Talking About Illness

When you have a vast array of symptoms, they don't come on overnight, typically. Usually they come on slowly and snowball into a huge mess.

It is very hard to deal with health issues over and over and repeatedly having to set new baselines at a lower level for functional life. It is draining. It's scary. It requires a lot of change in your life. Not only do you have limitations that take away things you used to enjoy (sometimes even things that felt like huge, exceptionally important parts of your life), you also have a wide range of advice from doctors. If you fail to comply, they will sometimes drop you as a patient and mark in your chart the dreaded "non-compliant" - which can make new doctors reluctant to take you on a patient. In that sense, your life isn't your own anymore. You now have to be obedient to another person, who may or may not fully understand the ramifications and difficulties of the changes they want you to make.

These things drag at your soul. Depression, anxiety and fear are very common. Not only are you dealing with the immediacy of the now but also looking at the future with trepidation. If the past informs the future, then you know you are in for a rough ride.

It is helpful to be able to talk about these things - to share things you learn, to grieve over what is lost, to get encouragement about facing the now and the future. But these topics are not on anyone's top 5 conversations to have. People want to talk about good times and fun and things that touch us in good ways. That is now how these particular conversations go.

It is hard to maintain friendships because of this. Not talking about something that is a huge part of your life is hard and, to me, feels fake. I can say, "I'm fine" when someone asks how I am. But, honestly, I feel like a liar and like I am unable to be my authentic self, and unable to just own up to that I feel like crap because it hurts to move, I can't breathe, and I itch all over. 

Another component of this is having a genetic disease. I have many genetic diseases. I want my extended family to know about them. I want them to know that these issues run in our family and what they look like so they can get prompt care if they recognize the symptoms. I don't want anyone else to have to wait 30 years for diagnosis and treatment. I don't want anyone else to have to put their financial health in jeopardy by going to hundreds of doctors visits - most of which are not helpful. I don't want anyone else to have doctors look at them in disdain and tell them that they have a psychosomatic illness. It's hard. Actually, it's more than hard - it's humiliating and crushing. It was very hard for me, personally, to keep pushing to find out what was wrong with me. I quit a hundred times. The light that kept me going was wanting to be the best person I could be for my immediate family. I couldn't know if I were doing that without knowing what was wrong with me -- whether it was curable or treatable. Waiting sometimes causes irreversible damage. I didn't want to be kicking myself later to find out that I had a treatable illness, but missed the window to get better because I stopped looking. 

But ... back to talking .. family members are just people. They don't like having the conversations either.  Social skills are not my strength. But I am pushing past my own discomfort to try to help others.

There are many aspects of living with chronic illness that suck.