30 Responses to “Sympathy and Living with Rheumatoid Arthritis Symptoms”
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Could it be that you (like me) strive so hard to do all that we can with our RA? I know that I don’t want sympathy all the time. I know that it irritates me when I am doing something that I KNOW I can do- and someone tries to help because I have RA. I struggle with this because I want them to understand that I know-for the most part- my limits but when I can’t do something- I will admit it. I would never use my RA as an excuse to get out of something just because it is there. I want to be useful and make an impact. I don’t want pity. I just need people to work with me and let me judge my abilities. I think that is where the lack of sympathy comes in- from a lack of understanding that and from my own push to do it “all”.
Hi Jules!
Yes, I have heard that twice before, what you said: “I know that it irritates me when I am doing something that I KNOW I can do- and someone tries to help because I have RA.”
… but, I’ve only read about this. I’ve never experienced it. I have the opposite problem.
“I don’t want pity. I just need people to work with me…” Yes, pity would not be a great improvement. I wouldn’t like that either.
You may be right about the lack of understanding being in part due to “my own push to do it all.” I’m really ready to throw up my hands and say, “I can’t. I’m sick.” But, I’d probably give up for only 5 minutes, then back to work. Haha.
Still, I don’t think I’ve never given out the signal that sympathy would be unwelcome…
Speaking as someone who does not have RA I would say it’s because most people really don’t know what RA is all about. I remember hearing in high school that an acquaintance had RA and not really knowing what that meant. The one person I currently know with RA (hi Becky!) is like you, very much a ‘trooper’ who presses on to do what needs to be done, and accomplishes far more in pain than I am able to muddle through in a day without pain. I am just now learning, through your blog and my friend’s rare admission, how much pain and difficulty people with RA have. And then when you say you don’t want sympathy I’m not sure what TO say. I can’t even imagine going through each day in pain. I don’t want to offend with lame sympathetic comments. I AM sorry and sad that anyone needs to live in such pain. I don’t know how best to support and encourage and sympathize.
I can only speak for myself, but I’ll try to clarify:
I would never refuse sympathy. I love sympathy. ( as opposed to pity, which I’ve never experienced.)
However, we do not ask for any sympathy. People tell me every day that what they want is some understanding: cutting slack when we can’t do something, no eye rolls, letting us say what we can handle, trying to understand what we are dealing with, just asking how we are doing. This would make my world a different place.
Again, Kim, you are doing an awesome job of giving support, just by caring enough to try to find out!
I believe that RA goes along with everything else in life that, unless one has experienced it first hand, most people just can’t and won’t understand, empathize or sympathize.
If one has never been in pain, most can’t understand how much pain can hurt. If one has never been battered, most can’t understand why a woman “just won’t leave”. If one has never lost a loved one, most can’t understand why people can’t just “get on with life”. If one has never experienced any heartache or suffering, most can’t imagine how or why the pain could be so great.
If the outside of your body LOOKED like the INSIDE of your body FEELS (!), I think everyone might “get it”! Unfortunately we all know too well that, RA for the most part, is an invisible illness that most people just can’t identify with. I never DREAMED how much a shoulder could hurt until MY shoulder did. Now I have compassion for others who have the same pain. The same goes for the rest of my body parts that I never knew were there until they started hurting!
I guess what I’m saying is most people will never understand unless they’ve been there and I suppose I should be thankful for their sake that they don’t…. that doesn’t help me though, but I guess that’s just life.
I had a similar reaction from friends lately when I had the flu. It wasn’t even much of a flu, but folks did offer to come over with soup, do errands for me, etc. I was surprised, since I don’t often get that reaction even when I’m very clear that I’m hurting with RA. (By “surprised,” I probably mean “hurt.”
But when I thought about it a bit more, I finally theorized that folks reached out to me so prolifically when I had the flu because they know how to respond when someone has the flu. Someone has the flu? Bring them chicken soup.
On the other hand, my (more cynical) secondary theory was that the flu has an endpoint and RA doesn’t. Friends can’t devote their lives to caring for someone with RA. Saying, “Let me do your laundry today for you since you are hurting so bad” might worry them — they might be on the hook for doing your laundry every time you feel bad, which is all the time!
I’m not sure, however, how to generalize these concretes acts of helpfulness to the kind of silence rather than acknowledgement I’ve gotten from so many folks. Is it the same thing, is it that they can say, “Poor baby!” for something they know will be short term, but they can’t emotionally afford to say “Poor baby!” for something that will last a lifetime? I’m not sure what it is.
Laurie,
Thank you for the excellent comments. Such good points its hard to add to it.
Yes, why would it be so hard to just ask how you feel? Someone tell me please.
Is it because they are uncomfortable with how I may answer?
I can tell you that unless it were another RA’er, I’d probably not share much. The eyerolls are worse than ignoring the RA completely – or are they?
I have a post drafted about this very same phenomenon. It’s so frustrating to be ignored. Like you, I don’t want pity. A little compassion every now and then would go a long way, though.
Yes, WarmSocks, “ignored.” Maybe I should have used that word. Good word. Like I always say: If only I could get into their world of denial, where the RA is no big deal. How can I get into that reality?
I feel people just do not understand RA and unfortunately if it does not affect them, they don’t care to understand it. Most people have had a UTI or Kidney infection so they can understand how that feels. Until they have to live a few days in our pain filled bodies I do not think alot of people will ever understand.
Kelly, I have learned to hand the bags from shopping over when my husband is home from work- I dont get up to head him off from cleaning the kitchen like I use too, I know now it is okay to have painful days and to get a little extra care….. it goes a long way on those *over the top days of RA** ….. and PS… Yup, I am a Mom, of 4 of the most glorious grown children on Earth, 2 daughters married with my grands live in Alaska where I raised my kids, 1 daughter in Chicgao finishing her Masters in Psych and a wonderful son in Maine with his family in the US Navy =) soon to be back in Virginia….. okay I shared enough… blessings to you and this site~
This whole discussion is fascinating and enlightening! Excellent points and different perspectives…
So what do you do when you either get ‘poor baby’ sympathy or none at all from family members? How should one be sympathetic and understanding without pitying to the point of causing the suffering party to feel sad, down and less than a whole person? Lessons in sympathy should be required for those living with painful chronic diseases. (great now, I’m fired up
)
Isn’t that just cruelty? With the sort of pain we live with and yet not a scar… not even a droplet of blood to show for it. RA… RAge I call it, RAge inside and within, cruel RAge!!! Cruelty I call it….
I dunno. I got a pretty good pity party when I was first diagnosed but that’s faded now. It’s like the fact that I’m in pain is taken for granted by most people. I don’t mind reminding them, especially on days when I have some limited mobility. I think that’s the reason. After the initial shock of your having the disease wears off people don’t really think about it anymore, assume you’re “used to” the pain, or in all honesty get tired of hearing about it.
I am a new RA, recently diagnosed, and at first I thought I wanted some sort of sympathy… but now I really don’t. I do want understanding, so when I can’t walk as fast, I just tell the person I’m with “I can’t walk so fast” (as I limp a bit too). And I actually thought it was cool when I told another friend that I have RA (in response to He are you training for your next tirathlon), his response was “You can still swim and bike, right?” and I agreed, and told him I’d like to be in a Tri relay next time. I liked the fact that he didn’t pity! I don’t know, for some reason I really appreciated his comment!
I think the one thing we all have to realize is that RA progresses differently in everyone, Plus everyone has a differerent tolerance for pain. Some RA is more severe and more progressive than others. Some have other underlying diseases associated with RA. Its not that we are looking for sympathy, its that the point has to get across to others that just because we “look ok” doesn’t mean are “ok”. I think I speak for the majority of us when I say please try to understand, there are days when we just can’t do things, there are days when we “flare”. A lot of times we can’t really make commitments, due to the fact that we don’t know how we are going to feel at any given moment. That’s what I try to get across to people but we are all different!
People think that if it is invisible, therefore it does not exist, although we know better the pain and suffering that can be involved.
WOW – great comments. great ideas. Helpful. Awesome.
Really? I must live in a great place, because everyone I tell about RA expresses sympathy. Then they apologize for squeezing my hand too hard when they shake it or hugging me too tightly. They may not understand, but they are concerned, and they ask how I’m doing the next time we meet. I feel so sorry for those who have negative experiences!
Jodi,
Happy for you, but I am not asked how I feel, except by other RA’ers. or my kids. This whole page of comments is making me want to go start an RA blog – oh yeah I did that already…
You are absolutely right Sheila!
Sometimes, sympathy is all I want. No one understands how painful it is living with RA.
Hey, Lana!! Tons of sympathy here for you! We get it. xo
I never got sympathy or even anything remotely like understanding until I sat down, wrote my onset story and explained AS to all of my friends and relatives and posted it all for them to read. Now they always ask me, “how are you feeling” “do you need anything” they WANT me to post on twitter or facebook when I am having a flare so they know that something is going on so they can bring me food, care for me while my husband works and make sure I am ok, have meds and such. It is amazing. Until I was able to stop worry about being a burden, whining, annoying and pathetic and wrote exactly what it was that was happening in my life, people suddenly got it. I explained that AS is worse than my car accident, my friend dying, and having a miscarriage AND fracturing my spine even if they ALL had happened at the same time. Their eyes opened wide, I was finally getting somewhere. I still feel strange about posting it on twitter when my AS is kicking my ASs… but I know that I am leaving the doors of communication open for those who desire to come into my life amongst the hurricane are able to.
Well so far I have never received pity nor sympathy. I have however received understanding from some. I am however surprised at how fast I became invisable to others who use to call all the time and now I dont hear from them at all. In defense of non RA’s though, prior to being diagnosed myself I also did not know much about RA. I have one Aunt who I have only met 3 times in my life, other than that I dont know of anyone else. I have seen people with the disfigured hands and always felt terrible for them though. I dont think 8 months ago that I would have understood the full scope of the pain and how severe. I have had alot of pain in my life and would have thought I would have been able to understand, but I would have never guessed this! Anyways I do try to remember this when my feelings get hurt by someone. I try to remember that maybe I would not have gotten the whole picture either. I feel I have always been a compassionate and kind person, but if you don’t know….you don’t know. I do wish their was family programs for people when they are newly diagnosed so that the familys and maybe friends who want to go, could go and get educated. I relise this is just dreaming, but it would sure educate alot of people and quickly. Imagine if every time someone was diagnosed, 5 people where properly educated……! Well we wouldnt have to explain over and over what we go through for long. This disease if anything has taught me patience and tolerance of ignorance. I am really lucky to have a wonderful husband and some of my family members have been a blessing as well. I have read some other peoples stories and feel so bad for them as they have NO ONE! Those are the ones my heart really goes out for. This disease is really hard. But thank god for the few that do undertand and offer their support.
Like you, I have really not seen sympathy or pity. & I can count on one hand those who don’t have the disease, but make an effort to understand. Or will let me go on describing it for more than 30 seconds without sighing or interrupting.
It’s just easier to ignore. I don’t even worry about people reading what I write because I think they ignore that I blog, too, since that has to do with RA. Haha.
I am doing some thinking & planning about educating programs like you say. You are so right about how quickly that would make an impact. Like you said, I didn’t have a clue about RA before it knocked me flat. I’ve mentioned that before, but it’s a good reminder.
I was diagnosed with RA about 5 weeks ago & immediately started the Methotrexate therapy. The nausea was very bad at first, but has improved every week. The fatigue is sometimes frustrating. I grew up with migraines and was diagnosed with fibromyalgia at 39, but I really didn’t know pain until I was stricken with RA. Sometimes, you just have to stay in your PJ’s and rest. I have embraced the idea that it’s okay. I may not like it, but it’s still okay. I have a favorite blanket, chair & heating pad. I am well-armed!
THE THING THAT BOTHERS ME MOST IS: WHY DO PEOPLE ASK, “ARE YOU WELL?” or “WHEN IS THE DOCTOR GOING TO GET YOU WELL?” It has got to be the most insensitive questions on earth. Of course, “DOES IT HURT?” isn’t too far behind. If people do not know about RA, then they should look it up. Stupid questions and insensitive remarks hurt emotionally. I must accept that I have RA. I don’t like it, but I didn’t get a vote in the matter. I can & I am fighting back. But … the negativity & ignorance of others (incl. educated individuals) is hard to deal with. I DON’T WANT PITY, BUT I WOULD APPRECIATE A LITTLE COMMON SENSE!
When I was first diagnosed with RA, I didn’t tell anyone that lived close enough by that they could do anything for me. I posted to my blog, called my parents & my best friend, but that was it. My two best friends have basically been “business as normal” since they live far away. My parents never seemed to catch on that I really had something wrong with me.
Four years later I took on a little too much of a volunteer position and found myself having to tell people about the RA. I sat down with people, one by one or two by two and told them what was going on, not entirely in detail, but enough. Of those 14 women, three of them check in with me nearly weekly, asking how I’m doing, making sure to give me gentle hugs, etc. The other 11 really don’t say a word about it. They don’t even ask how I’m doing in a normal context. It’s like they don’t want to know and they are purposefully not asking.
Since I started my RA blog, people that I’ve known for ages, but hadn’t expected interest from have been contacting me with words of encouragement. I don’t get offers of help or anything, just “I’m praying for you,” but for me that’s enough.
Thank you for posting this discussion.
I have was diagnosed with RA about 15 years ago. When it first happened I was grateful to discover that I wasn’t going crazy. The blood borne disease had flooded my brain which induced emotional states I couldn’t account for. Once I gut it under control with the prescribed drugs and my symptoms receded, folks who know me well began to respond as if there was nothing wrong. I think a good reason for that is to be able to control the symptoms one must psych one’s self up to over come the pain and chronic fatigue. The disease strengthened my will-power. I found that some people actually challenged me if I had a disease at all, simply for the fact that I force myself do do what needs to be done and attempt to ignore the pain. If you have RA you know of what I speak: it takes a great deal of inner strength to keep active and involved hence you appear that you are healthy – until you have a “bad day”.
To those who have the disease, keep your chin up and stay focused. “that what does not kill you, makes you stronger”, and “be of Good Cheer”