[scrapperjen]

I think my mom is finally realizing that I'm not making thing up. Having something to call it helps.

I was talking to her last night and telling her about all the new info I learned on this board yesterday about fibro flares and UCTD flares, which I didn't know one could have. She again told me to quit reading stuff and looking stuff up on the internet. I told her that I really had no where else to go. These things commonly occur in families, but I'm the only one (except a sister who has fibro) so I can't go to Aunt Suzie or Cousin Ann or whatever and ask them what to expect or if stuff is normal. I told her I joined a message board and I am learning stuff every day. I also told her that I can't just stay ignorant and uninformed with this. I have to know what things I have to watch for, avoid, or do and this is the only way I'm going to do that. My dr. didn't give me anything about it.

I am an internet freak though -- when my son was being watched for Autism, I devoured everything I could on the subject and became somewhat of an "expert" on it. Then he was thought to have Asperger's Syndrome, so I did the same thing. Now me with all this, I read stuff all the time. I KNEW I had an autoimmune disease, so I read up on several of them and eliminated most of them and was left with Lupus (didn't find UCTD or didn't pay attention to it). That was the only one that really fit, but labs don't fit. Now I see that UCTD totally fits. Fibro was a big surprise to me, but that fits too I guess.

So I think she is accepting it. My sister seems to have more pain than I do with the fibro, but from our conversations, I'm very similar. Maybe I'm just starting out. I told my mom that it's different for everyone and told her to go on the internet and read about this stuff. She didn't want to do that, she said she would learn from me. I think she doesn't want to see the "bad" parts of it and knows I won't tell her those unless I absolutely have to.

 

[Katharine]

Hi Jen,

I'm glad to hear that your Mum might be coming round, it is difficult to handle people close to you not believing you.

I must say I'm very lucky that way - my Mum went through all the disbeliveing herself and now everyone in my family knows whaét auto-immune diseases are.

I hope things continue in a more positive way,
Katharine

 

[Clare.T]

This all sounds excellent to me, well done!

It's much better that you provide your family with the information. The internet is the most wonderful thing in providing support and getting reliable information and the best treatment possible, so long as it's used sensibly.

All the best
Clare

 

[mysharonna]

Hi Jen,
Im sure it feels good to get some validation from your mom. Its hard to have the "nonbelievers" in our friends and family community. What really matters is you are taking care of yourself and getting treatment for your symptoms.

Hope you continue to feel better,
Sharon

 

[cispence98]

You know I still when I read something email it to my husband for him to read so that he stays in the loop of whats going on sometimes hearing someone else say it makes people respond better, go figure:shrug: Like if I see something that explains how I am feeling that day I will email him the article and he will always come back and say I know and I am like just making sure, its esp hard with guys because they think that everything gets fixed:wacko: like just take a pill and you will be all better the other night we faught over the idea that he things lupus is a disorder not a disease I think I won that disagreement:more: Anyway sometimes just handing them something to read on the subject without saying anything and walk away they eventually get it:yes: Good luck and remember we beleive you!!:bigsmile:

 

[goldensgirl]

I don't know how to get people to 'get it'. I think it isn't possible. My mom, who has Lupus, hashimoto's, etc, went through all the disbelieving from others, and still doesn't seem to get it when it comes to me. Everything I experience is treated by her as though it is minor, and I'm just worrying too much. We hardly even talk anymore because it just ends in upset, and I feel even more alone.
On the other hand, I could really use some emotional support from my family, as I have no one. I live alone, and don't know many people in my community. My friends have their own lives, and overall, they really don't get it either. They tend to think that if the tests aren't showing something clear, a person just isn't sick. Lots of people have a hard time understanding that there are illnesses which don't just have a specific test to diagnose it.
I have some undiagnosed pain, Rheumy thinks is part of the Lupus, but this isn't certain. I am waiting for a number of investigations. Sometimes I think it's just best to say as little as possible to others, so as not to face the comments that they make.

 

[LolaLola]

Dear Jenn, some people become quite hostile when they are unable to "fix" your problems. I have had this myself but luckily not recently.
x Lola

 

[goldensgirl]

Yes, that may be part of the problem, maybe parents don't want to accept how bad it is, but in the meantime they make me feel very alone. The comments hurt, and so I tend to avoid them more now.
It is lonely, but sometimes it hurts less that way.
They will have to come around in their own time, I can't force them to believe, and I can't possible make them understand. In the meantime, a bit of online support will have to fill the bill.
Have to set up therapy as well, but hard to get to app'ts most times.