Spondylitis Association of America Forums General Discussion Young Adults - The 20-Something Club When nobody knows...

I was diagnosed with AS about two years ago but I have had pain since the age of 12. I am now 21. By the time I was diagnosed, my hips were already completely fused. I had both hips replaced almost a year ago.

Even though my parents watched as my AS progressed, eventually to fused hips, they didn't and still don't understand the pain I have been through, they still think I made the pain up just to get attention. My sister didn't even realize that even today I have chronic pain. When I told her, she asked if I even knew what "chronic" pain is.

I have talked to a counselor about this, and I realized I am very angry because they don't understand. It makes me feel even more alone. My counselor suggested that I tell my family how I feel, tell them the pain I have been through, and the pain I still have. I don't think they will understand.

I have decided that I am going to tell my dad and stepmom. Even if they don't understand I know they won't think I am trying to get pity. I don't want pity, I want someone to understand.

Is anyone else struggling with this problem? If so, I would love to hear what you have done about it, or what you have learned. I am still struggling with what I should do.

I know what you mean but I don't have any great answers sorry. I'm lucky that my immediate family try to understand (husband, mother, sister and a father in law who has had pain every day for 20 years since a car accident). But others just don't seem to get it.

I'm still struggling with this with other people though. One of my closest friends - who I've known since I was 12 - listened when I carefully explained about the disease, said "that's no good" in a sympathetic voice, and then said "but we all get aches and pains when we get older". I felt hurt and angry.

I had better luck with my manager. I set aside time to meet with her, took a couple of pages about AS from this website where I'd highlighted bits that were particularly relevant for me and talked her through it, with her asking questions to clarify. She did take it seriously, maybe because I was very calm and factual, maybe because I had authorative material with me, and maybe just because of who she was. But I have been more casual telling other people so maybe that's the problem?

Thank goodness for this forum where people do understand. Hopefully someone else will have better tips?


.

Shirley,
Thank you for replying.
I am glad that your immediate family try to understand. I feel like mine doesn't. Anytime I complain about my pain (which is not often) they just roll their eyes and brush it off. Outside of my immediate family, I am just "sick" they don't understand any of what I have been through or what I go through on a daily basis.

Unless you've been through/lived something, you're not really going to understand it.

AS is full of life lessons!

Becca, I am so sorry you do not have family support. Having AS and a daughter with it, I cannot imagine what it must be like for you. Would your parents be willing to accompany you to your next MD appt to get abetter understanding? Otherwise you need to surround yourself with people who do understand. We are all here for you!
Mary

Chemman and Mary, thank you for replying.

My mom has went to every doctor appointment I have ever had. When I went to many doctors when I first started having pain, the doctors didn't believe I was in pain because they could not find anything wrong with me. So why would my mom believe me if the doctors said that there was no reason for me to be in pain. When i went to the doctors more recently, after my hips were already fused, pain was not really discussed with the doctors.

I don't know anyone in person that has AS or anything similar to it. Nobody i know really understands.
I really appreciate being able to come on this forum and talk to people who do understand.

I am so sorry to hear that your family is having a difficult time believing you. Fortunately I have been blessed with a very supportive family. They may not completely understand what I am going through, as they are not living in my shoes, but they do make every effort. My mother-in-law has a hard time understanding, though, and has made comments to my hubby about how I just need to push through this, blah, blah, blah. However, I try not to take her comments to heart, as she is not the one living my life. I am doing the best that I can...working, raising 3 children, dealing with this disease, etc.

Perhaps bring your mom with you to an appt with the counselor, and that way you can talk to her about this in a safe environment, with your counselor being there as your advocate. You definitely need to have an open dialogue with your parents/family about this, otherwise it will continue brewing, and you will grow more and more bitter about it.

The other thing you can do is print out literature about AS to have them read. Perhaps they do not know enough about the disease and how pain is a large part of it. Maybe by reading about it, they will become more understanding of what you are going through. Or at your next rheumy appt, have your mom come along and bring up the issue of pain with the rheumy. Perhaps if she hears it from the rheumy herself, she will gain a better understanding.

Again, I am sorry you feel as if you are alone in this, as far as your family is concerned. I hope that one day they are able to empathize with you and truly believe that you are in pain. I think it can sometimes be difficult for others to understand, especially when they see someone who is young and should be in the prime of their life, suffering from chronic pain. I know I have several older friends/co-workers who say, "oh, you are so young," or "what until you are older," or "you don't even know what pain is until you are my age," etc, etc, etc. It's like unless you are 50+, you cannot possibly know what pain is. What they do not understand is that, yes, I am 29 (will be turning 30 in 11 days) but I feel as if I am in the body of an 80-year old.

Oh my gosh, you poor thing! My doctors thought I was making my pain up and that was a blow...can't imagine what it would feel like if it was my own family!

This is common, unfortunately. Before I was diagnosed I was in severe pain for 3 years. All my friends, except one, thought it was all in my mind, and I was getting people (including doctors) telling me left and right I should take antidepressants because it was "all in my head" (usually a little more tactfully but the meaning was clear), or sending me articles or books about back pain being psychosomatic, or telling me all I needed was to do yoga, or a good massage, etc. Even my partner for 10 years blamed me for not being able to basically "push through the pain so it goes away like that time when they pulled their back or when John had his Achilles operation and was up and about in a couple of weeks", and eventually left me when I got to the point of being mostly bedridden. When I eventually was diagnosed, it was at least some (hollow) kind of vindication. I am in much better shape now because of treatment.

There is unfortunately no way of explaining chronic pain to someone who hasn't been through it. It just doesn't compute for them. In the end, it really isn't going to help to keep trying to talk to people about pain, and in my experience talking about it actually makes it worse. Also, understandably it is no fun for others to hear about it constantly. For these reasons, I mostly try to just shut up about it.

When I do feel the need to vent, I find a support group like this to be the best venue for it. Here people understand, whereas in the world outside, I would mostly be wasting my breath.

Seekonk, I too have realized that talking to people about the pain doesn't do any good. It is easier to just shut up about it most of the time. It actually hurts less to not say anything about the pain than to say something ang get the eye roll look and "so what, you always have pain."

My husband has had this problem for a very long time. Everyone treated him like he was just a drug addict until the diagnosis. And the pain center doctor still looks at him that way and he isn't even on any narcotic pain meds. Obviously your family has not done their homework on what this disease does to people. My husband in all honest is still expecting me to leave him because of the pain we can't be intimate, he is irritable, and can't be of much help with our 3 children. But I don't care about those things. I love him for who he his beneath the pain. And I'll be with him and take care of him until one of us is gone. I love him in this life and beyond. If someone doesn't want to understand what you're going through then they never will. You were diagnosed at such a young age and your parent didn't bother to find out what what happening to your body? Seems strange to me....my daughter is 6 and if she were to be diagnosed with this or anything else I would do my research so I knew what she was suffering from...what to ask her doctors ect. My advice...surround yourself with people who care about you and truely believe you when you say you're hurting and find yourself a darn good doctor. I'm so sorry for your trouble. my heart goes out to you.

My dad thinks my AS is caused by drinking too much pop. lol! I feel you!

StandByYourMan, Thank you for taking the time to post, and thank you for being so kind.
Your family, especially your husband, are very lucky to have you as a mother/wife. It is hard to find people who want to understand the pain we go through every day. I find it beautiful that you love him dispite all his pain and that you don't turn him away because of it. You are exactly what he needs right now.

I was taken to several different doctors when the pain got really bad, but I feel like my parents gave up when the doctors couldn't find answers.
The thing that upsets me the most is that just a few years ago I was going through some papers from when i had first been to the doctors and I found a paper with my dad's handwriting that said "anklylosing spondylitis." It must have been mention by a doctor, or he had found info about it online, so why wasn't that investigated further? It leaves me to wonder "what if?"

Kay, that is so funny but sad at the same time!