Healthcare Needs An Overhaul

    I’m in several support groups, on Facebook, for my chronic health issues. One is for dysautonomia, and I saw a question posted this morning that really upset me. I’m not upset with the person who asked the question, I’m upset with healthcare in general. The questions was, “What has changed for you after being officially diagnosed?” My answer was, absolutely nothing. I didn’t even get a specific diagnosis, I was told it was “just general dysautonomia” and that I “could try flydrocortizone”. If I didn’t know how to research and ask questions, then I would have no idea how to even take care of myself right now. It was the same way with my celiac diagnosis. Three weeks after the test was done I messaged my doctor and was told “oh yeah it seems you do have celiac disease. Go gluten free.”, and that was it. If you have had to go gluten free, then you know how hard that is. Gluten is hidden in everything. Again, if I didn’t know how to research and ask questions then I would be in so much trouble. It’s so very sad that healthcare professionals can’t do better than this. It’s pretty much, here is your diagnosis now figure the rest out for yourself. When I was diagnosed with the autoimmune disease that was causing my breathing issues, it was by my ENT, not a rheumatologist who is supposed to diagnose autoimmune diseases. My ENT went out of his way to research and diagnose me so that I could know what was going on. If a previous pulmonologist was doing his job, and would have done lung function tests instead of just diagnosing asthma, without any testing, then he would have caught on to the fact that I didn’t have asthma, I had something else. This could have been found years earlier and may have even prevented me having to have a trach for over a year and a half. Our healthcare system really needs to do better. I could go on and on about this, but I’m going to leave it here for now. Please, research for yourself when it comes to your health, and be your own advocate. Don’t ever give up, don’t let medical professionals gaslight you, and keep fighting for you.