Wednesday, June 5, 2013

Living with a chronic illness, part 1 of 2

Up until earlier this year, I have been blessed - truly and gloriously blessed - with very good health. I have always had the three A's: asthma, allergies and anxiety, but they are fairly mild by now and all well managed. I'm used to them.

Then something else came along. I was diagnosed this year with ulcerative colitis. It was a disorder I knew absolutely nothing about. I'm not sure I'd ever even heard of it. But in a nutshell it is a suspected autoimmune disorder in which the body attacks its own colon and can make you feel pretty bad.

And from that experience, I have just a tiny glimpse of what it is like to live with a chronic, lifelong illness you cannot ever get rid of, that could someday lead to other complications. That, my friends, is super scary. Especially when you're only 41!

Before I go on, I want to say that I'm posting this to maybe give ideas to someone facing a new illness or to their family members who are trying to support them. No one should feel bad for me because there are worse things to get than what I have. Much much much worse with a lot worse symptoms and future problems.

And mine is fairly mild, there are a variety of medications that help, and I can achieve and maintain remission, hopefully for long periods of time. So, still, I am super lucky.

But for a few months while I worked to get it under control, I felt bad a lot, tired and angry and confused and scared and miserable. I didn't feel like me at all. What defined who I am was changing.

I have time and again seen depression go along with chronic illness. When I was in the hospital with postpartum depression, alongside me was a beautiful 20-something athletic girl who had been diagnosed with multiple sclerosis and a wonderful 34-year-old man with severe rheumatoid arthritis. They fought horrible depression as their health changed and declined.

The girl lost custody of her adopted daughter. The man could no longer work to provide for his family. He agonized that his wife had to be the bread winner. I wonder about them and how they are now. I pray for them.

I have a better idea now why a person might spiral into that state of being over time. Here you are used to being strong and healthy and suddenly, WHAM, you can't do what you used to anymore. You don't feel the same anymore. When your health changes and you have to make adjustments and choices you never wanted to make, that is really really hard.

You want so badly to just feel normal again. You wake up every day and think, "What is today going to be like? Good or bad?" There are times you pray for God to just help you through this (thank God I have God!). You feel betrayed by your own body and you want to shout at it and make it stop doing what it's doing! And you are resentful that you did everything right - quit smoking, very little drinking, ate healthy, kept weight down, exercise, etc. - and you still got sick!

It feels unfair and it's easy to get discouraged and tired and, yes, depressed.

So, tomorrow - now that I'm finally feeling lots better - I will list a few things I think helped me in the hopes they might help someone else or help someone else understand what a loved one is feeling.

Here is part 2 on Coping. 

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