Knowing my enemy: the flip side

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

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.


2 thoughts on “Knowing my enemy: the flip side

  1. Aren’t good husbands great!
    You are a sensible Sarah, you have actually managed to flip the coin and made complete and utter sence of what knowing can do and probably lifted the spirits of most of us who need reminding of the positive side to this.
    Still inspiring xxx

    Liked by 1 person

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