What Is it Like to Live with Rheumatoid Arthritis? Part 3: Communication Failure
I’ve failed. I’ve been writing about Rheumatoid Arthritis for a year and I have not been able to explain exactly what it is like to live with Rheumatoid Arthritis (RA). Sometimes, I think that I need to say it louder or use bolder print or stronger adjectives.
One problem is that I try to be nice. But RA is not nice. So how can someone get a clear picture?
I didn’t want to be called a drama queen, so I’ve held back. It’s not that I care what people think – I just want them to listen to the message. Sometimes, you can overwhelm RA unbelievers with too much information and they tune you out.
The Disconnect about living with Rheumatoid Arthritis
The last few months, I’ve been trying to figure out why there is such a “disconnect” with RA. People who live with RA frequently say, “No one understands.” In one of my first RA blogs, I mentioned “the wall” between RA and the non-RA world. At that time, I believed that the wall was mostly due to ignorance. However, the more I learned, the more confused I got.
When I read books or articles about RA or watch commercials about treating RA, I see a different disease than the one I live with or see in others I know. So, I started to wonder what the doctors see. Do they see the RA that we live with? What do they hear when we describe it? Or do they hear Charlie Brown’s parents: “Brwa bwah rwa. Pwah bwah arw”?
Twice in four years has a doctor ever allowed me to describe some of my Rheumatoid Arthritis symptoms. But I still did not feel heard. And no one else has ever asked me what it is like.
Unsolicited, here is what it’s like to live with RA, as briefly as I can say
All of my joints are tender to the touch. At any one time, several joints hurt with sharp pain that is similar to an injury. If I’m alone, I cry out in pain. If I’m not, I just breathe in and pray.
My joints are too weak to do most things. I stumble and drop things. If I use a joint to do anything, then it quickly becomes tired and useless and painful. Everything I lift is too heavy. Everything I do is a struggle. I try to look as normal as possible.
As I breathe, my sternum joints hurt. My stiff jaw makes eating certain things awkward. I eat meat with my fingers instead of using a knife. The sound inside my neck of crackling at the base of my skull never stops. It scares me.
When I go to a store, I cannot keep up with my kids. They look on in horror as I am shoved out of the way while I struggle to navigate. Senior citizens often run the shopping cart into me out of impatience, complaining that I did not get out of their way.
I have a low-grade fever a few days per week. Most days, I feel like I have the flu. I fight nausea as I struggle to inject chemotherapy (methotrexate) every week. I have said, “I’m sorry I can’t do that. I have a disability.” And had someone laugh out loud to my face in public. More than once. I never know when I will lose my voice or for how long.
Even though I never tell anyone what I just told you, most people I know judge me. They let me know that they think I’m a hypochondriac. That’s one reason I don’t mention the list of my other diagnoses like most healthcare bloggers do.
Postblog: Rheumatoid Arthritis is a heterogeneous disease, meaning that yours may differ from mine. Also, mine may differ from mine, over time. This is the nature of the disease and not proof of malingering.
Coming up on the blog: We’ll ask more about what doctors think RA pain is like and why they might not hear what we tell them.
Recommended reading:
- Part 1 of my description of RA: What Is it Like to Have Rheumatoid Arthritis: The Usage Principle
- Part 2: What Is it Like to Have Rheumatoid Arthritis? Part 2: Why Don’t They Tell You?
- My confusing quest: My Quest for Answers to Questions About Rheumatoid Arthritis
- My first thoughts about the wall: Managing Rheumatoid Arthritis: Transparency and the Wall
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Maybe you should say more frequently about how it is to live with RA…maybe you should describe how everyday you have no idea how you are going to feel, how much pain you have or for that matter different types of pain you have. How can one body deliver 4 different types of pain? RA never ceases to amaze me & I’ve lived with it all my life either with my father as i was growing up and then with myself and my husband. He was misdiagnosed and has now got Ankylosing spondylitas and his rheumatologist took one look at me and stated he didn’t think i had RA but he’s not my specialist (yet) so I don’t know whether i have got RA or not now!!! Grrr. Life with RA is awful when all is said and done and some days/weeks/months can be very depressing living in an able bodied world!
I think you did a good job describing it. Thanks.
Life with RA can be extremely hard, like you say. And fighting depression is just one more battle for us since RA does not usually get better, & often gets worse as the disease progresses. It’s hard work to fight against all of this every day. I am so glad I am not doing it alone, but with all of you.
I hope you can get the answers you need soon.
Well Kelly you have just described my RA and my life…..it is hard to explain to my 14y/o stepson why I cannot do something today that I did last week and may be able to do next week. And he has come to his own conclusion that I am making it all up and goes out of his way to make life more difficult. My husband flip flops between wanting to wait on me hand and foot to looking incredulous when I tell him I cannot do something that is usually so easy for someone…like drive myself to my RA appointments 90 miles away by the time I get there visit the Dr. get my remicade and start to head home I am exhausted and falling asleep so I always arrange for someone to take me when he can get off work he willingly does it but he really does not understand why I cannot take myself and usually wants to go shopping or something while we are in the city.
Yes, things that “are usually easy for someone” & it’s just impossible to believe us when we say, “No, I can’t.”
I remember when I was explaining to some people that my wrists were so bad, I could not hold onto anything at all – not even a glass of water. I tried to describe why I had to take methotrexate. They reached out & handed me a bottle of beer. I just sat there. I said, “No, I couldn’t hold onto that even if I could drink it.” The reaction was not good.
It probably doesn’t help that some people with RA are like me, doing well on oral methotrexate and experiencing minimal side effects, able to do *most* of the things I did before if I take good care of myself, which is to say, the one thing I can’t do anymore is go 100 miles an hour, all day, every day.
When I was sick last winter and had to stop methotrexate for a few weeks, I felt exactly as you describe. I’m so sorry your treatment is not getting results like mine. When I talk about having RA, I always make a point of saying I’ve been very fortunate to respond so well to the treatment. I don’t want anyone to think all people with RA live as I do.
What a gracious thing to say.
We do not begrudge your success! We just need to be believed, so we can get the help we need – like support to find a cure. But, you make good points.
“I didn’t want to be called a drama Queen”
This really nails it on the head for me. I’ve been recently diagnosed with RA, and most days I’m doing ok but I have had a few really bad days but I’m embarrassed to ask for help.
It’s hard to think of myself as being “sick” when it’s not consistent.
I came across your blog last night and I’d like to thank you for putting together such a comprehensive guide! The links to the exercises, diet etc are fantastic.
Welcome, Agent Orange, we can use a few more secret agents in this war.
Someday, the science will “prove out” what we live with – what you describe. But would be nice to just be honest & believed in the meantime. It’s really not the same every day. We really just want to tell the truth and do as much as we are able, but not do what we are not able… Sometimes doing more has a price afterward, but we want to choose…
I am always at a lost for words when it comes to explaining
what RA is when ASKED, for me you decribed it to a tee….and sometimes when other’s make less of what I am going through at the moment, I draw on another statement you
made in an earlier blog, If RA wasn’t a serious illness then
why would they treat us with serious drugs……Thank you
for this blogs…sometimes it is my only marker of what RA really is….Other’s just don’t understand!!!!!
Thanks for this post. Although my family understands about RA (my sis and brother both have it too) – and my hubby and kids have seen me live with it for 14 years now – anyone outside of that circle has NO CLUE about RA and what we all deal with. Most of the time people will say to me “Oh I have arthritis too” – Yeah they mean OSTHEO but they have no clue about the complete differences between the two.
I feel your wrist pain. I just told my rheumy I wanted to cut off both hands above the wrists – and he thinks I was joking. Not joking – I cant even open a ziplock. I cant open jars, button blouses, nada. So what good are these stupid, mangled hands for?
Sorry I was venting! But I totally see your point. Even Dr’s really do not know what we go through. How about hair loss? When I try to tell my Dr about hair loss it is like they do not care – well damn it I am 46 yrs old and I care!
And I so understand your flu-like symptoms. I have that and fight fatigue daily. I feel guilty always wanting to lay in bed when I know I have my mother and wife duties to perform.
I truly hope you get better. I hope people can be more compassionate. I do not tell people I do not know about my RA either. But sometimes they ask because my hands are so mangled and awful looking. Then I get embarrassed. How dumb is that – like its my fault I have RA.
Hugs and Prayers!
Judy
Thanks once again Kelly and to everyone here for their comments. This has me crying. Guess it’s just hitting so close to home today. I’m TIRED of the pain, of the fever and chills, of the fatigue, of the uncertainty, of being stuck 8-10 times to get an IV in when I get Remicade,& tired of searching for a successful treatment. (And this list doesn’t include my other health problems.) I’m blessed with such an understanding family. My 76 yr old parents insist on taking me to my rheum appts/remicade txs that are approx 100mile or more round trips because they know how exhausting it would be for me to drive myself. But there are SO many who I’m sure think I’m a wimp. So i’m glad I can vent here, but count my blessings too. Thanks Kelly& everyone else for your support. Just having a bad day.
I’m fixing dr patient communication failure today by strangling my dr. It’s all in love… Lol
Thanks for this post. It just helps to know that there are others who experience the same things and that I’m not alone. On my worst day I cannot lift my coffee cup with one hand, I cannot bare to have someone hug me for fear they’ll squeeze me to tightly, I avoid shaking hands, I can only hold a baby that is passive and only if someone places it in my lap… People look at me strangely sometimes as if I don’t want to pull my weight not understanding why a 36 year old sometimes can’t do these things. Even the people who claim to understand really don’t.
You said: “as if I don’t want to pull my weight…” As if a busy mom suddenly decides that putting on her baby’s socks is beneath her. COME ON folks!!!
People need to think: how likely is that? That’s ridiculous.
Kelly,
Below is a little encouragement a friend recently gave to me:
“Extraordinary people survive under the most terrible circumstances and they become more extraordinary because of it.”
~ Robertson Davies
I agree, this is Kelly.
Kelly, I’m sure you could say a whole lot more about this, and so could the rest of us. I wish docs could just read minds! What has been your RA drug journey so far? Still having fevers doesn’t sound good and I hope you’ll find something that controls things better for you.
Good question. Today’s blog is my reply. Just click here.
Kelly, I almost cried when I read this today…wanted to print it out and pass it around to a few people (well, mail it to some). (I did post a link on my FB page!!) I had been having a pretty pain-free time the last few weeks, but RA hit me like a ton of bricks over the weekend. Still not sure how I survived our Super Bowl party last night, but I did it. Got up this morning, shuffled my way through getting dressed, had to let my hair dry on it’s own and didn’t even try to straighten it…and God bless whoever invented the electric toothbrush!! When I got to work, I desperately needed something for pain, so I got a drink from the machine, got back to my desk and I couldn’t even grip the lid enough to open it. And again, God bless my friend Jamey for not giving me a hard time when I walked over and asked him to open my drink!!
Amy: I love that quote! I’m writing it down…
Sending all of you virtual hugs, because I know that I couldn’t handle the real thing right now…
I sat here and tried to imagine what you feel with all joints tender and painful. I have some like this,It scares me to think of all of them. I am amazed at learning how RA is so varied. My cousin is a caretaker and once took care of an elderly woman with RA. I thought she understood until one day she said “I have been praying for your hands”. My doctor only examines my hands at my check-ups. This makes me wonder. I had a very discouraging visit last time. He said “you should not have any joint pain, your crp and sed rate are within the normal range” (albeit barely). He squeezed near my elbows and one shoulder and asked me if it hurts. It did, but I have elbow tendonitis and my shoulder is damaged from RA. He said “you have Fibromyalgia. I couldn’t believe he thought this was a proper way to diagnose Fibro.and I said so. I don’t think he likes me anymore.
Ronda, I hear this all the time. I need to address these issues in a post.
Kelly, you have far from failed. You have supported, inspired and informed many of us RA’rs. I can’t begin to tell you how grateful I am for finding your blog. You have given us information that was valuable and brought together a group of people that needed that information and support from each other. It is extremely hard to describe to people what we deal with and you have helped me find the words and not feel like I am CRAZY in the head. You and everyone else on this site. The pain is endless and the illness is relentless at times, but knowing I have a place to go to read other RA’rs experiences/symptoms or write about my own has been my sole support right now. I know how you feel though, it can just wear us down and until RA gets a better understanding from “no-chronic illness” people and even our own doctor’s, we have to keep getting it out there the best we can.
Kelly, You have not failed, but I know what you are saying. People don’t understand. I am pretty lucky because my RA is in remission for the most part right now, but I went through the low-grade temp, every joint in my body hurting at the same time, having fingers and toes that looked like sausages, being afraid to go to sleep because I would be so stiff by the time I woke up I couldn’t move. Although I tried not to cry, because of the pain I would at times break down and was told I needed an antidepressant. Understanding, huh? Now because I’m not in as much pain people assume I’m cured. Helloooooo…no cure….thank you very much. Most people just hear the “arthritis” part and then go on to tell you how bad their knee, leg, toe, whatever hurts and that is supposed to make me feel better (osteo is NOT rheumatoid), so most of the time even if I am hurting I don’t say anything because I just want to try to keep it upbeat. It is hard sometimes, but I think what doesn’t kill us will make us stronger…people with RA are a lot stronger than we get credit for sometimes.. Amen.
Thanks, Bert. Great points especially about the “anti- depressant” comments and our not saying anything about pain most of the time.
Hey! I wonder if we could say something about the pain more often, if we’d cry less when it gets so bad…
Sometimes it hurts so bad we do have to cry. But tell that to those who write the studies I’ve been reading about pain perception. Aggravating.
Thanks for writing this post, Kelly. It’s good. ~;o)
This is a great description of the daily struggle with RA and other auto0immune diseases. I actually had a close friend call me self absorbed today and go on and on yelling at me that I talk about my health problems too much and she doesn’t want to hear it anymore. Obviously she is not a real friend, or she never would have said any of this.
I’ve been praised by everyone else in my life at how well I handle all of it, but this person resents me somehow. We don’t need people like that in our lives, we live with enough struggle.
I know how you feel about the “self absorbed” comment. Ouch.
Yesterday, I was reading articles about how people deal with chronic pain and I saw a definition of a hypochondriac: it said you are one if you talk about your illness, and read about it a lot, and research it, and think the docs might not get it, and think that no one understands your pain. That was a serious scientific website. That definition makes almost everyone with RA a “hypochondriac.”
Ah, shame on me for not exploring the tabs at the top! I finally found your onset story. You are in a more unique situation than many of us because of your Hashimoto’s history, especially from childhood. It’s not uncommon I guess for both to occur in an individual, much less run in families (my aunt has that and celiac), but it sounds like yours has been more difficult, and I wonder if the Hashimoto’s has an effect on your RA or your metabolism of the medications. Hashimoto’s itself can present with an arthritis and swelling too, but I don’t know much of the details on the effect the two diseases can have on each other.
What causes that popping and cracking at the base of the skull? It sure intimidates me too. My rheumatologist said we don’t worry about popping noises without pain. And how about hot flashes? I never know if they are from RA or methotrexate but they are overwhelming at times. Thanks for sharing so openly. It is very helpful in many ways.
Kay, sorry, no way I can know what’s going on in your neck. But, I can say if it’s bothering you: Get it checked out. It could be RA or OA or a number of other things.
If you do have RA, and have spine symptoms, chiropractic adjustment can be risky. Neck MRI’s are hard, but if it gets painful, that is one way to try to find out.
Same with hot flashes: too many causes for a guess. If it continues, I encourage you to keep pursuing to find an answer.
[...] without the writings of Kelly Young, before my diagnosis I had a bit of an idea, from a few diagnosed RA friends, what their days were [...]
Gosh! Here I am once again being called a HYPOCHONDRIAC, guess I’ll just learn to live with that one! LOL I mean in reality it doesn’t hurt near as bad as my RA and all the other things that I’m too tired to type, if that’s all they’ve got then they need some more”edumacation” as a sweet friend of mine says. When God made Solomon King He asked him what he wanted and Solomon said “Wisdom and Knowledge”. I guess ol’ Solomon was a HYPOCHONDRIAC too huh! Knowledge is power and that’s what they DO NOT want us to have.