The Hardest Part of Not Being Visiblly Ill.

Just a moment ago I was told that I was a lying and faking all of my symptoms. Normally this would not be a big deal but this was different because it came from family. The bad thing is that this is not the first time my family has claimed that I was lying and faking. It is especially hard because I have yet to be diagnosed but the symptoms are clearly visible when your in pain, cannot walk without the aid of crutches, and so on. I am not even sure what I am asking but I guess it would be two things...

1.) How do you cope with people (family, co-workers, friends, etc) claiming that you are lying and/or faking?

2.) How can you prove that you are really ill?

Torden, hi and welcome to the forum.  I don't think I've talked to you yet.  Yeah, I know - if I had a dime for every time I've wished someone could feel my pain, I'd be a VERY rich woman!!    Especially when they see how we move, and all the fun stuff we DON'T do - I mean, who would want to have to ask for help with everything if they didn't need it?  Oh, right, because it's so enjoyable to always be left behind and live a less interesting existence.  That must be it.

People can drive you crazy.

Debbie

I feel you. My hubby has Cronic Kidney Disease stage 1 and really he's fine once in awhile he'll say he has pain, but since this last flair all of a sudden he can't move?I've never seen him like this and I know part of it is because I had been in bed for 2 weeks. I have been lucky with friends and family that they do believe in pain but yet hlaf of them dont believe it's fibro they're always looking for this magic disease I might have...I'm like I'm 99% sure it's fibro so there.

Wish I had a good comeback but I don't

So sorry that your family members are doubting your illness. Maybe you should refer them to http://www.invisibleillness.com and let them read about so many other people who are suffering from illnesses that are not visible to the human eye. If they take the time to go there, maybe they will understand your pain a little bit more.

I pray that you can get an appointment with the rheumatologist sooner than later.

Loving Hugs,

Shari

Thank you very much Shari, it is nice to meet so many helpful individuals like yourself.

I wonder how much longer it will take them until they can use this as an actual test.

Hi Torden and welcome :)
I am sorry you are having such a hard time with your family, I went through the same thing. Until my son's last birthday this Feb, no one in my family aside from my husband and son (who see me everyday) believed I was sick. To deal with their little comments "Stop whining" "Everyone has pain, stop making such a "thing" over it" and so on I vented to my husband and kept a journal. This last Feb I had driven 3 hrs with my newly 5 y/o son to my grandparents for a family party. During the party my legs gave out, my step father had to pick me up and my mother checked my vitals (she's a nurse), my blood pressure was high and my pulse was low. When I came around they asked what happened and I explained as politely as I could that because of the pain from Fibro and arthritis my legs have a tendency to say "To heck with this" and give out. Since then they've tried to understand better.
I hope your family gets a 'wake up call'. Best of luck and *gentle hugs*

Sorry for the late post, yesterday was very busy for me.

GSDgirl - My appointment is set for September 16 at 10 A.M. I am so happy that they did not ask for a referrel seeing how I do not think I would be able to get one before then. And thank you, I know this is a great place in such a short amount of time.

MrsCavbar - I had an incident just like that. My parents came up to visit a couple of weeks ago, I had told them prior to their visit that I was on crutches because I cannot walk without them and it was getting hard to even use them (still using them and still getting harder by the way). They suprised me with a wheelchair, unfortuently I cannot use it to actually get around out side due to it not being manual and only used for transportation, but they are going to be getting a better one soon. But they told my friend that they honestly did not believe what I was saying until they saw it themselves.

Sobermommy - I have a life long friend that is my roommate at the dorms, he helps me with alot of things and has told me more then once to ask if I need anything....I still feel awful for not being able to do anything without help. He has supported me a lot and I am glad that he is there for me. As for my family I know my parents believe me now, all they had to do was see me. So I think when I actually go home over break they will all understand....at least I hope so.

Thanks, I am too. ^_^