Sympathy and Living with Rheumatoid Arthritis Symptoms
Are there any sympathy rules for living with Rheumatoid Arthritis symptoms?
The other night, one of my boys said to another, “I’m not doing that. You do it. I’m sick.” Nothing serious – there have been several courses of cold and flu in my household recently. But, I raised my eyebrow.
Of course you can think faster than I can type and you are one step ahead of me. I thought: I’m living with RA; when do I get to say that? When is it my turn to say, “I’m sorry, I’m not doing that; my Rheumatoid Arthritis symptoms prevent that”?
What are the rules? When I was 8, I got to go to bed when I was sick. There were some perks to sick days.
What does Rheumatoid Arthritis pain have to do with a kidney infection?
Except for the Rheumatoid Arthritis diagnosis and thirty years of thyroid disease, I’ve always been very healthy. 😉 Lots of patients tell me that – probably it’s due to the extra strength immune system which also causes the RA. However, last Easter, thanks to my medically suppressed immune system, I had my first kidney infection.
What did the kidney infection teach me about RA?
The kidney caused pain in my lower back which was similar to Rheumatoid Arthritis pain. It hurt. I’ve described my high tolerance for pain before.
For a few days, I lived with the kidney pain, only mentioning it to my daughter. I had antibiotics. It would be gone soon. Suck it up.
Word did leak out about the kidney infection though. And what followed was startling. It still amazes me.
Someone called me on the phone just to sympathize. She said, “Ooo, that hurts!” Then, during a period of three hours, three different people called and said almost exactly the same thing. At that point, I’d been living with Rheumatoid Arthritis for over 3 years and no one had ever said that to me.
With a 3-day old kidney infection, three people went out of their way to say,”Ooo, that hurts” within three hours. Every one of these women is a kind, sympathetic, Christian woman. But none of them had ever expressed such sympathy to me before as I lived with the RA.
In case the reader does not have RA, let me be perfectly clear. The kidney infection did hurt and my fever was 104 F, but it was nothing at all compared to living with Rheumatoid Arthritis.
It has been 6 months and I am still haunted by this episode. Why is there so little sympathy for those living with Rheumatoid Arthritis? I don’t really want sympathy. I just want an answer.
I do not want sympathy; I want to be well. I want to do everything I used to do – and do it quickly and easily… And I want to do it all by myself – without needing help or having people wonder what my problem is. I want to be the caregiver of my children for many years to come, not have them take care of me…
Meanwhile, living with the reality of Rheumatoid Arthritis
The Rheumatoid Arthritis diagnosis itself is devastating. Unsympathetic reactions are an added burden. We will be okay without sympathy, but I for one, am curious: Why is there so little of it for those living with RA?
Recommended reading:
- 3 Reasons to Stop Saying “Complications of Rheumatoid Arthritis”
- My Quest for Answers to Questions About Rheumatoid Arthritis
- What is Remission of Rheumatoid Arthritis? Part 1
- Psoriatic Arthritis
- Is there a blood test for Rheumatoid Arthritis? Part 1
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”.
I agree with you. I have RA for 17yrs now. I don’t want sympathy either. I am going through something with my sister right now that I don’t even know how to respond to her. My parents are going through a rough time right now & their use to me always being there but my RA is getting worse & I can’t be there all the time like I use to be. So, I ask my sister to help out more cause I am getting worse. Her response was,” It’s always about my disease & I need to quit feeling sorry for myself & think about our parent & what they’re going through.”
Is it that wrong that I am asking for help from her? She made feel like I was a horrible person?
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.
:victory: Wow Kim! Your friends are so lucky to have you!
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! :heart:
I am so late adding to this post but I just read it and it is so crazy. I have been diagnosed for 8 months now but suffered before that for at least a year or more because of arrogant doctors who wouldn’t listen to me. Thank god I live close to the Cleveland Clinic. Anyway, before I could get the right treatment I lost my job as a nurse. I worked 12-14 hour shifts. I always had glowing evaluations but with this illness I worked as hard as I could but working in a fast paced urgent care center I couldn’t work as quickly as before. Even healthcare workers don’t have sympathy for people with this awful disease. When my boss fired me she said ” I would ask you how you are and you would always say you were fine”. I said “yes because no one really wants to know how you are when they ask that question. I said did you really want to hear that when I wake up in the morning I can’t pull up my covers because my hands hurt too much, I can barely walk down my steps and I have to walk down them one at a time. I have to take something for pain get a shower to loosen up and then lay down till my pain meds kick in before I can go to work. I am so tired I spend my lunch sleeping in my car? Guess what ? She didn’t have anything to say.
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 :P)
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 :heart:
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”
I have been suffering from this wretched condition for the past two years post partum. For me the most heart rending thing is my unability to carry my 2 year old daughter or play with her actively. I am currently undergoing Ayurveda treatment(Indian traditional form of treatment) which comprises a strict diet with several restrictions (terrible for a food junkie like me!) apart from medications, massages etc.
I feel frustrated because I am just 29 year sold and i have the so-called old-man’s disease. My family keeps my condition a SECRET due to the taboo attached to RA.
My doc has assured I will be cured if i follow the diet, exercise and medication she has prescribed. My fingers are crossed in prayers. I want to enjoy every momment of my life with my little daughter. Just for that i want to defeat RA.
🙂
Have you read the blog of Dr. Akerkar in India – click here? He is working to fight this taboo. There is not a diet that will slow or prevent the damage of RA. I really hope that your RA will go into remission, but it is more likely with the right medical treatment. RA is not an old-man’s disease. It strikes women of child-bearing years the most. It even strikes babies, so I guess that is another myth. I know how hard it is with a baby. My RA came on stronger after the birth of my last baby – it is so sad when you cannot lift or feed your baby. Bless your heart.
I have been living with pain for so long now. Two years ago my appendix burst. I went to the emergency room and told them I was extreme pain. I was eventually operated on. I awoke to my Doctor standing over. His words were, ” You were in bad shape. Your appendix burst.” I said, “Yeah I hurt. That’s why I came in.” And then said, with tears in eyes, ” You never showed how bad it was. I’m sorry you had wait so long.” I told him I’m living with pain everyday. He touched my forehead and told me i was a strong woman.. I wish others would know how strong I am. I feel so weak with this damn disease.
That is a good example Rachel. It reminds me of the breast cancer story – same problem – we are so used to extreme pain. https://www.rawarrior.com/living-with-a-spouse-with-chronic-illness-part-1/
Oh Kelly. That is enough tears for one day. I had not read that before. What a cruel and horrible thing this RA.
Dear Preethi,
Uncontrolled RA is a wretched condition indeed. It is definitely not an old man’s disease. In fact, studies have shown that Indian RA patients are younger than the western counterparts. We have two peaks in the onset of RA in India. One at 20- 30 years age group & the second peak is at the 40- 50 years age group. The disease has a tendency to start/ flare up after delivery due to the hormonal changes.
There is a definite treatment for RA & the disease does go in remission. Why dont you have a look at the blogposts Conquering Rheumatoid arthritis: http://t.co/gDMpW7P &
Do all patients with Rheumatoid arthritis fare badly?: http://t.co/XV25wbQ
Believe me; time is function in RA. If you have taken ayurvedic treatment for quite some time & not finding sufficient relief, you need to take a ‘stop-loss’ decision asap. See a Rheumatologist asap. We definitely do have effective treatment for RA.
Hope your RA goes into remission at the earliest. If you can tell me your geographical location, I can assist you locate the nearest recognized Rheumatologist.
Knowing the long term course of uncontrolled RA, it is heart-breaking to see somebody not getting access/ initiated on DMARDs in today’s age.
All the best.
Awesome article.. I do not want sympathy either all the time but maybe just a better understanding of the disease to my family. I will share this article with my mom. PS I also had a kidney infection and ignored it a few days and ended up in ICU a few yrs ago.. Be careful!! 🙂 Lisa
I think there is no sympathy for us RA victims, because its something that can’t be seen visibly. We feel the pain inside and there is really nothing for other people to see. I feel like people think I’m a baby because sometimes it hurts too bad to walk.
What living 49 years with RA has taught me:
1. Everyone experiences it differently.
My diagnosis in 1962 solved the dilemma of “why are my wrists sore and rigid?” My wonderful doc talked with me, listened to me, researched and we learned from each other.
2. Pregnancy may eliminate your symptoms. Enjoy the break if you are so fortunate.
3. Leave the physician who thinks he/she must be in charge.
4. Deformaties may develop suddenly or slowly. Find out how, and if, surgery is a good option for you.
5. Other people may under estimate your abilities. Reassure them with word and deed.
6. Use every way possible to get and stay physically strong. It increases all your capabilities.
7. Investigate new treatments. If they seem out of your financial reach, contact the pharmaceutical company. There are programs available to assist you.
8. Most important: You are not your desease. Believe it and live it every minute of every day.
9. Accept help only if you really need it. If you don’t, decline it very thankfully, assuring the person that should you need assistance with something, you will remember and call on him.
10. Stay busy, happy and assured, even if a little Sam-E or a pill from your doc is occasionally required.
11. Overdoing once in a while is good for the soul and gets the job done. But—I stress–but–only once in a while. And if you must push, take short breaks, then a good rest when you’ve accomplished your goal.
12. Love others generously in any and all ways you are able. Now–don’t over do that, either. Smother is not love. Be genuine and considerate on whatever levels seem appropriate for the relationship, close, family or passing acquaintance.
Live, laugh, love.
Thank you, Maggi. Very nicely done. The advice of a veteran is always valuable.
I am so thankful for this site. I have been diagnosed for over a year now with some success at times and then setbacks….always wondering if it was something I did…too much activity or something I ate…dairy, gluten…I am currently on methotrexate and prednisone…have tried humira, arava and enbrel….waiting on approval for simponi. I used to work 40 plus hours a week in a field where you only spoke positive about everything….until this…it knocked me down to working very little and all the people I worked with just couldn’t believe I couldn’t push through in spite of my pain and tiredness. And of course, they knew people who had ra and worked just fine….so what was my problem.
I still have alot of fatique-every day of the week…pain travels and now having trouble with my eyes and headaches…I don’t want their sympathy either…just please don’t judge me…especially if you do not have ra or have never tried these medicines and experienced their side effects.
I just had my old director text me and ask how I was..I was having a really rough day so I decided to tell the truth and let her know just how I was doing….the response was Hmmm lol
First of all, how is everyone? And thank you for this website.
I am one of the few males who suffer from ra. Its always funny(not really)
to see peoples reactions when i try to explain ra. I even had a doctor, when i told
him i had ra, reply to me “RA? Thats a womans disease!” i wasnt sure if he was
attacking my masculinity or minimizing women. Anyhow, most people tend to focus
on the arthritis part, being ignorant of the rhuematoid half. They figure EVERYONE
has arthritis, so get over it. I try to explain it, but their eyes usually gloss over. Thank
you again for your information, and i will keep you all in my prayers.
No sympathy because “you look fine.” My mom dealt with RA for 30 years. It was heartbreaking to watch her get weaker and see her hands and feet distorted. Her not being able to hold on to anything; pain in her feet to walk; pain if you touched her. Pain that didn’t go away, even with the RA drugs. Unless you know someone who has suffered it; people just don’t understand. I don’t think the commercials for RA drugs help at all. Those people are all so happy and carrying on like nothing is wrong. Not realistic.
So true Debra. Not reality for most people living with the disease. Unfortunately.
Kelly it’s so nice that I found this web site, thank you so much. I was diagnosed with RA 3 years ago but before that I lived in severe pain all over my body for years. Because I was young doctors just ignored the fact that I could possibly have RA. One day a doctor said that it’s impossible to have such strong pain everywhere and suggested me to go to psychiatrist. The day I found a great rheumatologist I finally felt that at least somebody cared. He diagnosed me with RA and the greatest dissapointment was that my family didn’t even get it. Of course I was used to the pain but I really needed some sympathy from the relatives. They don’t get it till this day. They live in another country but sometimes I just want to hear how my joints are doing. Only very close people know that I have RA but I know they don’t understand I actually LIVE and survive every day. Couple of close friends who know what I deal with are being supportive but I feel they don’t understand the level of pain (and my tolerance for pain is very high but I don’t have to explain it to you 🙂 Sometimes I just want them to understand that I’m extremely tired from pain and just tired of being sick. I have read all the comments and they are amazing and helpful! I agree that people don’t see RA on our bodies so they think we are ok. And we are real troopers who can smile even if we are hurting. I’m very happy that I found this web site today and really thankful to Kelly because I felt so lonely with my RA that maybe some people can’t imagine. I feel really scared sometimes of what will happen in the future because I don’t have kids yet and really want to. I already see the deformation of my fingers and thumbs, knees, sometimes I can’t get up easily and I’m just 28. Thank you again for giving me sympathy with all your comments today and for letting me finally express myself 🙂
I believe people have possibly had a kidney infection, but do not have RA therefore, could not possibly begin to imagine what it is like to live with it. I must put my hand up here and say this: before I had RA, I thought people who had it got bumps on their fingers and thats it! Totally did not know anything about it and I thought it happend to old ladies who knitted a lot. I now apologise for those thoughts but I didnt know any different. I certainly do now! If a woman hasnt been through child birth, how could she possibly know or understand what its like? Its impossible.
I am newly diagnosed as of a month ago but have been struggling with the symptoms for the last 2 years. The part that annoys me the most is when people ask what’s wrong and then tell me basically it could be worse…
I got to the second or third comment and I just started crying hysterically. I have had this torturous disease for just over 2 years now, and I am to the point of needing a therapist to deal with the overwhelming LACK of sympathy from family, friends, coworkers. I was diagnosed with lupus 17 years ago after my daughter was born. After 18 months of medication, it went into remission, but a year later I developed Graves Disease, and it was so aggressive I had to have the radioactive iodine treatment to shut my thyroid down. The lupus came back again after that, and then I was diagnosed with RA. I have been struggling with pain for years, and at this point I don’t even remember what it feels like to be pain free. I try to smile and cover it up because most people seem to get so uncomfortable if i mention that i’m hurting, but really, no matter how much I try to kindly and nonconfrontationally explain my situation, I just get the awkward silent treatment. Or I get the “oh my back/leg/foot/whatever hurts too, I know how you feel” Or the “oh I have insomnia too, I never get enough sleep either” comparison game. I am at the point where really I think I would just be happier alone. I no longer want to socialize at all. I am tired of worrying what people think of me. I would rather be alone. Is that sad or what?
I think the only thing that will help us all is for RA to be made as big a deal out of as ADHD, breast cancer, autism, etc. Have programs about it on news shows like 20/20 or Good Morning America, or shows like National Geographic, or especially Dr OZ!!
I was diagnosed when I was 26, and am now 52; so half my life. When I was younger, people would say, “I thought only old people got arthritis.” I’d say that even babies can have it. I guess no one knows how it feels unless they have it themselves — the pain, the exhaustion, the idea of being on medication for most of your life.
My RA is newly diagnosed. I am 57 yrs old. So my heart goes out to all of you who had it at a younger age. My RA is in my neck, my shoulders, my arms, my inner thighs, my fingers, my toes…It is throughout my body CONSTANTLY. I can no longer put a shirt on without struggle. To get in n out of car is so painful. Turning the wheel has to be done swinging my one arm. FOR ME RA pain can not be DESCRIBE. It is like nothing I ever felt before. When I heard someone had RA I never thought of this type of suffering. I think the point she is trying to make is those of us with RA experience debilitating pain some of us on a daily bases n yet no one seems to really under just how painful n debilitating it is. I think her point is not enough AWARENESS Is given to RA n just how painful it is. This pain goes THREW my bones n causes me to be so fatigued. I have no life ANYMORE. I never realized what RA was the the AGONY it causes. Most people don’t.
I agree it’s pain like nothing else & there are hundreds if not thousands of patients who have said so on this site. And yet the public and the medical profession seem to not know this, as you say.
One reason is that it is much less severe in some people and they can still function. Instead of realizing their diseases are different, people (even doctors) usually assume that people like you who are in a lot of pain are just wimps.
Yes getting in and out of the car is so hard. I often have no choice but to use my hands to pull in my leg.
Why is there no compassion for RA sufferers? Simply put, compassion in our world is lacking. Yes, I got little compassion when diagnosed and those crazy statements like “exercise will help.” Try exercising when all your lower extremities are flaring (and you with REAL RA folks know what I am talking about). Our culture values physical strength and beauty to the point that billions of dollars are made promoting them. So then, when your strength is diminished by RA, you are not acceptable. I pray a lot. Our world is becoming depleted of compassion and understanding for many who suffer any kind of illness. Keep praying, a lot. He will hear you and He knows your struggles, and He has compassion.