The Mighty Logo

The Autoimmune Disease Guessing Game

The most helpful emails in health
Browse our free newsletters

It is bad enough to be diagnosed with an autoimmune disorder. The symptoms and fatigue can be overwhelming and a person’s life is thrown into a tornado of pain, denial, and disease. Imagine always having no idea what’s around the corner. What many people don’t understand is that what comes after the initial diagnosis of an incurable disease is a trial by error guessing game.

In the beginning, when the first persistent symptoms start to turn into something uglier, a person can only guess what may be going wrong inside their bodies. Most people don’t automatically assume that they have an illness that will never go away. We expect to be able to go to a doctor, receive a diagnosis and then the proper medication to make a recovery. Before being diagnosed with Crohn’s disease, I went through several different doctors trying to figure out what was wrong. The first two trips to an urgent care brought no answers. Their referral to a general practitioners office gave me a false diagnosis of an ulcer and a prescription for a ridiculously expensive drug that turned out to be of no use. I guess I spent $286 for nothing.

After finally getting a proper diagnosis from a weeks stay in the hospital, I started to guess what was next. Will this $1,200 a month prescription work? Will these steroids affect my mind? When will I finally start to feel better? The questions I was guessing the answers to were getting more and more complex the deeper I got into my diagnosis. Will anything at all make me better? What if I doubled the medication? Have my children inherited the disease from me? Every time one of them complains of a tummy ache or diarrhea, a caution light goes off in my head and I take a pause. Guessing if their symptoms are benign or something more sinister has become a game that I try not to play too often.

After your illness becomes stabilized or dormant, it is a constant guessing game as to when it will wake up again from it’s slumber. When a person has one autoimmune disorder, they are likely to get another one following close behind. A lame immune system breeds all types of fun issues with the skin, joints, and even one’s mental stability. You are in a constant battle with yourself. Once the second or third disease comes into play, then it is a guessing game of figuring out which symptoms belong to which disease, and which type of specialist to see about it. Is this rash a type of psoriasis or an abnormal drug reaction? Is the intense pain in my back referred from my intestines or is it just a kidney stone? If I end up in the emergency room, will they be able to narrow it down and help me find relief, or will I be treated as a drug seeker? I guess it’s worth a try.

The guessing continues when it comes to the insurance monsters. Will they accept the treatment plan my doctor has laid out for me? Are they going to cover these unaffordable prescriptions or stop me from getting my $11,000 infusions every eight weeks? If the Affordable Care Act is dismantled, will I be just another pre-existing condition? The guessing and worrying are as constant and never ending as the disease itself. I even have to guess into the future. Will I be well enough to take a scheduled trip to the beach? Can I make it to a concert six months from now if I bought the tickets today? Is there ever going to be a cure for autoimmune disease? I guess I’ll have to wait to find out.

Getty Image by Kanturu

Originally published: May 25, 2018
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home