First and foremost, I should point out the obvious. Personal issues are simply that - personal.
I am choosing to share my experiences online and with those I meet however, that was my choice to open up, and it was an extremely difficult decision to make.
Perhaps more importantly, my choice to open up about my experiences with
Huntington Disease, In Vitro Therapy, miscarriage and mental health
does not open the doors to the comfort level of others dealing with the same issues.
Given that I have 20 cousins and about half of us are living at risk of HD, I felt this was necessary to point out. Not to mention others I know experiencing the other issues mentioned. Anyways...
As we all know, every person is different and has differing boundaries and comforts. My siblings, parents, cousins, friends, etc... are not necessarily willing to discuss the same topics I am. So please, please respect that. If they want to discuss their own health or experiences, allow them to direct that conversation when they are ready.
Moreover, understand that they may never be ready to discuss it. And that's ok.
Actually, it's more than ok.
It's their business, not yours.
There's a big difference between showing support and concern or being nosey.
In a world where social media blurs the line of privacy and personal space, we forget there are still lines that can be crossed.
Someone can be an open book when it comes to their baby's poop, dog walks or spilled coffee but may not be as comfortable talking about other things. And whether there's comfort talking about the condition of a family member with the same illness you're at risk for, it doesn't mean there's comfort talking about yourself. Frankly, this is a huge challenge.
It's rather hard for most people to say, "I'm not comfortable discussing that". It's so simple, but it's challenging.
Some days I'm sure I seem as if I'm telling everyone everything, but trust me, I'm not. Even I still have a sense of privacy, but I also feel a strong desire to educate others because there are people who can't stand up for themselves and find they are in tricky social discussion that they'd rather not be in. On top of which, I think it's critical to bring awareness and education to others about fairly unknown topics that pose so many challenges for those experiencing them.
Anyways. My point is, personal information is called personal for a reason.
Please respect the needs of those around you and don't pry into the private details of their life if they are not the ones starting the conversation. Don't put them on the spot.
Here is a small excerpt from the Huntington Society of Canada webpage about living at risk of HD, to offer you some further insight.
Emotional Impact of Living At-Risk
Whether HD has been in the family for a long time or it is a new diagnosis, there are strong feelings that come with the diagnosis of a loved one. There are also strong feelings accompanying the realization that one is at-risk. For many, the question becomes, “What does it mean for me?” There is no right or wrong way to react. Everyone is different.
Some people at-risk for HD may pull back from interaction with people who have HD, or from activities related to HD. Facing HD may be particularly painful for at-risk individuals at certain times during their lives, and they may need time away to come to grips with their situation before being ready to re-engage. Professionals and others who interact with someone at-risk need to keep in mind the particularly difficult situation at-risk individuals face when looking to the future and the future of loved ones.
Some people at-risk wonder how HD might affect their future relationships. It is important to know that many people who are at-risk have tremendously supportive friendships and find partners who are committed to a loving relationship.
It is beneficial for young people at-risk to learn about HD. The Huntington Society of Canada (HSC) can provide information and guidance to help parents engage in conversation about HD with children and youth in a way that is appropriate for their age and situation.
Thanks for reading.
:)
