Living with a Lifetime Disease: A Frustrating Reality

WhiteMaiden...I wouldn't ever want anyone to really understand. To understand they would need to experience this and I wouldn't wish this in anyone

BirdNerd it sucks....😥😥 Sadly unless someone goes thru it "walks in another's shoes" and experiences it They can't. And even sadder is they don't try to.

I feel the same way. It just feels like people don't understand what it is we go through and how devastating a lifelong disease is. Other people being overly positive about it feels cheap and not genuine, like they refuse to accept that we're going to be sick tomorrow, next year, and forever after that, and there isn't anything we can do to stop it.

I have found with the years of having it my family does not understand and want me to "power through", or I get that look that says "Again??" They don't understand most of what I have or go thru with everything I deal with. My son says he is tired of my "excuses". It is hard. I don't even get the " it will or you will get better, though I can totally see how that would get annoying.

I totally understand you! Sometimes all i want to hear is - "so sorry for what you are going through", without any hopes or condolences. Maybe you can talk with your fiance about it? I think its important he will know what you need.

Many people try to be nice and comforting, but sometimes they just don’t understand that they are just doing the exact opposite. Comments like “stay positive” or “be strong”, can really drive me crazy. Sometimes I just prefer people to say nothing.

My husband says the same thing as your fiance. 😏 I don't want to get my hopes up. I know that anything is possible, of course. There's just no cure at this time so 🤷🏾‍♀️

I completely understand thankfully my husband understands but his family....every few months I feel like they start repeating themselves that I will "get better with time" and all the suggestions are e enough harder