As one who grew up not understanding my mother plight, then to get the "full tour" myself I understand that people only see things in terms they understand - unless you've walked this brutal path it's not something anybody can really get their heads around - the best I've ever hoped for is to be believed that I'm doing my best... My words to them - it's truly incomprehensible pain and something I'll have to deal with for the rest of my days...I only want you to believe and trust I'm doing my best...it's not something you can possibly understand - the pressure and fatigue of living this very painful and frustrating life can be overwhelming , but I do my best to face my uncertain future.

Thank you for your advice, but I am following my doctor's orders.  If you feel that my doctor has made some mistake, I would be happy for you to accompany me to my next appt. So you can discuss this with my doctor.

I am a Christian man and have worked my faith pretty good over the years. I know that Jesus can heal me just as He did when He walked with us. I believe that he doesn't because there is a lesson in life that I have yet to learn but I feel like I am getting closer. Just tell them that Jesus says that you need them to get by till you can better understand His teachings and that should shut them up.

I can certainly relate . I am 57 and that is what my mother says to me . And it does hurt .She brags she has never taken anything but a asprine for 83 years .I try to tell people like this that if ,in fact you have had all consuming pain ,you will do anything and take anything to releave it .If they have not had real pain like this they will never understand .I have quit trying to justify to other people my medical regime .I just say wait til you have walked a mile in my shoes then you may have the right to critisize .Now that I have been dignosed a few people have backed down . My mother said she looked it up in the Merk book and she figures I am making AS out to be much more serious than it is . How do you argue with that .

I have family members that say the same thing. I tell them I am afraid to not take the meds.

It's hard, people dont believe if they cant see it... So send them this website ask them to educate themselves, and tell them it hurts when they make comments to which you feel like you have to defend yourself. Ask them to read the SAA monthly newsletter available online, and you need only their support not opinions unless positive.

In the end they really will not understand which is why you have us :)

Luckily I have not had much of that, I get more annoyed at people looking at my bent frame and considering it is ok to talk to me about what is wrong and then telling me what a poor wee soul I am!!!!!!

If people consider thay know better than you do about your body, or than your doctor about your treatment, then it might be intersting to ask them when exactly it was that they did their medical degree................

Are you comfortable being sarcastic? Write out your rheumatologist's name and office number on some index cards, and have them ready. Next time you hear that, say "Maybe you have a point there. Could you please call my rheumatologist here and let him/her know that you have a great idea about my medication regimen?"

I had a mom who thought I was exaggerating the pain, till she finally had a nasty cycle of debilitating flare ups of her osteo arthritis.  The weather kept being windy and cold and rainy every other day for two months, and she finally hurt the way I did.  I would never ever have wished for anyone to feel what I was feeling, but she defends me to the rest of the family now that she finally knows.  Before that, I used to cry and sulk and spend a lot of time avoiding the family.  And I tried to read a lot of fiction to escape into fun books.  I also spent a lot of time with my supportive husband and cat.  Pets are always supportive.  They are just smarter than people when it comes to sizing up the state of your health on a bad day.

OR  they say you look so GOOD how can  you say you feel so BAD You don't look sick!
Hugs
cp

Unfortunately I have a sister who is severely disabled with RA and my family understands what arthritis can do to you.  I don’t think they believed me in the beginning because I am not deformed like her.  I printed out information on AS and gave it to them to read and I also gave them the Spoon Theory to understand what I go through on a daily basis. Then tell them that you do not enjoy injecting yourself on a regular basis.

www.butyoudontlooksick.com

Thank you. Thank you. And, thanks again for asking this question. You have let me know that I am not alone in fighting this discriminatory attitude while in pain and trying to work full time and most especially, live a life of purpose and JOY. It's hurtful when strangers say such hurtful things, but when a family member, especially a close one says things about my medication, it is crushing. Everyone--hang in there! Tomorrow is coming and it could be a better day!

It IS tough; I even have relatives in the medical profession who roll their eyes & whisper to each other that "Jacqui is a pill-popper!"  It is very hard on my feelings and hard to ignore.  I told them the name of my disease and they said, "That is a young man's disease!"  and wonder what crazy doctor I was diagnosed by.  This is a tough life to lead sometimes!

I also take meds for Blood pressure, diabetes, cholesterol and now MTX and Vicodin and Celebrex. My brother says that to me along with others. I say to them be glad you don't have to take meds. What goes around comes around and look out, one day you might eat those words. Only a foolish person would stop Diabetes and bp meds. And I guess they don't know what real pain is. Why would someone buy and take medicine if it wase'nt necessary? I need my meds to live and to live as pain free as possible. People need to MYOB.

Luckily, no one has ever said that to me. My friends and family are pretty understanding, particularly since they've watched me battle AS issues for many years and know the pain I've pushed through ... And still managed to be an athlete and live my life.

Some friends have gently asked if I've tried 'alternative' meds, which I have - and they're absolute crap. I don't trust anything that hasn't had rigorous double blind scientific testing.

Having said all that, some meds are pretty rough, and each of us has to individually determine whether a medication is helping more than it's hurting us. I'm transitioning off Remicade, because I developed antibodies, which is a *really* painful ordeal and not one that I want to repeat. It's stopped working, anyway. Now if only MTX didn't make me so nauseous ...

Ignore them, as it is you who would have to live with the increased pain if you didn't take all of those meds. Why should it bother them? Are they the ones who pay for them?

I know for a fact that without my meds, Life would be very unbearable.

Well, my family keeps forcing me to start taking medications and I keep delaying things. I am just afraid of the side effects but now the pain has reached a point where mere pain killers are not enough and soon I will be starting my biologics. I am still afraid but have no other option. I was wondering what were people doing when these biologics were not invented. How did they cope with this pain and suffering?