This post was written by Dean, an American living with Idiopathic Hypersomnia:
I still feel like a hypocrite as far as the whole understanding thing goes because people close to me still don’t get the degree to which my hypersomnia affects me after 30 years of dealing with it and about 25 years of talking to them about it, but now I realize that I have talked about it with them but I have never REALLY talked about it with them.
If you have close friends or family who still don’t get it, have you ever REALLY tried to get them to understand? Have you come prepared with a list of things to say, sat down at the kitchen table, and said “We need to come to an understanding on this.” and focused on their reactions so you knew that you were speaking in a language that they understood and tried working different angles until you knew that everything you were saying really hit home with them? Have you stubbornly stuck a conversation out until the other person said something like “Wow …. I knew you struggled by I had no idea that you struggled in so many different ways!” or even a simple “Huh. I guess you really have been trying.”?
I haven’t, but I sure have felt sorry for myself plenty of times because of hurtful things they have said out of caring because it just doesn’t make sense to them.
If you could use some help with things to talk about you could make a copy of my understanding letter to cover the basics. If you haven’t sent it to anyone yet that would be a good foundation to start from and if you have sent it to them but it didn’t help much you could cover those topics and try to get out of them what they didn’t get about each topic. (If you do that it would be cool if you could tell me so I could try to make improvements to the letter for future users.)
I think we have a tendency to feel that doing so would be drilling other people for our own benefit and maybe we just aren’t up for that for whatever reason, but if they really care about you there is a pretty good chance that the lack of understanding has caused them more pain than you. Maybe yours has been more intense for a while after they have said something, but they might spend a lot of time worrying about you on a regular basis and worrying that they have said the wrong thing or that they should be helping you more or even that they should be helping you less because THEY JUST DON’T GET IT.
So next time you have the opportunity to have a good talk with people who really care about you, do them a favor and sit down face to face and do whatever it takes to help them understand every aspect that you can think of and be persistent for their benefit as well as your own and don’t get up until you have succeeded. Maybe if you reach them they will talk to others in a language that people without hypersomnia understand and everyone will start to come around. If nothing has worked so far you either need to try a lot harder with your approach or take a completely different approach or both.
I don’t want my parents to leave this world disappointed in me, so something has to change.