I went to a doctor’s visit last week that left me upset. You see, I have been trying to get help for my chronic pelvic pain since 2012. I saw a practitioner last month, but she did not feel comfortable treating me with so many different autoimmune issues, so she passed me off to another doctor of the same practice. When I finally got to see the new doctor, she recommended physical therapy for my pelvic floor muscles. PHYSICAL THERAPY for possible adhesions from multiple c-sections and abdominal surgeries! The previous doctor was recommending a hysterectomy, so you can see why I might be baffled at physical therapy for this issue. I was so upset at the prospect of being passed onto yet another specialist, that I was in tears. I did eventually find the composure to advocate for myself to this doctor. I explained that she is now the 6th doctor to pass me off in two months, and that I believe this might require surgical intervention, as the previous doctor recommended. We came to a compromise… two months of physical therapy, and if it’s not better by then we will go to a hysterectomy.
This particular doctor’s visit made me keenly more aware of the battle that we have to wage on a daily basis when we have autoimmune diseases or chronic illness. This is the first time on this journey that I actually had to advocate for myself. I felt like I was fighting with my doctor, and that did not sit right with me. I don’t feel like I should have to fight for my quality of life to matter to my doctors. It makes me wonder how many other people are having to fight their doctors…and why do we have to fight?
I have had six specialists that I have been referred to in the last few months that have refused to take my case once they see my chart. A lot of my levels are very high, and I have not one, but two rare autoimmune diseases. I feel like the specialists look at me as a liability, so instead they send me away to die… literally. That is exactly what will happen to me if I can not find specialists willing to take my case. My autoimmune liver disease can and will end my life if not treated. I have too much life left to live for these damn doctors to send me away already!
At times like this, I realize how very scary this autoimmune life can really be, and there are millions of us fighting for our lives. We are fighting against our doctors who are supposed to be on our side. Sometimes we even have to fight against our families or our friends. There are a few members of my family who change the subject every time it arises. The hardest fight that we fight on this journey is ourselves. Or at least that is the case with me… I fight myself to keep going when I just want to give up. I fight myself to eat when I have no appetite. I fight myself to take the medications that I loathe. I fight myself to hold it together for my kids. I fight myself to keep fighting. I fight…