I was thinking about my deep depression the day before my rheumatologist appointment. Having rare chronic illnesses is nothing like having the flu, a broken leg, or even cancer. With common ailments most docs have an idea of what to do…and not do. Most viruses take time, rest and fluids. Broken bones need to be set, repaired and immobilized. Cancer is a whole industry with fancy buildings, diagnostic machines, arsenals of drugs and doctors who specialize in each kind.
Chronic autoimmune diseases are many and complicated. It’s not as simple as fixing something like a broken bone. In most cases the illnsses are poorly understood by all involved. Every doctor can have widely varying ideas and treatment plans. Very little is standardized.
Most of the things wrong with me are rare enough that family practice doctors and internists might never have a patient like me in their whole career. Even specialists don’t see that many people with my particular combination of illnesses.
When someone gets sick, friends and family expect that person to go to a doctor or hospital, get fixed up and eventually get better. When folks with autoimmune diseases stay sick and collect even more diagnosis’, often healthy people get tired of us and our medical issues.
In the beginning of acute illnesses, people rally around….bring over a meal, run an errand, take you to appointments. For people with chronic illness, we often go through the hardest things virtually alone. Charity fatigue sets in. We don’t get better and are treated as malingerers. Not only do people get tired of our problems, they get disgusted with us.
It’s tough to always be fighting an uphill battle for health, understanding and respect. It’s grinding. It’s isolating. It’s scary.
I have been thinking about how Rhett’s problems affect me. Before he was diagnosed bipolar and as having dementia, I focused more on what he was doing to bug me. He could be loud, combative, a PITA, and just generally not very nice. Once he got on the right meds and I understood where his behavior was coming from, it was easier to take it less personally. He is still a huge challenge on a daily basis, but it’s easier to be part of.
I know what it’s like to be different and have frustrating medical issues. Even my love of Rhett, knowing that he has challenges and having some empathy…it’s still very hard to “walk a mile in his shoes”. I will never understand what it’s like to be blind, have brain damage, be bipolar and be facing dementia…among a zillion other things going on with him. No matter how hard I try to empathize, I really have no clue. The same is true with how I am seen. Most people don’t have a clue.
I wish we could all just be kind to each other.