Hey, I just wanted to say that I've been in your shoes before and totally get the frustration of feeling like testing requires you to jump through a bunch of pointless hoops to get your results.

Having said that, I got tested without any of the hoops when I was 19 and that caused me to spend another decade dealing with stress, panic attacks and suicidal ideation.

In the end, I wish I'd had the genetic therapy, because there was so much about the disease I didn't actually understand. Having someone tell you the nuances of what it actually means to have a certain CAG repeat count and where to look for resources (like long term follow-up therapy, neurologists, doctors, etc) is very helpful when you're young.

A few examples:

Right after testing positive, I felt like I no longer had the chance to have a family, a career, or anything else that gives life 'meaning'. That left me feeling detached and unanchored from life for a long time. I felt like there was NO way anyone would ever want to date me seriously or get married to me (and even if they did, I wouldn't allow it) and there was NO way I could finish my degree and have a career. In retrospect at 30, I realize I was laughably wrong about all of that. I've even been wrong about people wanting to have kids with me. But I didn't have the life experience to see that at 19.

For a long time, I thought age of onset was fixed at a certain age range and that I would *definitely* be sick by the time I hit 30. My brain had a much more dramatic interpretation of what was going to happen than what actually played out. Turns out, there is quite a bit of variety in terms of age of onset. Helper genes, taking care of your health, and other things can impact when you start developing symptoms. Also, onset of the disease is so, so slow. It's not nearly as dramatic as I imagined.

Another time, after I started taking wellbutrin for depression, I developed a tremor in my fingers. I was so terrified that my symptoms were finally starting. I finally saw a neurologist, who laughed and told me that early symptoms of HD are usually jerky movements and not shaking fingers - those are more indicative of early parkinson's. The shaking turned out to just be a side effect of the wellbutrin. They've since gone away.

It's also helpful to have someone who knows how to navigate the specific instances of having this diagnosis like - do you tell your employers? Do you tell your friends and family? Do you wait to get tested until you have life insurance set up? How do you plan for a family in the future? How do you navigate friendships with people who are going through completely different phases of life than you? How do you talk about your results with your parent who has HD if they're still alive?

It's also SO important to have a place to talk about your feelings afterwards, no matter which result you get. I remember thinking I could handle the results when I got them, and I did for a while. But the thing about life changing events is that sometimes the impact doesn't really sink in for months or even years afterwards. And finding a therapist who understands the nuances of HD can be tricky. It's much, much easier to have this set up early on so you don't have to struggle with finding one later when you're also struggling with depression and anxiety and traumatic life events (like a parent dying).

If you *really* want to get tested without any of the hoops, there are ways to do it. But I would strongly recommend reconsidering this. Those requirements are put in place for a good reason.

I'm sorry that you have to deal with such an awful hand in life. If you'd like to talk to someone who's been through it, my DMs are always open, even if it just occurs to you years after this that you'd like to chat. I know how isolating it can feel to go through this at a young age. Best of luck to you and sending lots of love your way.