Alice and the Looking Glass

Testing positive for Huntington's Disease is one of the most difficult life challenges that one can face. I found it to be the equivalent of Alice through the Looking Glass. Everything is upside down and backwards, nothing is normal. It is like your entire world as you have known it to be has changed.

There is life before Huntington's and life after finding out you have Huntington's. While things will never be the same as they were before testing positive -- and really, how could they be? -- life will eventually return to running on an even keel after you have had some time to digest your positive result.

It is normal to be angry, sad, depressed, and to think that you can not possibly survive the news. But you will, one day at a time; the world will become brighter with time. People ask how long it will take to start to get a grip on it. Each person is unique in how much time it will take them to come to terms with their diagnosis. From people I have spoken to who have gone through it, it seems the average is about six months to one year.

Talking to someone who understands HD or has gone through the testing process is a great help. Knowing that you are not alone in this journey can be a very healing thing, especially with all the family secrecy that seems to go hand in hand with HD. So many people still treat HD as a family secret when we have nothing to feel ashamed of here. We did nothing wrong to deserve this, we were just picked by fate for a life more challenging than most.

I have been surprised by some people who think they are being punished for something they did in life, when they test positive for HD. Considering that their HD status was determined upon the moment of their conception, it is easy to see that there is no connection there.

When I first tested positive for HD I withdrew within myself, and tried to push everyone I loved away. It was quite the rollercoaster ride of emotions for awhile. I would try to push my diagnosis out of my mind by it just kept coming back. I thought about HD everyday and all the time. But after I passed through that initial shock phase, I was able to look at the whole thing more objectively. And, after some time had passed, instead of regarding the HD as an enemy or an outside force, the HD just incorporated itself as part of who I am.

You can drive yourself crazy looking for symptoms. Having Huntingtons makes you look at yourself in a very microscopic manner. It's like looking down the wrong end of a pair of binoculars, every small thing can look huge.

I played the "Is this normal, or is this Huntington's" game for awhile. Wondering, for example, if I was just clumsy, or if it was the HD. Until I realized that determining the source would in no way change the bottomline. I am clumsy. Why made no difference.

There are four main categories: At-risk, gene positive, gene negative, and being symptomatic. Just because you test positive for the gene does not automatically mean you are symptomatic, only that you were found to have the gene that causes Huntington's.

When you read all the different information about HD and the list of possible symptoms, remember that no one person will have all those symptoms. The list covers all the possible symptoms, for a vast variety of people. No two people with HD are identical, each person will have their own individual list of symptoms and levels of severity.

It has been nine years since I tested gene positive,and I am in the early stages of Huntington's. But I remember like yesterday, the day my world was turned upside down. The feelings of helpness, hopelessness, and deep despair. There is no right way to cope with a positive test result. Everyone copes the best they can, in their own way, and at their own rate. It feels like you are going crazy, but you are not. You are going through major processing. There are no quick fix or magic words, it will just take time.

There have been alot of exciting HD discoveries in the last few years. Scientists have said with confidence that it is no longer a matter of if HD will be cured, but only a matter of when. There is every reason to be hopeful. Reading up on all the different breakthroughs will help to lighten your mind. I especially like the gene silencing discovery. It's amazing!

If I could go back to the day I tested positive, I would tell myself the following things:

- Talk to others with Huntington's. They are walking the same path and know the way.
- Try to only deal with HD Clinics because they are HD experts.
- Tell those around you. Lots of energy can be wasted trying to hold it together.
- Educate yourself about HD. Knowledge is power.
- Allow family members their denial. It is also a process for everyone who loves you.
- Give yourself some time and be gentle with yourself.
- Knowing why you do things will not change the fact you do them.
- Fighting an emotional breakdown takes much more energy then breaking and rebuilding.
- Feelings of anger, denial and self-pity are completely normal.
- Keep busy. Too much time to think can be hazardous to your health.
- Feed your soul. Do those things that you enjoy.
- Share your feelings. No one can be there for you unless you first let them into your head.
- Needing other people does not make us weak; it is what makes us strong.
- No amount of worrying will change what is, or what will be.
- Don't let yesterday, or tommorrow, use up too much of today.
- Believe in the scientists. One day all of this will be a bad dream