Spondylitis Association of America Forums General Discussion Young Adults - The 20-Something Club Accepting your fate...

Hi all,
I've had a hard time lately dealing with my pain and accepting what is to come. I think it's been especially hard on me recently because I've been going through periods where it's not so bad. But when it comes back, it hits me like a ton of bricks. I get used to feeling like an almost normal 22 year old, them it hits me and I lose my sanity. I usually break down into a pity party for a short time, then find a way to suck it up.

It's also hard when people know what's going on. My boss and my boyfriend are good examples. They care about me, my pain and my wellbeing so it is nothing they do wrong...but sometimes I get so frustrated. I want and accept the help when I'm in pain and need it. But when I'm doing okay, they almost try to force me to accept help. They are not at fault, they cannot tell how bad or not bad the pain is that day and are only trying to help. But I don't want to feel disabled and helpless at this age. I guess it's really all in my head. I should be appreciative, but it gets old feeling like you always need help, or for others to take care of you, slow down the pace, give you a break.

My boyfriend and I love hiking and camping. Besides scheduling conflicts, my pain has also really gotten in the way. He keeps asking when we will go, and sadly my answer is when the Remicade starts helping. I feel terrible that I'm keeping him from what he loves to do, he won't really go without me. And I'm also sad that summer is almost over and we've only camped twice.

I guess this is more of a vent than a question...but here is my question:

How and when do you finally accept that this is life as we know it? That we won't always be able to do what we want and love to do? That we are not typical 20somethings and our lives need to be..modified to fit our abilities and disabilities?

I don't know that I'll ever accept it. Nor do I think accepting it means lying down and letting it kill me. Somedays this diagnosis feels like a death sentence, and some days I realize I just have to do the best I can.

Really, I'm just scared.

Hi, Emmie: I hope you don't mind my speaking up here, as I'm not in my 20's (by a long shot!). But what you expressed really struck home to me. I think the issue of "accepting our fate" affects all of us. To suddenly find that we have to deal with a new self-image of ourselves, that our dreams and passions of what we love to do and who we are is dying before our eyes.

It IS scary! I alternate between grieving for what I have lost, and struggling to find some new kind of satisfaction with my life that will fit within my new limitations. And there is always the hope and prayer that we hold inside that one of the medications we try will turn everything around and give us our lives back.

I think this a struggle that we will be dealing with for the rest of our lives - trying to find a new balance and searching for what joy we can find. Appreciating our "good" days and finding ways to survive the difficult ones. It will require us to discover new strengths inside ourselves to make it through each day.

I've been dealing with this disease for two years, and I'm still struggling with all the emotions that it brings up. I wish you and everyone else here the very best!

I don't think it is necessarily our fate to be in pain and limited in life. Lots of people find the right medication and improve to the extent where they can live normally. I haven't yet but I am aiming for that and I really refuse to entertain the notion that I won't eventually get better. I really think that, given the range of available new medications for this disease, you will hit upon the right one and be able to live normally or close to it. You just started Remicade recently. Try not to despair while you are waiting for it to work. I'm sure we're all keeping our fingers crossed for you.

I too am older than 20 but your true emotion comes through here, so I am responding in that way to you.There is a long answer and a short answer.

Here's the long 1.
In my twenties when I could not walk due to pain I hobbled. When I could not hobble, I took time from work. I used heat to get back to work/ease my pain. I kept my head up and I REFUSED to alter my course. I talked to a therapist each week. A good one.

I kept walking and working. When I could not bend my joints I forced my body to work in spite of the pain. When I could not push through the pain I cried and was scared. I found small rewards and I built upon each step to reward my accomplishment. I was uncompromising, I was mean, I was angry I was winning.

When I could not see from one eye, I worked harder and doubled my accuracy. When I really could not see from one eye, I had the cornea replaced.

When my heart went into a super fast rate I put my head in ice water or I held my breath or I took a pill and it returned to a regular rate. When it would not return to a regular rate any more, I went to the ER and then I asked a cardiac doctor to fix it. He did fix it on the 2nd try.

The incredible awfulness of this diagnosis became a personal threat. When I couldn't I did. When I couldn't I fell down and got up and sometimes I could not and I didn't. I waited until I could.

When Remicade came along I had learned to do EXACTLY what I wanted and was born to do.

Short Answer
We have incredible resources within us. Be yourself, fight as best you possibly can, reward yourself and Win.

WhiteCell, thank you for posting that. You are really an inspiration to me.

Thanks. My dad did the same for me.

Thank you all. Maybe I should've posted that on the regular forum too. I posted it here to maybe get advice from people my age dealing with the same struggles. But really, most of the older members went through it at my age, too. I'd still love to see others responses, as everyone's experiences are different.

The day I posted that, I was very down. Today, I'm okay. Most days I'm okay. I feel the rib pain coming on, but I have 2 10-hour work days ahead of me and can't let much slow me down. When I am working, I force through as you said, Whitecell. I guess it is just nighttime, when I am wiped from my long day, that it gets to me. I rarely have the time to slow down and reflect on it. So it gets bottled up and when I do have time to think about it, it hits me hard. Since my only day off is dedicated to errands, appointments, infusions and occasionally sleeping in a bit...there isn't really time for a therapist now. But I'd really like to see one in the future. Especially if the pain gets worse and the disease progresses. I know I'll need it then.

But for now, this is my therapy. Venting to strangers and learning from their experiences. So keep 'em coming!

Sounds like you have the skills to win =)

Thanks for your honesty and candor as well....

Sounds like you have the skills to win =)

Thanks for your honesty and candor as well....

Emmie, I'm the same way. The days when I'm busy and have to push through to do what I have to do are typically my cheeriest (assuming I'm capable of pushing through; if not they're my lowest days). The days when I have sizeable chunks of free time are when I get the most mopey. Of course, the days I push through so much that I hardly feel any pain (I specifically mean the adrenaline rush of working weddings) also tend to lead to a night spent wailing and carrying on from the pain of pushing myself *too much*. It's a lovely balancing act.

It's hard to look at the potential future we face. I do my best to live in today in that aspect, though worst case scenarios flit around my head anyway. We can be pleasantly surprised and abundantly grateful if and when we improve or at least do not worsen with time, and as prepared as we can be if the worst does come to fruition.