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

Up until know a lot of my social life has revolved around going out to bars, restaurants and the like. Often at least a half an hour subway ride and a good amount of walking. I like in a not hip area of Brooklyn NY.

Since having a flare up last May. I have been in hiding. I am now feeling better but not amazing. So I want to go out and have fun and i have a feeling i would start feeling much better if I was distracted. Since I am in that inbetween area where i don't want to over do it going out. I also can't really drink because of all the meds. My friends are ok with going out with me on weekdays but not weekends. Which is sort of the opposite of what would be good.

How to you guys deal with going out with friends? And rebuild your social life after a flare?

I actually mostly have friends over to my house. If we do go out, it's usually to a cafe or restaurant. I definitely live in a very different area though- suburban upper middle class Texas. We drive ourselves everywhere and everything I want or need is within a five mile radius, besides my 15 minute drive to school, 30 minute drive to rheumy and 45 min drive to work.

I have a group of friends who mostly hang out at bars, but I really stopped hanging out with them much in a group setting and try to have them over one or two at a time instead. I don't enjoy being the one stonecold sober person at a bar.

This is an interesting topic. In my early 20's I didn’t know I had AS or any other autoimmune issues. I would cancel a lot of plans to go out with friends because after going to school all day and possibly working I was so exhausted and in pain that I would cancel. They all thought I was a big flake and I started to feel like one! They just had no idea about how I was feeling. The only thing that sounded good was a bath, pain killers and a good book. So I had to learn how to pace myself. If I was going to school and working I would tell my friends that I could go out another day instead.
Now my husband and I have a very strict policy that we do not go out during the week unless it is a very special reason. We will go out with friends for dinner at a reasonable time and make sure that we are home for our normal bed time. I know this sounds so elementary school to some but I have had to get really strict about it. I am much happier and healthier because of it. Just be honest with your friends and tell them what is going on. Maybe you guys could work something out. Even if its getting together at your place for a movie one night or having coffee at a local coffee house.

We also have friends that like going to clubs but we just do different things with them. They go with other people now and everyone is ok with it!

I know it can be tough but it is important to set boundaries that you don’t feel limit you. This disease does that enough. Its just learning how to work around it and still have FUN!
Good luck

Outlier, you are on every med under the sun. Are you sure the Methotrexate and Sulfasalazine are strictly necessary. These are not currently recommended for axial AS by the ASAS International Society treatment guidelines because there is no evidence that they help for AS, and you are already on Humira which should protect your eyes and keep your Crohn's under control. If your Humira isn't doing that on its own, you might need a more frequent injection schedule. If you could stop or reduce one or both of the DMARDs, you would be doing your liver a favor and may have more leeway with having a drink with friends.

see my issue with the whole setting perimeters for my body and what i can and cannot do is that i do not want to have to do these things. I know that realistically i should be doing that for my well being and so i can actually function, but i dont think its fair! it sucks! i want to be able to go and get drunk and act a fool with my friends like i used to but because of this dumb disease i no longer can. it freaking frustrates me to no end! It frustrates me when i sit here and read how most people with AS have to do these things just to be able to do the normal things people do. and knowing that this is what my future holds! a ton of perimeters and things im gonna have to get used to, just to function. I used to be tons of fun and had a lot of fun, but those days are gone now. that just makes me mad! because now i look back at all the times i could've taken advantage of actually being able to do things with regret. now i have to live the rest of my life with all these restraints and all these rules i have to follow for my body to even feel remotely normal.

ugh! it just pisses me off!

i know im bitching, but i am in one of my moods right now! haha.

sorry.

Izzy, we've all been there. I'm sure we all still have those moments too. I've only been drunk less than a handful of times and don't miss drunkenness especially, but for some reason I have been unable to have more than 2 servings of alcohol in a 4+ hour period without vomiting, for about a year. And for the last 4 months or so, even a single very very small serving of alcohol makes me wanna die the next day- enormous GI flare as well as a flare of joint pain. I think in my case this has more to do with whatever is going on with my GI system. Chronic Pancreatitis is currently the most likely answer. If it is CP, that will mean no alcohol, ever. It sucks. It's not fair, at all. But cutting out alcohol certainly beats feeling like I'm going to die. It certainly also beats further killing my pancreas and thus actually dying. My husband and I used to go to our favorite little Mexican restaurant for fajitas and margaritas every Friday night. I haven't been able to eat fajitas or drink margaritas in months and months. But y'know what? A virgin pina colada and some fish or shrimp is wonderfully delicious too.

These are crappy decisions we have to make. It's not fair at all. We have to make decisions our grandparents may have not ever even had to make, depending on their health in old age. But, if a decision improves my quality of life, as is the case with getting a full night's sleep, not drinking, not pushing my body further than I should... I still pine for the days of yore but try to enjoy the fact that I've decreased some of my pain.

No need to apologize for these feelings though. We all have 'em. I just mostly internalize them or spew them out on my friends only livejournal (yes, lj is still around... crazy, right?). That or I have some emotional moment when I'm alone with my mom or husband and it comes out in a bitter crying jag. No fun.

see i used to enjoy drinking and was quite good at it(lol) but because of this disease i haven't been able to actually go out and do it. i haven't gotten drunk in over a year now(not counting the few glasses of champagne and wine i had for my bday/nye). i like drinking, with friends not alone(i don't get how people enjoy drinking alone to be honest) but yeah for the most part i would drink for fun and wouldn't over do it. i was very aware of my limits but now with this disease and all of drugs im gonna have to be taking for the rest of my life, im sure i would prefer the results i get from taking the pills instead of not and being able to drink. i not gonna be like "oh f my disease, im gonna go get sh*t faced!" just because i miss getting drunk with friends. id rather be able to take my meds and be functioning. its something that i have to give up and I'm ok with that. it still frustrates me though.

I'm sorry that you had to give up your fun little tradition of going to eat at a Mexican restaurant. fajitas and margaritas are things any human being should be able to eat without consequence. that sucks! but i guess it doesn't suck as bad as what you would have to go through if you did choose to consume them.

thats what pisses me off, we should be able to not have to go through this! we shouldn't have to sit here and plan out exactly what we can and cant do in order to be able to avoid as much pain afterwards.

and as for the spewing of thoughts and rantings, i mainly do that on tumblr! great place. i have a livejournal but i use it mainly to comment in communities. i just get on these moods around the same time every night if i cant sleep and it drives me nuts. i sit there and let my mind just go off for hours, it usually just ends up going in circles though. but i guess thats just something attributed to the disease because it sure does play a number on your head.

Izzy, I was doing the same last night. My spine and SI were killing me on my back, my pelvis was like a jackhammer pounding away laying on my stomach. I haven't been able to sleep on my side since I was about 8. My husband was late coming to bed, and I just laid there for hours with my eyes open and my mind running a million miles an hour over all manner of depressing thoughts. It sucks. I'm definitely flaring.

Thankfully I had a rheumy appointment today, and pending a negative TB test result, I'll have my very first Humira injection on Wednesday. He also gave me a medrol pack to try to halt this flare for my trip to Scotland on Saturday. Between my big adventure and looking forward to new, probably more helpful meds, my optimism is raring back up. Hope some positive turn finds you too!

Wow...reading all this is exactly me! I am 29 and this started when I was 15..for half of my life I have been planning what I can and can not do! It is so annoying!!! I want to wake up on a weekend and go shopping for the day and then out with friends at night and just be a normal person--but that's in my mind because physically I can never do a day like that. Always have to rest in the day and then go out at night and still with restrictions and limitations with a good chance of "paying for it" for days! Sooo frustrating! I hate that other people feel like this, but selfishlessly kind of glad I found a place where people can EXACTLY relate!!!

It's interesting looking back at this thread after so long. My outlook on things has changed a lot in the last 1.5 years. I guess I'm just more at peace with the changes my health requires me to make.

The Humira I was so looking forward to got delayed by a positive TB test, and isoniazid treatment. It was worth the wait. For about 6 months, Humira worked so well for me. I only wish it had lasted longer. We've spent the last year trying to find something that works as well again. I guess maybe I'm more at peace because I know a good degree of relief is even possible. I've experienced it. I know it's just a matter of finding the right mix of medication, exercise, and whatnot again. I can let myself have hope for relief now, and I guess that makes giving some things up a little easier.

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.