I get this a lot from my parents, teachers, and especially the gym teacher. I had to stop taking some meds, and I need a cane at school, which just makes people laugh even more. It's been over a year, and they finally think that it's fibromyalgia, but I still have a few more blood tests and examinations to make sure. Do any of you know a good way to deal with these people?
Try to talk more to your parents and make them understand. They love you. Get them to understand and take your side. Make sure the doctors speak with them about the severity of your condition. If that absolutely, positively doesn't help, go to your favorite teacher. You shouldn't even be taking gym class,IMHO, unless it is specifically tailored to your needs!
I was diagnosed with RA at 16. Don't expect others to understand if they are ignorant of this invisible disease. Educate others to help bring awareness about RA. Use effective coping skills to tolerante the moment.
talking to your parents won't help, but it doesn't hurt to try. I'm 26 year old female who is a concert promoter and I definitely got off looks for leaning on things and propping myself up, or using my arms to pull me up from a sitting position. I get looks. people don't understand that WE with "chronic pain", defined as pain lasting more than 6 months, we with chronic pain hurt more when burned on the same stoves as others. it's hard for anyone without chronic pain to even begin to comprehend what YOU are going through. as for the jerks, you shouldn't need to defend yourself or explain yourself to them. The thing that I've learned that is also fun to do is just be so confident that nobody can make fun of you even if they do you just look at them with a straight face and don't say a word. For you are better than them. and you are better than them because dealing with something like this makes you grow stronger. How many of these people that are making fun of you are going to be in your future? Just your parents? I print out facts, facts for my boyfriend. Stuff from web M.D., sometimes I'll even just read them the definition of my problem and rub hardcore facts that I researched in their faces over and over till they either leave me alone and eventually believe me or they don't believe you and you have to seek out a support system that doesn't include THOSE people. I'm rambling- my meds do that. but I do understand. I'm still having a hard time relating the understanding of pain to the people in my life also. you are not alone!!! sometimes I've told people "it's people like you that make me wish I could project my pain on doubters for five minutes so they could fathom my pain and see for themselves how horrible it is. And how strong people like me are day-to-day." it's not just physical, it's takes a toll mentally and most are not mentally strong to continue work or school. keep your head up, confidence and hardcore facts are my weapons for your problem. God bless you, take care.
Thank you Weldingchick for your words. You are so right! The fact that we function and continue to perform, some of us consistently exceeding our boss' expectations, is a testimony to how strong and resilient we are! Yesterday, I had a very bad day and you just made today great for me! Thanks again!
One GP once told me that by the time the rest of the world catches up to where you are at with your levels of pain, like in their 70s or 80s and dealing with this level of pain you'll be an old hand at it and knock em back for not coping!
well put weldingchick your words are well said i used to have a hard time telling my wife of 32 years the pain im haveing then she had a accident and got to see first hhand how hard it is to deal with jurks
I am 33, use a cane and can no longer work. It kills me, because I used to be a highly productive person. Then I was in an accident that changed my life forever. It took a long time for my parents to come around and right aside from my docs & online support groups, that is about all the support I have. I was diagnosed with Fibromyalgia, Ņeuorpathy, Ulcerative Colitis & a newly diagnoses of Myofascial Pain Syndrome, oh and Chronic Fatigue Syndrome. I have fighting for some relief for pain, I am in special physical therapy, see a therapist & pain psychologists, Neurologist, PCP, Nutritionist, & have seen countless others. But I have learned that we are our biggest advocates, I too research all I can about my conditions, and will even bring it to Dr. Apps, bcs even they can be ignorant. I have done everything under the sun short of surgeries. But I have become a stronger, better person since this has become a part of my life. Pain changes people, but for me it also opened my eyes. I lost friends & no matter how much it hurts I have also realized that negativity only brings more stress, more flares and more bad days. I wish I had an answer for you but there is a ton of excellent advice in response to your question. No one will understand unless they are going through it themselves. I know its hard, but WE have to stay strong and I think you will find you are stronger than you think. Good luck, I am new here so I hope you keep us updated. Gentle hugs!
I just read all the posts on this thread and you all rock. think about it- our bodies may be in pain for ridiculous non-stop years.....but when walking in a crowd-who is the strongest person there? you, me, us. If a group of people were suddenly hit with the pain issues we have, they would be falling over, crying and calling ambulances. but we keep moving- it still hurts but fuck it! chronic pain builds a strong mind. I've learned this first hand. love you all.
I know this sounds weird, but be nonchalant about it. get a colorful cane or skull cane or pink, something to match your personality. people will see it more as part of you and permanent. take your cane with you everywhere even if you don't know you'll need it. this is handy for you and sends a message to others that you do neeeed it. Eventually, you will walk so naturally with the cane that you will not even noti pec others checking out your cane. I'm 27 and have a pink cane, a skull cane, a blue one and a black one.
if someone asks you a question that makes you feel uncomfortable, say, "why do you want yo know?". then ignore them, or say "don't worry, it's not contagious." and then stop the conversation and reply only with silence or a shrug of "mind your own business".
don't mind the coach. he can't force you to do anything. half ass it, walk quickly instead of running or lift smaller weights. when he realizes you are happily willing to do an alternate exercise (that you are not simply looking for special treatment), he will take you very seriously because he doesn't want to be fired or sued! ask for an exercise that is less stressful on your joints, and offer to do extra ab workout to make up for the difference. talk to him about this in private or aside so he pays attention. tell him you've been stressed out and needed to talk.
this should work once he realizes you are sick, not lazy, and willing to do extra exercises inside your comfort zone.
basically convince him to give you an even harder workout that does not stress the joints. he will probably agree, but you should talk to your guidance counsellor if he does not. this is what I did to convince people my pain was real.... I was willing to do more taxing exercises so long as they didn't stress my joints. ab exercises might be a good option unless you have a currently bruised rib.