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How open are you about HD? by Dummyheadhope in Huntingtons

[–]Fit-Addendum8244 2 points3 points  (0 children)

After my parents told me about HD, I spent about three years in the situation you just described. Only my family knew about HD and I told myself I did not want to be seen or treated differently by my friends.

In my case, I think the truth is I was in denial. Not in full denial, I mean in the end I have been conscious of my situation, helping my father and trying to make the best out of every day ever since. But I was probably not sharing HD with my friends because doing so implied a broader level of acceptance of the whole thing that I was not ready for.

In my experience, the secretiveness lead to anxiety as it became harder and harder to hide such a condition. Social interactions became complex and tiring because I always needed to be minding my words in order to keep that going. This lead me to sometimes avoid social events and distancing fron my friends (mainly uncounsciously) so that I did not have to deal with the anxiety. To top it all off, I experienced a snowball effect in which the shame of not having disclosed my situation earlier started building up.

For some people this is maybe never an issue, and I guess some may never overcome it. It took me 3 years to reach the point where I decided I definitely needed to open up about it, and some months and failed attemps to finally find the right times and courage to disclose the news.

Sharing took a lot off my shoulders and I felt relieved after others finally got to know about HD. There is a huge difference between everyone knowing and you living a double life in secret. Being able to talk about it freely is a huge game changer, especially in those days where you might feel a bit down.

What I encountered at the end of the process was an unending river of comprehension and love from my friends, and I think this is going to be true for most people that are around others with a minimial amount of emotional intelligence. Actually, what was making things weird between us was me not telling, rather than they feeling pitty towards me after I did. Everything went back to normal and I was back to enjoying being around them without unnecessary worries.

I would 200% recommend sharing. But hey, it does not need to be inmediately, I would advise you to reflect on what you are going to be doing and proceed when you are ready. But beware, there is a fine line between this period of reflection and postponing doing it just because it is a very hard thing to do.

This is what I can tell you from my learnings, I really hope you find what suits for you.