Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group GRRR Family

I have been diagnosed for 2 years now and just found out some family are still questioning my honesty.
I am talking about close family that see me at least one a week.

I was telling my mother how I sold a plant to a lady and got talking and found out her adult son has AS. My mother then replied that I should tell my aunt because she doesn't really believe in that others have this disease. My aunt had actually asked my mum if she had seen my x-rays to prove what I have is real.

What the??? No I just enjoy the attention, the never ending specialist appointments, the endless medications and reactions to those medications the days spent not being able to move. I once read my x-ray, ct and MRI results to another aunt and her responce was "how are you even able to walk"
Then when my daughter was diagnosed I was questioned as if I was one of those parents that wants their child to be sick.
Don't worry about that FACT her x-rays showed grade 3 SI damage.

I know we shouldn't have to justify ourselves to anyone but it just makes it that much harder to cope when you have to face this sort of thing every week. I mean does she think the government just dishes out $20 000/year drugs to just anyone?

Sorry about the rant. I am used to this from people that don't know me so well but not from family that have seen me at my worst.

I think my problem is that I refuse to let AS own me. When I am feeling not too bad I push myself. Yes I pay for it later but they don't see that. All they see is me pushing myself and they can't see the pain I am going through when I do this.

Again sorry for the rant I just cuts deep sometimes.

People you regard as 'close' should take things at 'face value'; not need some form of "proof"

Friends and family like that you'll never need an enemy.

I just don't talk to people of that sort - no exceptions. Thankfully in my life that wasn't many people.

Try to make your epicycles of interaction and activity be as smooth as possible and don't ever talk to the source of the problems.

You can only control you, get rid of the % that keeps you from being 100%.

I know at times situations make this hard, I know first hand I did it. Moreover Im the better for it, no matter how hard it was.

I am so sorry that you are dealing with these family issues.
I have been there myself. I suppose "most" of us with chronic illness have.

You just have to "not care what anyone else thinks; whether they believe you are sick or not". I know one of my sisters feels that way and never includes me in anything because "I didn't figure you would feel like it anyway." Jab. Jab. I just don't care what she thinks anymore.

I hear people say, "Wow, you are looking great. I am so glad you are so much better." I always think if you could only see me without all of this health painted on and smile fixed in place but that's ok. I have said "Great. I am glad I don't look the way I feel." but then I gave that up and just say "Thank you".

Sometimes my daughter who lives away doesn't seem to understand why I don't travel more. I wish that were different. I hate for her to think I just don't want to.

I am like you and I push myself. Today I am really paying for spending 1 1/2 hrs. in the sun (a Lupus no-no) taking care of a neighbors flower/veggie garden and another hour helping my husband in the afternoon do our elderly next door neighbor's yard. Today I can barely move but it was so worth it.

I spent a full year in bed and I don't want to be there any more than I have to so I keep going because I am afraid if I quit, I will be quit.

Just hang in and live your life and remember you don't have to prove anything to your aunt or anyone else.

I suppose I ranted also.

Hugs and Blessings.
Possi

Wow(sarcastic) - here I thought only my family were that way.

My sister asked my aunt if I was sick as I was stating to her. My Aunt told her it was all in my head. My sister now has nothing more to do with me. (Haven't seen my aunt since 2007), yet she can tell my sister (2011) the facts of my health.

My DIL tells my son his pain is all in his head. My DIL knows this because my son's - mom - me - has too many Psychological issues - Oops did I tell you she has grade 12 education and no education for Psychological training. She knows nothing about my genetic history, or my medical diagnoses. My son is in so much pain - he is a truck driver - she tells him to work through the pain. He doesn't have a doctor - she got a new doctor for herself - but refused to put my son's name down, when applying for the new doctor. (Oh yeah - mental illness runs in my DIL family - 3 relatives committed suicide (1 in mental ward at local hospital)).

Wish you didn't have to deal with this, as well with your other health issues. I know what your going through. I am sending lots of hugs, and love your way.

Hugs, love
Gerri & Makaylah

Adding something from my youngest sister....

Don't blame others for disappinting you.
Blame yourself for expecting too much from them.

I suppose that is something to think about. If we don't expect anything from them, they can't disappoint us.

My problem with that is that I think you "should" be able to expect more out of your family and close friends. My husband tells me "no, that they are all just human". It just hurts when family lets you down.

Hugs.
Possi

first, know that we all know exactly what you are dealing with and that you can always come here and vent about it to an understanding crowd

i wish there were some magic formula, but its tricky. on the one hand, it would be so easy to just write them off. i do try to make a point of not spending time, communicating with, anyone who is not good for me. but if they are family and we love them, that's not so simple.

though my family hasn't always understood why i can't travel and mom has given me the pep talk, "if you just think happy thoughts......." but no one has been as mean as you describe.

its a hard decision to make, getting rid of people in our lives that are not good for us. i've done it with a few "friends", but family would be hard. i definitely wouldn't spend time with anyone who wasn't good for me. a simple time out sometimes does wonders.

i have come to not care too much what others think. and i've stopped trying to explain myself so much.

i figure so long as i have a good relationship with my husband, that's the relationship that matters the most, as he's the one i share my day to day life with. if he didn't understand, that would be intolerable for me.

focus on the people in your life that are good for you. the others will either come around and be a part of your life, or they won't, and they'll miss the company of an awesome person!

It is very tough when family and friends don't believe. I can empathize. My family, years ago told me my AS was all in my head and all I needed was a psych med.
My sister then got AS too a few years after mine and all of a sudden the apologizes started to come. My Mom always tells me people are usually clueless about disease until something happens to them. I think there is a lot of truth in that.

I still have friends who don't believe and or who don't care to listen to my struggles so I have lived and learned who I can open up to and who I need to put a fake smile on for. My closest friends are friends with autoimmune disease now. It is so nice to be able to be yourself and have that understanding. When one door closes on a friendship or family member, another one will open.

Shari

Isn't family maddening? You love them and and believe in them when they are having problems. Sometimes, when we need them to love and believe in us the most, they disappoint. Sorry. I wish I had a better answer then "grin and bear it" and continue to do what you know is right. You really can't worry about what others think about your family's health and health care. Not if you want to stay sane, anyway.

Be prepared. If you decide to put your daughter on Biologics, the questioning may start all over again. "Are sure she really has that disease?" "Isn't that drug dangerous?" "Aren't you afraid of cancer?" "Won't she be sick all the time?" My favorite was "It can't be that bad, can it?" I tried to explain that the risks of the disease were much more certain than the small risks posed by the medication. I tried to explain the reality of the side effect profile. Then I gave up. If people did not buy my rationale, so be it. It is not my job to enlighten them or make them happy with my personal decisions about my own or my children's health. The majority of the time, I just don't discuss it. I don't know if my child's mother's mother's sister (my aunt - but it lets you know how far removed she really is to my child's life when it is written like that) knows about or approves of our health care decisions. If your daughter's x-rays really showed grade 3 sacroiliitis, aggressive medical treatment is most likely in her future. She needs you to be the strong one - calmly explaining (to her and others) the treatment plan, the risks and most importantly, the benefits. You can do it. Things will get better.

My mother has suffered from ReA for 50 years, my sister has suffered from USpA for 15 years, and my nephew has suffered from AS for 12 years, so all of my family knows the seriousness of SpA. I guess I'm lucky in an unlucky sort of way. I'd rather my family didn't understand what SpA entails and have them healthy. But if family can't empathize, they should at least be able to sympathize. See if you can get some literature about AS into their hands. The SAA and NASS have some good info.

--Greg

Big hugs for this. You have to try to shake off their ignorance, live your life and take care of your kids. You will manage this because you are one of the strongest people here. Keep on plugging along. You can do it.

I'm not sure myself of what my mom understands about it, but she will understand more when we take a cruise together this fall. She sort of understands, but not completely, because she has been healthier than me for the last 10 yrs. And my husband alternates between being thoughtful and kind and wishing he could take my pain on him (really said that! Sweetie!), then makes an offhand comment that I'm 'munchausening myself' if I share news from the internet about whatever ails me. Fortunately, that is a rarity. But I don't share all the tidbits I read on here or in general, health-wise.

So keep on going, you'll make it...in YOUR style, not theirs.