Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Attractiveness with AS

Having an invisible and uncommon illness with a weird name has never been easy. The tiredness and depression caused from fighting chronic pain on a daily basis is very frustrating and makes employment and relationships impossible.

Partly due to performance and partly due to a lack of attractiveness and empathy from the relation or employer. You look ok. They feel ok. Therefore they cannot understand why you are so tired and cynical. If they can do something then you should be able to do something. Short of getting a tattoo on your forehead there is little to do with a rarely known invisible illness to show someone what it is like.

Anyway who cares ? We only see the world from our own experience so it doesn’t matter what you have if it doesn’t benefit them.

At an early age this problem molds your outlook. And with this you continue through life expected to compete with others who don’t have an illness and watch as they are rewarded for it. Unless it is a potentially fatal well known illness, especially if overcome, which is viewed as heroic and attractive. As long as there is no severe disfigurement or impairment of course. A little scar does no harm to attractiveness.

If you are programmed with genetics that determine your attraction then what is the point ? Some will be lonely and have low self esteem but some won’t.
A life time of rejection and frustration is hard to turn around with medicine or psychiatric analysis. Anyway, you are waking up the next day tired and in pain no matter how you rethink things. Pretty tricky to rethink that. Also the fact that people find your struggle unattractive is a fact. It’s not opinion it’s a fact. Its survival and its how we are programmed.

To be tired, depressed and no fun is unattractive.
Some are born to sweet delight. Some are born to endless night (William Blake).

Thanks.

you sound really down, and your 1st post too

what can I say....? my wife loves me and has been with me since the onset of this disease. Life is what you choose to make of it bro/sis.You can lie down to it, and accept defeat, or you can go out there and kick some AS

keep well and welcome to the forum

Hi. Thanks, you are right. I'm just having a badAS day which is one of the reasons I signed up to kickas. I wanted to get reactions on how people found AS affected their attractiveness/esteem and reactions from romantic partners but it did turn into a depressed rant.
I think possibly getting it at 10 yrs old affected outlook and body image growing up. Its perhaps different getting illness after meeting someone, or maybe not, but you are right that outlook and the way you deal with it are what matters.
Thanks.
PA

The constant fight against chronic pain does not make relationships and employment impossible: only more difficult. I was lucky not to get AS until I was 30, but that was 24 years ago. My nephew got AS as a young teenager, but he's doing fine on Humira now and has a good life with children of his own now.

Take time to find out how others cope, and this forum is a good way. I hope you take time to read the posts and to ask questions. We welcome you here.

I just read your 2nd post. Thankfully, I had already developed good self esteem and had married before I got AS. I can't imagine getting it at such a young age. What are some of the specific roadbloacks that you face?

--Greg

I would say that I am a confident guy and I don't have any worries at all about my looks, esteem or anything like that but I do feel like AS does impact my social life quite a bit. I enjoy socializing and meeting new people but I often feel like my AS restricts me from being in an environment that encourages this at this point in my life. I am 20 and still life at home while most of my friends from school live in dorms or flats with many people their own age. I have found it very difficult to even study part time at university and I don't have a part time job at the moment. I often wake up late in the morning and sleep in the afternoons due to the pain and fatigue. I've had a tough few years and my reaction has been to isolate myself a little bit. For some reason that is just how I've dealt with it and in reflection it is probably not the best way.

It is more difficult but as Gbash said, certainly not impossible. I don't mention my struggles with anyone outside of one person inside my family. Nobody knows that I have this problem except a few of my close friends. Therefore nobody treats me any different to anyone else. I have a great sense of humor around my friends and generally love being the guy who makes others laugh. I love music and sport and I'm just a normal guy and nobody sees me as different in any way. I like this. I don't think there is any reason to suggest you can't fit in just like everybody else. However, I do think that if you get in a relationship you will have to tell the person you are with at some point. If they can't handle your illness then that is their problem. One day there will be someone who will.

It is harder to compete with others who are healthy in terms of work etc. As Les Brown says, I wake up every morning and tell myself, "No matter how hard it is or how hard it gets, I am going to get through this. I am going to make it."

Seb

I think in life your greatest strength usually is your greatest weakness.
Of course AS has caused me over the years huge levels of pain, fatigue, frustration, discomfort, depression and a change in the way some parts of my body look, work and feel.
However, it's also made me strong and resilient. Yes the temptation was huge to just curl up in a ball and give up but I didn't, and no one here did, and we now know that if we can take on AS we can take on anything.
AS has helped me sort out my priorities. Ever seen people make a fuss over the smallest things ? I generally think to myself "They clearly don't have AS, I'd never have the energy for this !!". Fair enough we do have less energy than "normal" people, but for that reason I pay a lot of attention to how I use up that energy : on people I love, and things I enjoy (and work of course, that old nugget...), not on bitching, creating problems or anything like that.
AS being an invisible disease makes it difficult as well, because people don't understand what you're going through because you "look healthy", and they don't help you out, or leave you their seat on the bus and so on... However, remember this gives us the choice of "acting normal" when we feel like it... Dress up, slap on make-up and a big smile and pretend you're just like everybody else. And you can do this with an employer, in a job interview, with friends, with a date... Someone with a visible disease has not got that luxury, and the first thing people will see is the wheelchair, the cane, etc...
As for "employment and relationship being impossible", I've had AS since my teens, and I now have a good job and have been in a 7 year relationship with a fantastic man so I strongly disagree with you. My boss and colleagues (but for one) don't know I've got AS, as it's none of their business. If I limp a bit some time and get asked why, I just brush off the question, smile and say something like "oh well, not getting any younger you know...". As for my partner, I let him know quite early in the relationship, when things started looking serious, and he didn't run a mile, which was another clue that he was the one. Sure some people will not want to go out with some one that suffers from a condition, but at least it'll sort the wheat from the chaff. And if I may say so myself, my partner finds me very attractive (and so do I on a good hair day :-) ) so attractiveness and AS ? Hell yeah !!
As for "people finding your struggle unattractive", I think a lot of people can be admirative of people that face difficulties with dignity. I asked my partner recently which qualities he liked best about me and his answer was how strong and independent I am. And I know for a fact those 2 things are a direct result of living the past 12 years with AS.
So, chin up, be strong, pick yourself up and dust yourself off, you can lead a very happy life even with AS !!
All the best,
Marion

This was a fantastic read Marion! You have a great outlook and this was an inspiring piece. I'm sure people here will appreciate that!

Thanks for the responses. I guess its attitude to the problem that is attractive and not the problem. Having good friends and a good environment is very helpful so you probably have to work hard to find the right people, especially with intimate relationships.
I think like a lot of people I grew up in a school where sporting prowess was commended and although my mind was sporty my body restricted it which caused an early sense of poor self image. I think bitterness is very destructive and helps nothing but I do sometimes struggle turning that off.
Great to get positive responses though.
PA

Goodness. AS has neer interfered with my fabulous attraction to the divine female..........they all adore me....................don't you girls..........!!!!!


Cheer up get on with your life. Any unatractivenes lies in deep foreboding thought...............think fab...........I do.............but then........I am...............err

Hey There,

It certainly sounds like you hit some depths while writing your original post, but have rebounded a bit. I thought I would share some of my experience with you in hopes it might help.

Unlike you, my AS came on later in life, in my late twenties. After I realized what was happening and as a single man, in my despair I felt that now I would never find anyone who would love me and want to be with me.

As it turns out, just a couple years later I met a wonderful woman, fell in love and now we're married with a beautiful baby girl. She is the most wonderful and supportive person in the world, and I know she'll be with me no matter what AS or life in general throws at me.

The funny part is that, before my illness I was obsessed with action sports, snowboard, mountain biking, climbing, etc. And I was thus always looking for a girl who was also into those things - almost exclusively. After those sports ceased to be part of my life, I stopped looking for someone who was into them and opened up myself to whomever life threw at me. If I had met my wife in my previous life, I might have missed out due to my obsession with sports. Or in my previous life I might not have met her at all!

For all that AS has taken from me (which to date is luckily just a few things) it has given to me equally. I have my wife and daughter. I have learned to be a more compassionate person.. I've learned to slow down and enjoy the little things and details in life. And I've learned to be more appreciative of the things I DO have and the blessed existence I've have lived and currently am living.

I'm not sure if this helps or if I'm just being self-indulgent. Hopefully the former.

All the best,

Colin