Spondylitis Association of America Forums General Discussion Young Adults - The 20-Something Club struggling to fight alone

do you ever feel like life is just passing you by? that you are alone in your fight? that no one understands?

I finally got the courage to go to college this past fall. I am going back in a few weeks for the spring semester. I am trying to get out and actually live my life, but...

I am different from most young people. most people i encounter at college either look at me like i'm a freak (AS has left me unable to stand straight upright, i stand and walk kinda bent over)or they just ignore me. The few people who do actually try to talk to me i shut out mostly. i can't accept myself so how could they accept me?

Life sucks. i realize that, i just need to learn how to deal with it.

I know i am not the only one suffering, i just feel very alone in my struggle.

I don't want to fight this alone, but no one can fight this battle for me.

I'm sorry you feel so alone. I wish I had some wisdom for you other than to persevere, because things DO get better. Are you seeing a doctor to address your depression and persistent negative thoughts? Please don't put it off - it could make a world of difference although it won't help your AS or your pain. It could change your outlook on life.

No one is alone here though it can "feel" that way. You are included in our senses and our thoughts. Do they have groups at school that you are attracted to join in?

Wandering a college campus (or I'm sure a high school, middle school, etc. for those afflicted even younger) can definitely feel isolating when you suffer from a disease that makes you feel much older than your "real" age. When walking to class hurts, when you have to ask every professor for special permission to be "allowed" to leave the class more frequently than most when IBS calls, when you have to force yourself to go to the classes with graded attendance on bad days knowing that there might be even worse days later in the semester... and knowing that the vast majority of your "peers" don't understand at all... It does feel lonely. But I'll tell you what, when you finally graduate, it feels like that much more of an accomplishment. School is more challenging for us in ways that most don't understand, but if you persevere and get through it, you know just how hard you worked and that you really earned it.

I would echo Jen's suggestion to see a doctor about depression. Getting on Pristiq when I was suffering from situational depression made a world of difference for me. Though my health circumstances haven't changed, my world view has, I suppose because a chemical imbalance was corrected and my Pollyanna attitude fought back up toward the top. Having a therapist on hand that I can talk to when it all gets to be too much is also extremely helpful. I don't have to feel I'm burdening a loved one with my darker thoughts, and I don't have to put up with a loved one writing off my worries about my health because that's how they have to process their worries about my health...

but what if things don't get better? i know i have the choice to work toward changing my outlook on life, but i don't see my situation getting any better, it will only get harder and more complicated.
Back in July i quit going to counseling after four years of it. It wasn't doing me any good anymore. i was shutting down and not talking anymore.
I know i need to get help, but sometimes i just don't want to.

Counseling doesn't work for everyone - especially for depression that is organic disease, not situational, which kind of sounds like is the case with you. You can talk yourself to death but if the stuff you're talking about isn't the stuff that made you depressed it may not help much.

Antidepressants might be a life changing thing for you - the only way to find out is to see a psychiatrist. Feeling discouraged and hopeless as you are can definitely be a sign of depression and if so, is not something you can just fix by working on it or willpower etc.

ok, but antidepressants aren't going to change my life, they won't help my AS or my pain. They won't make me look normal. So, what, i'd be on them forever? i won't even treat my AS, why would i treat depression?
i avoid taking meds. i don't think antidepressants would be wise for me. they wouldn't be a quick fix. i need to learn how to deal with life, not pop a pill and hope for the best.

becca, I have struggled with lifelong depression and anxiety. I also have complex PTSD.

I have tried almost everything from medication to natural approaches and therapeutic approaches. The only thing that helped me was a cognitive-based mindfulness therapy. A scientific mindfulness, not Buddhism. There is a difference. I am not against Buddhism, but the scientific approach worked best for me.

And it does exactly what you are looking for: how to deal with life and your current situation.

The books I recommend are "The Happiness Trap" and "The Reality Slap", both by Russ Harris. He really has a gift for explaining things clearly.

This is not a quick fix, but I felt shifts and healing just from reading the books. And as I practice, my skills improve.

Even if this approach doesn't appeal to you or help you, I hope that you find something that helps. I will keep you in my thoughts.

Becca,

I can appreciate how difficult it is to live with this disease at a young age. It is hard to know what the future will bring, whether things will improve,stay the same, or worsen. But you can learn to choose how you will react to it. Maybe a different therapist or type of therapy will be more helpful. I also am not a fan of medication and carefully evaluate every drug that is prescribed to me. I do think if I was so painfully unhappy that I would think carefully about whether drugs would improve my life or not. I hope that you find what works for you, because even though this disease sucks life has so much to offer if you are open to it. Best Wishes

I do not understand your decision not to treat the AS or your depression. Can you help me understand your reasons? Thanks.

Sorry for trying to help. I guess I'm not clear on what you are looking for here.

Jen,
i am sorry that i snapped at you. i guess i don't know what i am looking for either. i shouldn't have snapped at you like that, and i am sorry.

Brenda and onlywhenilaugh,
thank you for your replies. i appreciate your kind words and suggestions.

When i went back to doctors and got dxed with AS, my hips and SI joints were already completely fused. i guess i decided not to treat the AS because i felt like most of the damage was already done. i felt like i had lived through the worst of it without treatment and it seemed to be calming down, so i chose not to pump my body full of toxins and have to possibly deal with the side effects that went with that. I guess from my point of view, the risks weren't/aren't worth the benefits in my situation.

As for the depression... well, thats just a mess. I was in counseling for 4 years, but somehow i felt like i wasn't "allowed" to have a major problem. so, i only dealt with the crap on the surface. I was ready to commit suicide and after i told my mom (and the reaction i got) i shut down, told myself that the problem was stupid and i was just being overly dramatic or something. never dealt with it.
if i seek help, that means i am admitting i do actually have a problem that needs dealt with, which if i was the only person it affected that would be fine with me, but i'm not.
stupid mess. sometimes i just want to quit. i need to deal with it. i know what i need to do, i just don't do it. it's like knowing you need to put gas in your car, but you just don't do it. you know you are going to run out of gas and the car will die, but you ignore it anyhow.

It's OK, Becca. I see you are stressed and distressed and that you know what you need to do to take care of yourself the way you deserve. I hope you will be able to find whatever it is you need to find in yourself to give you the strength to take the first steps towards a better future for yourself. Do weigh the potential risks with the potential benefits; avoiding help/treatment by only considering potential risks only hurts you, as I think you realize now.

To extend the car analogy, I don't know if you have ever actually run out of gas, but I have - on the highway. Believe me, it made me feel foolish and exposed, wasted a lot of time (mine and others'), and was a lot scarier & more dangerous than if I had simply torn myself away from my distractions and taken the few minutes to stop at one of the gas stations I drove right past that day

As someone who has clinical depression, I wanted to just chime in and offer support. I understand not wanting to be on medications, I really do. At one point I was on twelve different medications a day a felt absolutely terrible. Now I take much less and feel far better. Before I got help for my depression, I went through a very dark period, it was before I was diagnosed but I knew something was wrong (but nobody believed me yet), we had just moved towns and I was suddenly an outcast and I was just in this deep, deep chasm that I could not escape.

I ended up talking to my PCP who referred me to a therapist and started me on an antidepressant. Between both, I slowly started to improve, don't get me wrong, it's NOT a magic pill and cure all. Sure, I started to feel better, but I had problems to work through and I started cognitive behavioral therapy, which helps change your self defeating attitudes.

I'm sorry that you're going through this and I'm sure that you feel alone, but I promise you that you're not. There are people who know how you feel and understand what it's like... Please remember this.

i think talk therapy can help give you some coping mechanisms. i would strongly recommend getting on a treatment plan with medications for your AS as well as pt.
the hardest part about all ofthis for me is how itseems to affect my sense of self. My identity and what i can do and enjoy. I'm hoping to regain some if what i have lost through these. past years.
You deserve to be happy and furfilled and whilemy life may never be exactly what u wanted itto be or look like....I take pride inthe fact I'm fighting for myself with this treatment plan.
i hope you fight for yourself instead of accepting this is happening to you....i did that for years its no way to live.