Your lament is one shared by most people with autoimmune disease. There are probably many reasons for this. Some people might be "in denial" about our diseases because they don't want to accept the fact that we are vulnerable and not the same person we were. Others probably just won't accept it, because it could mean that we can't provide them with whatever they wanted from us. Still others might not want to be bothered with our problems. And some others feel inadequate and don't know what we need, so they just ignore our comments and complaints. And still others don't have any idea about autoimmune disease in general, let alone the individual difficulties of each one specifically. But fortunately there are those who support us no matter what, even if it's just this support group. We have to accept people for who and what they are. I always consider the fact that I had no idea of what lupus, or myositis, or _______, were or could do to a person. So possibly I was inconsiderate or uncaring without knowing that I was. I am sorry that you are experiencing this from those with whom you are closest, because that hurts the most. Best wishes to you.

Sorry my dear . But you are a lucky gal ... you say you husband has been incredible as he is the one you spend your most time with . I know it hurts that your mom is not supportive . We all here are very supportive . Hugs

My family just thinks I am a little nuts and maybe a hypochondriac sometimes. Until, I got a diagnosis, I know that is how they felt. But they are there for me.
In contrast, my friend told her mother she was going to a pancreatic clinic because they thought she had pancreatic cancer. Her mother erupted in wailing and said, "How come God always does this to ME!" No sympathy for her daughter at all.
There are just people who are so into themselves that they cannot see anyone elses need or pain. I am sorry, but your mother seems to be one of those. I am glad you have your spouse to be there for you.
Mary Ann

I'm sorry to hear that about your Mom! Everyone wants to feel love, support and understanding from their Mother. However, like others have said, try and be thankful for your husband and the ones who are there for you. I feel like these illnesses are hard for me to understand myself and I'm (we) living it. My husband is trying hard, he's trying to stay positive and waiting for the Plaquenil to kick in...and reminding me it can take 4-6 months. This morning my friend asked how I was feeling...I said horrible. She said, what's wrong, just the same stuff? It's hard not to feel offended, but it probably all sounds the same to them.
Love and hugs to you!! To all of you.

Thank you all. I definitely feel lucky to have my husband and some of my friends on my side, and I'm glad to hear you all understand. My mom has since sort of turned a corner but now she is insisting that this disease will go away and that maybe it's not actually UCTD, but some kind of gluten intolerance/food allergy/heavy metal toxicity. I think I like this version of her a little bit better than the one that was uncaring, but she's been coming up with some crazy explanations for my illness. She is clearly in denial about it. Anyone experience that part?

My brother says if I exercise more and get my mind right, I will be cured. I tell him to cure his own high blood pressure first.
Mary Ann

Haha Mary Ann, I understand that!

I can completely relate. Why, just the other day,my dad said that I use my lupus diagnosis as a crutch in life. When I told him that he greatly underestimates it, he said I overestimate it. The nerve.....

-Sparky

I'm so sorry to hear this! Again think goodness your husband is supportive. But it is hard not to have a supportive mom. Maybe try showing her one of the videos online there's a cute animated one from the UK that I showed my kids and husband last night. I told them I wasn't trying to garner sympathy but they need to know more about what I'm going through. Hang in there and just continue to educate your mom as he said it looks like she's turned a corner. It is interesting to see different reactions one friend who is amazingly supportive and another who doesn't seem to know what to say. Bella

Hi Bella. What was the name of that video? Sounds interestingly helpful!

-Sparky

Sorry for the delay! https://www.youtube.com/watch?v=_B6c6k3Ktqk

I've just recently been diagnosed and totally know where you're coming from. My family is super awesome but unfortunately they're 300+ miles away. (We're trying to move closer to them in the next few years) but my inlaws and hubby's family are here and they're no help. We have 5 kids under 9 and the only time we ever ask for help is when I have appts (I can't drive myself due to my joint pain right now) My mother in law is the only one who will help with the kids and even then she throws a fit. We don't ever go out and have dates or fun without the kids the only time we ask for help if for appts and she still whines and complains and tells us we have to be back by a certain time (like I can control if the dr is backed up!) But from what I've gathered in my research in the past few months is these autoimmune diseases are very lonely and people just don't get it and won't get it. So we just do our best. I'm so glad i found this site though! :) Hugs!

Hello TheAshness (please tell me: what does "TheAshness" mean?)... and yes, it is very difficult to receive any support from healthy family-members because it appears that many healthy people don't like to be reminded of the fact that there is one "imperfect" and "needy" family-member in their midst ...
It seems to disturb some people's imagination of a "perfect life" and as soon as we appear to be the reason for their disturbance, it does not seem to go very well for us...
... I would not be surprised if these sentiments are shared by many "chronics" here and it even happens that we are being told to "pull ourselves together" and there is no support coming forward at all ... I remember being told by a family-member that I should "pull myself together" when I suffered a stroke during a very severe SLE/MCTD-flare-up and whilst I was weeping about my future and career being "in tatters" because of the stroke, I was told by a family-member to "pull myself together"... After hearing this I decided that THAT was the very last time I ever bothered to talk to this family-member and I had nothing to do with them ever since... This decision has, over the years, very much contributed to my well-being...
I wish you all the best and don't forget how good it is to come here to Daily Strenghts and "talk" to us and share with us as we all seem to be in the same boat or similar boats...
All the best wishes from Kristina.

What a familiar story. Decades ago, when I was dx with Lupus, sjogrens, anti-phospholipid antibody syndrome, or and Reynauds, my mother told me it was harder on her than me because she was my mother, my father told me to throw away my meds because that was making me sicker and they both fought about whose fault it was that I had Lupus! Yikes. Ridiculous. At the time I had a caring husband but he dumped me after 13 years because I couldn't have his DNA baby. Our adopted baby was not good enough for him. He went on to have an autistic child with my replacement but that only lasted a short period of time. Sometimes you, yourself is the best support...it's consistent anyway.

My mom is the only one who cares, lost a boyfriend and tons of friends, so very frustrating!