Spondylitis Association of America Forums General Discussion Young Adults - The 20-Something Club Going out, having fun, being sick, and friends

I know what you mean! I too, hate the fact that other people have to live like this, but on days when i am feeling really bad, i am glad i am not the only one.

For me, AS is a very lonely disease. No one i know understands what i go through everyday. And they especially can't understand why sometimes i am fine to shop at three different stores and other times i can hardly drag myself through one.

i'm glad this thread continues to exist. one of the hardest things of having a chronic illness in my opinion is how it changes our relationship to others and ourselves. before my AS got really bad, i was very social and always organizing happy hours, backpacking and camping trips, cycling tours, etc with my friends. then the pain and fatigue got too bad to do that, and the NSAIDs made happy hour less fun. after some straining of friendships, i'm still learning to re-work activities with friends and figure out how to do what i enjoy at a level that i can manage it.

"Getting on with life" and not dwelling on illness is important. but sometimes that narrative, imo, puts additional pressure on people facing illness because it says "not only do you have to deal with pain, fatigue, a changing body and medical bills, you also have to become an inspirational figure to others that doesn't let these real limitations stop you". when you're already in a lonely and painful place it can make you think "man, i'm not even good at being sick! let alone being well!" which i think can be dangerous.

it takes time to get to that place of acceptance. it hurts when the invitations stop coming, and the difference between what friends are doing and what one is able to do can be particularly vast in the 20's (which overlaps with the same time we're just getting diagnosed and probably don't yet have a great treatment plan worked out yet). i don't have a ton to add on dealing with it, since i'm still learning. but i think it's good to keep this thread alive as a place where we can keep working through these issues, and i can relate to everything that's been posted.

I've been sick since middle school and I had to home school through high school. I lost all my middle school friends because i was always canceling on them because of my illness. I never realized it wasn't my fault, i just can't predict when i'm going to be sick. And now when there's a time I am feeling good I don't even have friends i can do things with because my illnesses have alienated me. My family is the only people i hang out with. I just wish my body would allow me to do the things i want. Like drive a car and go to college. I can't even ride roller coasters anymore, or dance at a party.

Annie,

I never went to public school, i was always home schooled. My AS developed when i was 11 or 12. The few friends i had i lost. I literally didn't leave the house more than maybe 3-4 times a year between the time i was 14 or 15 and 17. I literally only saw the family i lived with, i had lost the rest of my family along with my friends.
Now i am 22, i get out WAY more often now and have regained my family back. I still don't really have friends, but that is my own fault, not my AS. In the past 9 months i have also learned to drive and got my drivers license. I hope to be able to go to college in the fall or next spring.
I don't know your situation, but don't let AS hold you back. While we may never have "normal" lives, we can have a life that consists of more than AS. Although it will always be there, don't let it define you. I still struggle with that, but i like to think i am winning. Slowly, but surely.

I hope this helps

bless you becca for coming back to your humanity on such a long and difficult journey. man, having that many people misunderstand the nature of your dx, and abandoning you at a low physical time of your life.

you are strong and an example to us all.

sequoia

i also want to commend all of you who continue to fight the good fight. don't give in to the disease. tho i had symptoms of it at your age, i did not seek a dx until it totally overcame me. i am so sorry you all have this extent of dx so early in your lives.

keep on i am empowered by your stories. prayers to/for all of you.

sequoia, my family and friends did not abandon me, i abandoned them. At first when i was just limping because of the pain (at about age 12-14) i stopped going out as much, i was made to feel very ashamed of myself because of a stupid little limp. When my symptoms got really bad, i barely ever left the house. I stopped going to family get-togethers and stuff. So it wasn't really them, it was me. I finally went to a family get-together after several years of not seeing these people because i had scheduled my hip replacement surguries, i was afraid what if something went wrong and i would never see my family again. So i went and they accepted me for who i was.

I am not that strong, i guess i just gave up.

just a question, who made you feel very ashamed?

it is wonderful that you made the connection after all that time. and further, that you were accepted for who you are.

i must have misread, i am glad you made the effort to form or reform the family bond. i just didn't read that the first time.

it is never too late to reconnect with those who have meaning in our lives.

blessings...

I've also dealt with this and I've personally found it very difficult. I never had a lot of friends, just a few very close ones and more "acquaintances". When I initially got my first big flare, they were supportive and tried to keep things rather normal. After awhile it just became too much, I think part of it was that I became "boring". I don't like to talk about my health much, do my friends would tell me about their adventures and I wouldn't have anything to contribute as I had just been home ill. The only friends I still have is my significant other. It helps that he's more of a homebody and doesn't want to constantly go out. On good days we will go for walks in the park or maybe take a trip to the mall. For a long time I felt very bitter about being abandoned by my friends, I would try to stay in contact, but they didn't want to just stay in our go on short trips. After awhile I realized that we were just in different points of our lives and perhaps we will reconnect someday when their lives show down, but if not, then that's ok too. I was blessed to have good friends for awhile and am truly blessed that my best friend of all (my significant other) has been consistently supportive and there for me. On another note, I find my family has become much closer since the onset of everything (with the exception of my father who isn't very understanding of what is wrong).

sequoia,

i guess i really didn't explain things right the first time. maybe i didn't want to own up to it.

my mom made me feel ashamed. Whenever we would be out in public she would ask me "are you trying not to limp?" as if i could control it. What she didn't know is i was already trying as hard as i could not to limp because i knew it embarassed her. As time went on and i couldn't stand straight anymore, her question changed to "are you trying to stand straight?" by this time i wasn't going out anymore, she would ask me nearly everyday even though i never went outside the house.