I'm part of an email support group for scleroderma patients and their families in the Southeastern PA area.
I had some trouble with the question for this week and when I finally was able to answer this evening, it just felt like it belonged here.
This week's question was - What helps you cope with scleroderma?
I've been thinking about this one since C. posted it. My first instinct was "Not very well." Honestly, this disease has taken over my life. I'm still a very young woman. I just finished college. I was planning on starting a career and a family. I had an active social life. Now, I have no social life besides my family. I have no job. I have such bad joint pain, fatigue and shortness of breath that there are many days that I don't even get off of the couch. I may not ever have children or be able to start that career for which I studied so long and so hard.
Hope is how I'm coping right now. Hope that I might be close to a cure, hope that life might be normal, whatever that is, hope that I'll be able to have kids, hope that I can be a productive member of society again.
I write my blog. That helps. It gives me the freedom to let it all out.
My family...well, I feel like I have to cushion all of this for them. My disease is active and aggressive. They're always telling me how great I look and I hate having a negative answer to "how are you doing?" every time someone asks, so I lie.
[Ed. Note: Yep, some of the family reads this, but some things are easier to type than to say.]
But the best way for me to cope is to be as active and aggressive in fighting this disease as it is in destroying my body. Over the last year things have turned from bothersome and limiting to life-threatening and inhibiting. For a while I was depressed and defeated. Then I got angry, really pissed off. At the doctors who weren't doing enough, at life for sticking me with this disease, angry at my age, at my body.
Let me say that being angry is a great motivator. I decided to take my treatment into my own hands. I found doctors who were willing to be appropriately aggressive and now I'm able to fight with all I am, to work as much as possible to reverse this disease's hold on my life. So that's how I best cope, I fight. I'm having a stem cell transplant, I'm doing IVF to preserve my fertility, and I'm doing my best to stay aggressive.
If that fight fails, well I really don't know how I'll cope. Pulmonary hypertension is fatal and scleroderma has induced an aggressive form of interstitial fibrosis. If I lose this fight I won't be coping with living with a chronic disease, I'll be coping with dying of a terminal disease and that's not something I'm ready to think about yet.