Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Need some emotional support

Marna, I just want to let you know that your in my thoughts and prayers... I know how hard it is to be a way from someone you love. My hubby was a long haul truck driver when we first met, I couldn't stand being a way from him for two weeks at a time and then only getting two days together.

Your mom's comment reminds me of something my mom would say. It's so hard when our parents are not supportive. We by human nature I think tend to look to our parents to support us / be their for us and when they say things like that it cruches us. Some times I just wish they could walk in our shoes for a few days to understand what we go thru.

Kim

Marna,
HI. Only have time to read a few posts. But you have experienced the reason so many of us depend on our family here for emotional support, as well as the "science" to understand why we feel rotten and how to respond to this disease.
This disease, has made me "grow up" realizing that it really is non of my business what people think about my helath, so let them know "thanks but no thanks".
We have to use tough love more than many other groups..

Well put Ankush!

Hello Marni,

Sorry to hear your mothers comments.. we look to family for comfort and support and some times that is not what we receive. Topics as this have come up often here, more often than I care to think. My only suggestion is to educate your family... information from here or other locations... posts from others here. But your family will have to be open to learning as well.

Unfortunately no easy solution... but understandable why the comments hurt.

Best to you and come here for the support if you can not find it elsewhere at this time. You are not alone.

Tim

Bless you, your children, your faraway spouse and the cane you walk with! You know as well as any of us that this ugly disease we share is real. It is painful and unpredictable. It sounds like perhaps you have a complex history with your illness and your family, but I would like you to remember that despite the lack of support you are receiving from your mom, you are not alone! It has been my experience (mom,grandma) that people who do not have to deal with disease, pain, depression and illness themselves have a more difficult time having empathy for those who do. However, to have a lack of compassion is just selfish. I would suspect that your mom may be in denial not perhaps for a lack of acceptance, but more as a coping skill . If you were deformed and crippled she could easily explain it, but because we are dealing with an invisible monster, it must be unreal. Those who do not experience the agony of AS cannot be expected to relate to it. I know. My daughter was dx'd long before me, but until mine manifested and I had my first true AS flare, I couldn't have known. You are not trying to cope with your life, you ARE succeeding or you wouldn't be here on this site with us today! Continue to be strong and continue believing that you know the truth. Walk softly and carry a big cane!!!!

Lovingly, mamallama

Marna,
sorry to hear about all this. it sounds like you can use a hug.. consider this a big hug from me.. I too have some people in my life that don't totally understand, and they may never.. Most of them that did not before now have a much better understanding of how it can damage your body since my surgery.. I wish you the best.. I hope you can hold your husband tight soon..

I'm so sorry! The fact that your mother is non supportive must be so very difficult! You have every right to be upset. Happy Anniversary too! You could have a nice dinner with your kids! Rent a fun movie and set up a living room floor picnic! Maybe that would help! Have you tried to talk to your mom on a serious note and tell her how you feel? I'm sorry! I can't imagine... I wish you a good day and hope you can bandage some sores caused by your mom. If I could also say, maybe your mom makes those comments because she can't handle seeing you in pain and the cane would be to much for her. She can't help you, so maybe an out of sight out of mind is her coping mechanism if this makes sense I'm not supporting her actions but this could quite possibly just be about her and not you. I don't know but keep this in mind! That's what it sounds like to me! Good luck hun!

Wow, family members can really be in denial and be so insensitive. I think your response back was brilliant. I hope you are feeling better now after some time, and hope you get to celebrate with your husband soon...
Jan

Oh Marna, this kind of ignorance really upsets me
Our family is the one place we go to find support and understanding and many times it turns out to be our biggest wall. Many here have had similar experiences. This is why kickas is so important. When we find ourselves at the bottom of the pit, there is someone here to pick us up. I do hope there is a way you can educate your family about AS. Bring them here and let them read, but they must be open to learn, and understand.

Cindy