Response to Undiagnosed: (Un)Social Life

diseaseonmysleeve:

burningweird: Yes and no. In your case you would probably be helped in people would not try to shove food down your throat and give you a one word answer on bathroom trips. (Honestly though it depends on the person as I have never had an issue with no one “getting” my undiagnosed digestion issues even though the house only has one bathroom)

It doesn’t help keep friends very much though. A lot of people are understanding at first and then leave when they get fed up. They might feel bad about doing it but they just lose interest in you when you are gross and boring. It isn’t an irrational fear because people do it. I know when I was on the butyoudon’tlooksick boards before they crashed a lot of people there were abandoned by both friends and family. :/

(The emphasis on the quote above is all mine).

Thank you for replying to this post; it means a lot to me to be able to see someone else’s perspective on my own thoughts, and not just anyone’s perspective, someone who understands. I know that a diagnosis isn’t a magic cure, although it may lead to a cure or treatment, and that even with a diagnosis these symptoms will still have the same effect on my life.

I guess when I wonder if it would make it easier, I just mean if it would make it easier for me to deal with what I am dealing with. Would an explanation make me feel less weird, awkward, embarrassed, guilty, sad, etc?

I agree that a diagnosis would keep people off my back with the food issue and make bathroom trips slightly less awkward to have to explain. 

Unfortunately, you did reinforce my fears about friends. I do get afraid that if everyone sees this part of me they will just hate me, and leave. Friends do lose interest when you stop accepting their invitations and keep cancelling plans. Eventually they just stop asking. I have also heard of people with diagnosis say friends have done things without them and then said, “oh I would have invited you, but I didn’t think you could handle it because of your ___.” This is really unfortunate because if we don’t have friends or social lives we get even more isolated and then some of us probably figure, well I must deserve to be miserable, what is the point of trying to get out of bed? And then it’s just a huge downward spiral. 

It’s an unfortunate but super effective way to find out who your true, life-long friends are.

-Sunny

I think it is really dependent on the people you are interacting with. Since my Dx is something they probably haven’t heard of before, I still have to launch into a long explanation if I just say “I have erythomelagia” so most of the time with people I don’t know very well I will just say “I have a neurovascular condition”, because that is a cut down explanation and giving them the impression that it is as serious as it is.  I often don’t even need to tell them what it is when doing that. So I would say you should ask yourself what you know about your symptoms in summery and try to find some ungross buzz words to get the point across easily. It won’t work on nurses without explanation but it usually works on everyone else.

As far as losing friends goes, I didn’t loose any close friends. I lost the ones that are not going to necessarily call me to hang out or whatever anyway. Those are the people who in my experience are the “get well soon” type, and then when you don’t they get tired of it and leave. My mom is incredibly supportive. My best friend is wonderful, my extended family is still pretty nice (it is kind of hard to tell since they are going through complicated issues themselves right now that they need to deal with).

It is sad to lose any sort of friend but honestly? I have lost those kinds of people plenty of times without becoming sick. You don’t want to be friends with that sort of person anyway. I’ve made new good friends since, it doesn’t prevent you from doing so when the less attached people bail. These are better friends because you can tell them up front what is up and you don’t have to censor yourself and your feelings as much.