Hi all, it seems like I'm constantly running into people who have no compassion for RA suffering. "If we would just suck it up and change our diet!" Hummm. Like what? , eat more broccoli???
I'm one of those convinced that what I am doing, not as fast as I'd like , is working. It buggs me for people who havn't been through 4 months of hell to say, oh, just chg your diet. No compassion for my pain, no words of encouragement, it s _cks! Attitude, makes a big difference and that one gets me hot under the collar.
You all understand so perfectly, thanks for being here! Lynda
Who are these people? Why do they think they know what you should be doing? Ask them if they'd be willing to have a consultation with your doctor to see if together they can agree on proper treatment, since your doctor obviously is in need of their input.I sorry Lynda.
I hope you feel better soon, and see they are just ignorant.
Totally understand, it seems its the arthritis part that makes people think its no big deal. Liek everyone gets it eventually...
I get extremely frustrated as people say that kind of stuff to me as well and I couldn't possible eat any healthier due to the crohns. People are just ignorant
Believe me, it never ends. It doesn't even phase me anymore. People will ask me why I limp or why are my hands are so deformed or why I have those horrible scars on both knees. When I tell them I have arthritis, either they or someone they know also have "a touch" of arthritis and a couple of aspirin is usually the cure. I obviously have some other disease because they don't look like me. It's hard sometimes but I've found that a lot of people will stop and take a 'little" time for me to educate them about the disease.
I try to bear with people because when I was dx'd some 20 yrs. ago, what I knew about arthritis could have probably filled a bottle cap. Most people are uneducated about our disease and some people just don't care. Luckily, my entire family including in-laws realize that RA can be very debiltating and effect a lot of people. I also realize that until you've been through it, it's hard to comprehend the physical and emotional aspects of this disease that we all deal with every single second of our lives.
It kinda evens out even though it doesn't seem that way. When I find 1 person to truly inform about arthritis and who truly cares, it makes up for the 5 "know-it-alls" who have all the answers and are seriously close-minded on the subject. You know, opinions are like ********, everybody has one.
I agree with your posts! Even though hubby reads up on it and asks lots of questions, every once in a while he comes up with " if you just got a little fresh air and exercise, you will feel so much better" That makes me nuts. He knows I would be doing those things if I could!!!I get the questions also because I waddle like a duck. Hard to miss there's an issue.
I'm new to all this but have received the 'look' on a number of occasion (one from my Rhemy and he's getting it tomorrow
lecture over.... just ignore the buggers!
It really can be so hard to put up with all the nonsense, can't it? I have been diagnosed for 4.5 years and I still find it hard to deal with.
But, like Bingethinker, I try and remember how ignorant I was before I was diagnosed. Even worse, my sister has lupus and has had it for over 20 years. Sometimes, I thought she used her illness to get out of doing things, or just to get her own way
After I was diagnosed and started to go to online support groups, I called and begged her forgiveness for being so clueless and unitentionally cruel. I had listened to her tell me about lupus and sat with her during her many hospital stays and outwardly supported her. But behind her back in my own family I really thought it couldn't be that bad, and if she would just loose some weight and have a better attitude................. Now, a few years and much pred weight gain later I have so many thoughts and words to eat. The words were said mainly in discussions with my husband and I am so grateful that neither he nor I ever said them out loud to her. Frankly, my husband feels as bad as I do about the things we thought and said. I feel so ashamed sometimes.
I also told her I prayed and told God, "OK, I get it, I WILL be nicer to my sister, LESSON LEARNED, you can take the pain away now, God." She laughed and told me, "I know you did your best. It is really impossible to understand what it is like to cope with chronic pain and disease unless you have to live with it." Such a gracious way for her to deal with it.
We are closer now and try to support each other as much as possible. I just wish I had somehow not judged her without understanding.
I try to remember this when someone says something cruel, uninformed or downright stupid to me in regards to RA. But it still hurts, sometimes no matter what.
Sooo, hang in there Lynda, and come tell us when the dummies hurt you and we will cyber beat them up for ya..........
I think it is helpful for newly diagnosed folks to know we all go through the "mean people" thing.
Yeah... I liked the bumper sticker my SIL had, when me and hubby were dating, on her bedroom wall. It said --
Mean People Suck
I like it when people who know about the RA but who you don't really know that well will say "oh you look good today, you must be feeling better I can tell" when you are really having a terrible day.....lol...that only happens when sitting cause I usually waddle like a duck as well My co-workers knew me before RA and are very considerate and helpful. I used to not say anything with my students, but since sometimes I limp, or cannot pass out papers I usually tell them I have RA in the beginning of the quarter. Then I tell them that we will learn more about it in chapter 9 OMG I am glad I read this topic. I have been recently diagnosed with sero-neg RA . I totally can side with what I have read here. This is crazy , I know we all have problems, yes I have heard the same about "everyone has aches and pains" a hundred times. The ones I like the most(unfortunetly from my family) are " are you sure its RA? , you are getting older" ( I am 40!) Its a sad disease for sure, And I liked the answer of calling it rhumetoid disease instead. Everyone hang in there , I love this board so much , its my piece of comfort!
Look at this i found....so true
Sometimes you just gotta have a sense of humor!
The top ten worst suggestions commonly given to someone with a chronic illness:
1)Have you tried holistic options? (many. I'll bring it back up with my doctor on my next visit, thanks.)
2) Could it be your stress? (My opinion is, it is my illness. I'll bring it up with my doctor though, thanks.)
3) Could it have to do with the altitude? (I'll bring it up with my doctor...thanks.)
4) I read in {insert any generic magazine here} about a new medication. Have you heard about it? (I was on it when it came out 17 years ago. but I'll bring it up with my doctor. thank you.)
5) Have you thought about being in a trial study? (I'll ask my doctor. thanks?)
6) WOW. If I were you, I don't know what I would do. I might just kill myself. (Thanks?)
7) Have they found what is causing the problem? (no. my doctor is an idiot. I'll remind him, thanks!)
8) Have you tried hypnosis? (I'm still sick, but when the phone rings I bark like a dog.)
9) Have you googled your illness? (....no! thanks!)
10 Have you ever thought you were getting sick because you haven't wrapped your house in aluminum foil because, you know, the aliens have been bugging our houses for the past 30 years and in some cases, making people really sick. I read on.....gee I lost the web site. but it's true! I heard it from Sally's cousin's sister-in- law. And then every time you use deodorant you would think you would be warding off these bugging rays, but it still makes it worse, so you are not being pro-active to your health by wearing that deodorant. I can't believe you! If you wanted to get better you would stop wearing deodorant..(voice gets fainter and fainter the further you just walk away.) THANKS!!!!!!!!!!
LOL
Thanks for the chuckle
Thankfully noone has tried any of the lines in SarahP's post - I'm not sure I would be able to keep up my good mood and civil, understanding replies!
KT
lol yes I am the same, the more you dwell on your pain the worse you feel anyways. But it does make it harder for people to understand that you are not well.
I mean I work for a beer company as an event coordinator so my job is to be fun, grrrrrrrrrrrrrr, i am the queen of "happy face" lol
I told my brother about my RA diag. this week. He wrote back that he can't help think that some of my medical problems are self inflicted.
He has always had difficulty with math etc... so I wrote back and said "Yeah, like maybe it's self inflicted that you can't do math"
I haven't heard back, so I think he got the point.
I've gotten to the point that I mostly ignore the ignorance. The only time I've lost it lately was last year when I had a salesperson try to sell me a foot massager for 0.00. She claimed it had cured her RA!!!! Needless to say I lectured for awhile, made my point and left. Other than that I've been real gooooood. People just don't understand what chronic illnesses are and how they affect us and I don't have enough energy anymore to try and educate them. Lindy