Losing People in the Community
Today, I learned of someone who died from HAE due to an attack she had in her sleep.
It's sad to lose someone within a group. For many of us, I know it does for me, it also brings up the question will this happen to me?
I'm not sure what to do about these feelings, especially as there's not many things one can do to stay safer while asleep. I have woken up with attacks numerous times.
If you are worried you go see a doctor and ask them or tell your parent you are worried and they will most likely help you or an adult you trust like a close teacher or aunt or uncle or grandparents. i hope i helped. i wish you the best luck and i hope that never happens to you -MHM
AffyAvo,
I'm so sorry for your loss! Losing a member of a support group is always difficult.
I don't have HAE, however the form of muscular dystrophy I have has caused me to wake up choking on my own spit or from difficulty breathing. I know how scary it can be when your body jolts you up in a panic. Losing a member of a community would definitely flare those fears.
I know, for me, when I have lost members of groups- it is usually the remaining community I have found the best support from. Also talking to other people in my life such as family or friends about my fears can help them to also further understand what I am going through while helping me work through my emotions. It is a multi-pronged issue as you are dealing with the grief of losing someone you knew (regardless of length of time you knew them or "only" online) while also being faced with the fear of it happening to you. While they intersect and must both be managed- for me, trying to separate them so I can tackle them individually sometimes helps.
Here is the 7cups self help guide on grief https://www.7cups.com/grief/
and the guides in general- https://www.7cups.com/supportGuides/selfHelpGuides.php as perhaps one on anxiety or getting unstuck may also serve you? You would know best. I'm around if you ever want to set up a time to chat, just message me and I'll get back to you as soon as I am able <3