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Understanding
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Caprice_WebMD_Staff posted:
What do you wish others — friends, family, doctors — understood about how RA impacts your day to day life?
We must let go of the life we have planned, so as to accept the one that is waiting for us. ~Joseph Campbell
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An_248637 responded:
I wish they could understand how quickly my RA symptoms can come and go. I may feel pretty good one day, but practically disabled the next. I have had symptoms for 3 years, and I have a good rheumatoligist who has given me good, solid treatment. With medication, I am much closer to normal, so I have days when even I feel like I might be OK. But out of the blue, I can have a flare up. I might look completely normal, but feel awful. Some friends, still expect me to be able to handle everything I used to because, basically, I still look healthy. I take pains ( sometimes a lot of pain!) to look my best. I wish they could understand that even though they might not see it, this disease really hurts!
 
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Caprice_WebMD_Staff replied to An_248637's response:
Have you tried telling them, explaining it to them just as you did here? And what would there understanding look like to you? How would it positively impact your life? (((softhugs)))

I don't have RA but do have another chronic pain condition and I also look just fine (and I want to keep it that way for my own sake) and not many around me really understand but they have learned to take my word for it when I say "I just can't today".
We must let go of the life we have planned, so as to accept the one that is waiting for us. ~Joseph Campbell
 
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Hearme replied to Caprice_WebMD_Staff's response:
To be quite honest, I have told them, but I am embarrased to stand up for myself. I used to be a lot more active, and I still expect it from myself, and feel that they do too. Also, I have always hated it when you ask someone, "how are you?" and they give you a medical update! I don't want to be that person. So I guess I am having a little trouble getting a proper balance with how much info to share. I can't explain the embarrasment part, I guess I need therapy! Lol!
 
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Kelly79 replied to An_248637's response:
This is exactly how I feel. I absolutely hate having to rely on others to help me. Until all of this happened to me (2 yrs ago), I never relied on anyone for help. My dr refuses to give me pain meds. I take methotrexate 10 mg, voltaren 75mg, & plquenil 400 mg. I have a very physical job and sometimes I just cry while working. I can honestly say even in my worst flare up, I have never called in. Although I wanted to. I have not had a "good day" since Oct 1st. Everyday it is something else. I go to a new dr on the 20th, hopefully he can help me.
I can't stand when I feel bad and people say well you look alright.
 
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hurtin10 replied to An_248637's response:
I totally understand and it has and is a constant struggle both for friends and family but also within myself. My family raised me never to complain and I was taught to rise above pain but with my RA and a back injury I can't much of the time. What happens is I end up feeling bad about myself and shutting down.If I talk about my pain I am told to get over it and on my worst days someone will often say you look great.I thought they would understand because I have been a very strong person up until now and haven't had a lot of pain until this so I thought that they would understand it is real.I wish I had some helpful tip but for me it has been a long process and I get my support from other people dealing with similar issues.Hang in there.I try to be grateful and know there are people with more difficult situations but I do allow myself to feel sad and bad for a limited amount of time.It is hard to have this type of chronic pain and I hoping to come across an article that might help explain what I am going through.They might believe it if a Dr wrote about how hard it is.
 
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hurtin10 replied to Kelly79's response:
You sound like a real "trouper"-an amazingly strong person and I admire you.I can tell by the fact that you have made yourself go to work when it probably feels impossible to get out of bed.It amazes me that Dr's still refuse to treat pain. Misinformation has scared them and as a result there are a lot of people like you living with unbearable pain.I really hope your new Dr understands and will properly treat your pain.It has been a long struggle for me to have empathy for myself and let others help me.It isn't a sign of weakness- that is what a friend keeps telling me and I am starting to believe it after all these years.We all deserve help including you!Let me know if your new Dr is helpful.


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