Family Support...

[darlingdivatx]

I'd like to know from anyone out there who's dealing with an undiagnosed health condition, that is disabling to the point you can hardly function, what kind of support you get from your family. Do they understand? Do you have to beg for help when they don't understand? Are you able to discuss what you're experiencing openly with them, or do you feel like you have to hide it because they don't want to hear it anymore?

I'm feeling very isolated and don't feel like I can turn to those closest to me and tell them what I'm experiencing, whether good or bad. Sometimes it's very scary when you don't know what's going on and your experiencing something that you don't know what it is.

My problems are neuro. For example although I've been relatively stable lately, last week I was experiencing something strange with my breathing. Even though it wasn't anything severe at the time, it just makes me think about the future and whether or not this might be an indication that I may be losing the muscles that support breathing.

Just wondering how others deal with these types of issues?

[angel677]

I here you. I have no support. My husband is always gone only home every other weekend. My children could care less. I have trying to tell them my fears and what was happening. My husband always has something wrong with him that I need to comfort or give support for. I feel like saying "Hey what about me?". I never do. I just rub whatever is bothering him or tell him how sorry I am that he feels bad, just whatever to get him to shut up.
As for my kids I think I would have better luck getting my dogs to help me. They always make me feel like a burden.I have to throw a fit just to get them to do their chores and asking anything more is like ragging war.
Friends-- well they are always there when they need you, but I can't seem to find them when I need them. If by chance they do answer the phone then I end up listening to their problem instead.
I am sorry that you to feel alone. It is scary. I wish that I could help, but I have not yet found the answer. good luck
angel

[Cindy1971]

It appears that you are not communicating your illness to your family but working on a presumption that they will dismiss it without taking it seriously. I have been guilty of doing the same only to realize later that it was me who was not doing it right.

Undiagnosed symptoms can be a hard pill to swallow for family since you don’t really have a proper explanation so it makes it even more difficult for others to even have an idea of the illness. Not even doctors get it. Did you discuss the breathing issue with your family or did you keep it to yourself?

I will advise you to be open and share your symptoms with your family. Reflecting back, there were occasions when I may have been too demanding. It is those situations that you should avoid as it could end up isolating you more. Do your part and keep your expectations within reason knowing that perhaps if you were in their place, you would have an equally difficult time.

What neuro problems do you have? Good luck.

[memorylaffs2]

No support at home means we have to look after ourselves as agressively as we possibly can - if we are to overcome these medical issues and get healthy again . I sympathize with you , being undiagnosed myself , and being out of state from family & old friends - it can make a bad situation unbearable when you live with an insensitive person . Personally , I get by with faith , and the kindness of strangers . Have you ever noticed , that you can be at your lowest when out of nowhere , a stranger shows incredible kindness ..when you need it most ? A week ago ,after upsetting circumstances ,  I was late for a new referral to see a specialist , and when I called ahead - they assured me the staff would stay and wait for me - even tho it was 5 P.M.
All patients had gone , and I was the only one left to be seen - yet I was greated with smiles ,  friendship & kindness , when I needed it most . Don't ever loose faith .