Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I was feeling sad

Yesterday my sister emailed me and I told her that I had gotten a cane to help w/ my stairs, etc. She messaged me back and told me that she thinks I'm taking this AS thing pretty hard and that she's worried about me.

She doesn't like the idea of support groups or really talking about it b/c she states "I can’t worry about it I take the meds and do small things to help, but I won’t let it change my daily life. I do the exercises (at least once a month). I watch what I eat. I was doing the injections of Enbrel to prevent future damage. For me, that’s enough. I’m used to the aches and pains. I’m used to the side effects of the medications, I don’t like them but I can handle it. I have already lived with it for 5 long years! We all have different ways to cope I guess. I just feel like, if it wasn’t AS, it would be ovarian cancer or breast cancer or any of the other diseases that our family is prone to. It will not slow me down. If I have to choose between obsessing now and living normally, I choose quality of life now. And when I read the stuff online I was obsessing. I know what having AS can do to my body. But for me, the more I read the more I attributed everything in my life to AS and I can’t live like that."

I wasn't really sure what to think. I wasn't sure if she thought that I was blowing this out of proportion, being a hypochondriac, or imagining things. I couldn't even grasp how mentioning my cane would make her think that I'm "taking this AS thing hard" or mentioning Kick AS would infer that I'm obsessing or associating everything in my life to AS. I explained to her that we are two different types of “feelers”. I’ve always been a campaigner and I’ve never been known to keep my mouth shut about something I feel passionately about. I told her that I don’t want to be the do nothing type. I want to know everything there is to know about AS, every medicine, option, side effect, and symptom. I never want to be caught off guard. AS is not going away (at least in the foreseeable future) and I want to be ready for anything. I want to do what I can now, to prevent my later years from being miserable. I want to know about all of the research, new developments, and new medications so that I know what my personal options are.

I guess I just felt sad. I had to justify myself to my best friend. Explain to her that I refuse to let AS take over my life. If I can learn something now that will help me in the future, darn right I’m doing it! I guess I just felt sad. I’ve only known I have this for a couple months now, and I think I’m doing pretty good! The new meds, yeah, they suck. They’ve been the biggest adjustment for me, but IDK, I don’t think I’m taking it that ‘hard’ at all.

Ahhh well. Not even sure why I’m upset. Just thought that she could remember what it was like for her when she was my age and just learning about AS. She was just wreck when it all began for her.

Ick. That yuck-tastic stomach feeling has come back. Best get my mind off of it and get busy at my desk!

Thanks for letting me vent!

Ashley,
I think I understood your sister was DX 5 years ago and you just recently. I am like you.. I need to know and investigate and find out as much information as I can about anything that affects me,I like to talk to folks about their experiences and network to find out as much as I can be it a health issue, car purchase ect..I think we all have our own way of coping with things and maybe her way is on a more personal/private level than yours...

Hi Ashley! I like the idea of networking with people with similar conditions. You can learn a lot from this site. I have. I love my doctor but I have a limited amount of time to talk to her in one given appointment. I think if I learn as much as I can then I will answer some things for myself and ask her the really difficult questions. I really enjoy the posts people put up about the latest research. I think you made a great decision coming here.

Hi Ashley,

I think there's different ways of coping with this disease, or problems in general. Personally, I like knowing that there are people who know what I'm going through and I can turn to them for advice or just someone that will listen when my family is tired of hearing me complain.

Don't feel bad about using a cane if you have trouble walking. It took me a few months to get the courage to start using a cane on bad days because people were telling me it would look bad. IMHO, hobbling around looks worse than using a cane.

There's a lot of information to digest on this site and a lot of people willing to help. Hopefully you can find something that helps you feel better.

Jeff

Thanks guys. I know everyone copes differently. I am so proud and happy to have found this group and I can only hope that i'm not annoying ya'll yet

I suppose that no matter where you turn someone will have a difference of opinion, guess I just didn't expect it from my sissy. Moving on and forward

Hi Ashley, I think that sometimes our loved ones are so afraid of losing us in one way or another that they are in denial, you just keep doing what works for you and if discussing it with certain people causes strain on the relationship, I would draw my support elsewhere, like here... I'm so glad that you found this place and you're a great addition to our community...and of course, you're not getting on our nerves...

I know what you mean, I would have been upset too. Some people just don't get the whole support group thing. Others, like me, have benefitted so much that it is hard to understand why anyone would avoid them! People in our families sometimes just want to make it better for us, but it is hard for them to put in the time to really just hear and be there. It sounds like you are finding your way with grace, and my heart goes out to you.
Jan

My son and my oldest daughter thinks I think to much about this lovely disease. My younger daughter who has had and has chronic illnesses thinks I am doing great. She tells me the support groups and learning is the greatest gift the internet can give. So my advice is listen to the ones who have been there and want to help themselves. My other two children mean well but they don't know and I pray never will.
Do what helps you and I know this sounds selfish and let them worry about themselves.

Hi AshleyAnne,

Hey, I can totally understand why you are upset. As you said, she's your best friend, and it has to be upsetting to learn that she holds such an entirely different opinion toward something you have found to be very helpful, and not only that, but that she almost seems a bit disdainful of KA all the way to the point where she seems to be trying to change your opinion so that you'll stop visiting. That is a pretty big thing to deal with, and I'd say it's to be expected that you would find this upsetting.

While it does sound like the two of you have very different philosophical approaches to how you both intend to deal with the same disease, it shouldn't mean that you both can't adhere to your beliefs without negatively impacting the other. I got the sense from what she wrote to you that she does feel--at least a little bit, and maybe subconsciously at that--as if your decision to become active at KA is a personal affront to her and that she almost feels let down by this move. I definitely don't think she has strong feelings about that, and I don't sense that it will be any kind of longterm problem if the two of you are as close as it seems, but it could very well be something that the two of you are going to have to work out in the short-term. It's probably best if you don't hit her with lots of "the folks at KA said this" or "I read this at KA" for the immediate future, as that kind of thing might play into her negative feelings about the site (and support groups in general) and serve to validate her feelings about such groups. It could very well be that she is expressing these negative emotions about support groups, especially KA, because she fears that in some ways she will "lose" you to the group and that you won't be there for her as much as you were in the past. Or, in a similar vein, that whereas she once thought you both felt the same way about your AS and how to attack it, she now feels you are declaring your independence from her worldview toward AS and establishing your own personal plan of attack that might not include her as much as it once did. You know your sister best--do those kind of feelings sound like ones she might be going through right now? If so, it's easy to understand her fears, as well, and understand why she might seem so completely resistant to KA and anything it might have to offer her. If that's the case, all you can do is let time pass and give her some room to sort out her conflicting feelings. I mean, I can't believe that any person with AS could not see SOME sort of positive to be gained from a site like KA; at the very least, it is the best way to keep up on new meds and new treatment regimens.

Now, I do realize that because I just "met" you and have never met your sister, my remarks could be TOTALLY off-base! If that's the case, then I fully expect you to simply ignore them for what they were--a well-meaning attempt to try to help you sort out what your sister's words and actions mean to you as you kind of take the KA plunge. Trust me, it won't be the first time my words here have been ignored--and rightly so!--nor will it be the last. You don't sit around writing long, verbose posts without having a few completely miss the mark along the way, let me tell ya!

Best of luck,

Brad

my sister is 4 years younger than me and we have always been very close even though we have lived in different states for 10 years now and have only seen each other maybe 3 or 4 times in that time frame, we still talk on the phone a lot. and like you, she was the one i was closest too, sometimes i felt like we could read one another's minds. but people grow up and evolve and though we don't always see eye to eye now, we still have a lot in common, and we'll always have our common history.

but i think i understand how you feel. since you are sisters and you both share this disease, you probably feel that she is the one that you should be able to share this with more than with anyone, the one that should be able to understand you completely......that's probably how i would feel.

however, just because that is not the case, it doesn't mean you can't be close and it doesn't mean that she can't cope with the way that is best for her and it doesn't mean you can't cope with the way that is best for you.

your coping strategy sounds like mine. and your sister's sounds more like my mother's. my mother thinks i am "obsessed" with it all because i work so hard at staying as healthy as i can and work so hard at minimizing my pain the best i can and work so hard at finding a doc to dx me. when i try to tell her that i'm not obsessed, that i'm not worried and stressed about it all the time, its just that "the better patient i am, the less pain i have, and the better i can live my life". but her approach and my approach is different. she thinks one should be quiet and stoic and suffer in silence like a good Victorian era woman would do. i think "the heck with that! people want to know how i'm doing, i'm going to be completely frank about it, and if they don't like it, they'll learn to stop asking."

i think its perfectly natural that you want to share this with her 100%.
but just like my husband can't satisfy all of my needs and i need other friends too for emotional support, i think it might be that way for you and your sister. hubby is my best friend and he is the most important person in my life but i still need other friends and i still need to be here.

sue