one knows you better than YOU. If something doesn’t feel right, chances are that it might not be. I can’t speculate and say that my NMO could have been caught sooner because the reality is that I don’t know. This disease is not well known and does not have a predictable course of action. Speak up and speak out!
Don’t be afraid, and don’t back down.
How much do you share about life with NMO with family and friends?