As soon as I hit “publish” yesterday and read my blog entry to my husband, we both said: “BUT …”
… and had a discussion that included the following points.
Before I got tested, I was on a downhill slide. My work and personal relationships were going to hell in a hand basket and I had couldn’t put my finger on a reason. I was an emotional mess. There was no help for me. I told my husband that I thought if things had kept going in that direction, I didn’t know how he could have stayed with me.
I would have wondered about my symptoms either way. I already was wondering before being tested and while I worry about symptoms now, the worrying doesn’t produce as high a level of anxiety as it did before I knew.
I would not have been able to get disability. The Caring Voice Coalition, a nonprofit that staffs attorneys, does claims for free for people with HD living in a certain geographical area. (They know what it is.)
I probably would have been fired from my job. Aside from a few innately good people there, most people treated me as if I was purposely doing a poor job. Or as if I was lazy. Or crazy. It was a bad scene for everyone involved.
I wouldn’t have been able to take advantage of all the HD resources out there. I would never have found HD Reach and gotten the help I needed. I wouldn’t have my facebook HD family, or my friends at WeHaveAFace.org
Since I found out I had HD, I have had lots of therapy and I am taking medication that helps to control my emotional symptoms. Well, it helps most of the time. Anyway, I have friends. I still have my husband. I even have a part time job.
So, while there is the constant weight of knowing, which on a bad day seems like an anvil, my life is lighter and brighter now than ever before.
It’s a trade-off. I can’t not think about having HD, but that knowledge has given me my life back.
So even if it hurts, I’ll suck it up for a decent quality of life.