Can We Find Similarities with Rheumatoid Arthritis?
Very often with Rheumatoid Arthritis, we emphasize our differences. It helps the newly diagnosed to get over the shock of living with a new symptom every day. It helps explain a fickle disease that is quite unreasonable and undemocratic in its attacks. But what about our similarities?
Common threads and similarities in Rheumatoid Arthritis
As Bob West, our geneticist friend has hinted, there may be some different strains of RA. And we know that we are all different genetically, which affects how our bodies respond to treatments. But even with the diagnosis limitations that we have today, we who live with the disease find common threads.
What is today called Rheumatoid Arthritis is recognizable to us. In a public place, we notice RA in total strangers who don’t look sick because we recognize tell-tale signs. We meet a new friend who has RA and it is like we have found a long lost sister and talk for hours. (I’m so thankful for my #rheum mates it’s hard to put into words…)
I’d like to point out that there are many aspects of this Rheumatoid disease that we who interact in community understand to be common to the disease which are not reflected in academic literature. For example, we hear many had first symptoms in their feet, but hands are always stated to be the main point. Hand joints are given preference in diagnosis. Mystifying. That’s one of the reasons I built this site. And it’s the reason I’ve been so adamant that the patients’ voices must be heard.
Things that are said in our community fit nicely with the little that has been written about RA that comes directly from actual patients. We never read those books before RA diagnosis, yet the similar experiences are uncanny.
Two examples of common RA experiences in literature:
- From Out of Joint by Mary Felstiner: “In one decade I’ve lost my guarantee of good health, lost fluidity, lost ease in the physical acts of parenting, lost a fair practice of equal tasks, lost nouns like energy and swiftness, lost my lifelong singing voice and even a speaking voice free of crackles and pops, lost my elbow grease for vacuuming and yard work and tearing full speed down a swimming lane, lost any assurance I could run from threats, lost my trust in feminist to name my woes, lost my reliance on medicine and also in alternatives, lost my remission, lost my pregnancy. Amid all the losses what can never be found again is my old sense that each loss must be a fluke,” page 37.
- From a PhD nursing thesis by Dianne Roy, The Everyday Always-Thereness of Living with Rheumatoid Arthritis: “They are accepting the thrownness of their situations and living with the balance of what is possible today and what is not possible. The strength in dread is in accentuating the positive possibilities of now, of appreciating what can be done and not dwelling in those things that cannot be done,” page 174.
I’ve seen it happen a thousand times on this blog. Or someone sends me a letter asking how I know their life so well. The answer is that I’ve lived it.
Have you ever had one of those experiences? What are the things that make us similar? I’ll start the list and you can finish it.
- Making continual adjustments to deal with disability or pain.
- Hiding the severity of pain that would make others faint.
- Having family members or neighbors or employers who don’t think we’re very sick because our disease was misnamed.
- Having a heroic optimism that might make Pollyanna look cranky.
- Being told by a doctor that our disease pattern is not typical or that we look ok.
- Swelling without pain or vice versa.
- Having to take medication that scares us.
Recommended reading
- RA Reality Versus “The Lie”
- Fighting Rheumatoid Arthritis Depression
- How Rheumatoid Arthritis Pain Affects Women’s Lives
Hi Kelly,
What you’ve said is true…though we’re different genetically we RAer’s have common experiences and that i think is very helpful. Though we got discouraged & frustrated at times, we have each other and we get encouraged and we face the world again with smile on our faces… 🙂
– having always to hear that “i’m too young to be having arthritis.”
– after telling people that i have RA, they think that it is the same with OA or that it’s just arthritis & pain relievers would do the trick (as if, well, not all the time ma’am/sirs).
– always finding myself trying to explain RA.
– having to try different treatments.
– braving up to face whatever (especially needles).
– having to visit the hospital frequently.
Hoping all is well with you…God bless! 🙂
Hi Kelly,
My husband calls me Pollyanna,although the longer we’re in this RA journey (and we’re in it together) the less I feel like Pollyanna, but the more we need it!
I am fortunate to live in Australia where it seems our medical system has very few medico’s who doubt my disease, the path I have chosen to deal with it, or who don’t show a great deal of compassion for my situation. I feel very fortunate.
My addition to you list would be:
Choosing to follow my own instincts about treatment rather than blindly following doctor’s orders.
Finding that I have much more in common with my 84 year old mother in law than either of us ever imagined! – Things like bunions and corns and not being able the kneel down or see books on the bottom shelf at the library.
Developing techniques to avoid shaking hands
Planning the day around one major activity – grocery shopping or vacuuming but not both (who am I kidding – I can’t vacuum any more!)
Realising that I can’t do things any more and being constantly surprised by what I can do if I figure out a ‘work-around’
Having great friends who make the effort to understand and that’s good enough for me.
Cheers
Tracey
I especially like your additions “choosing to follow my own instincts” and “developing techniques to avoid shaking hands.” I am newly diagnosed and am starting to figure out that thing about my instincts versus what the doctors say. Also, not being able to shake hands is actually one of the things that saddens me the most about having RA. If you’d be willing to share some of your “techniques.” I’d love to know them. It’s something I struggle with a lot.
The common threads the bind the ra quilt….
-Clothes that have no buttons, zippers or hooks.
-Shoes that look like we have gone to the “green side” of the world but in fact we wear for comfort (and yes sometimes they look like Granny shoes but for which I now have an immense respect and fondness for)
-A resolute respect for the shower for a number of reasons: it relieves the pain of ra and it doubles as a muffle for sobbing
-Love for froozen things in the grocery store even though we know that fresh is better but we also know it is all a trade off: joint stress vs. healthier eating
-A respect for grey. It is now my friend and not my enemy. And yes, it is because I can no longer dye my own hair or use the hairdresser’s sink due to neck damage
-A respect and love the for the simple things in life like family, friends, and what we can still do…whatever that may be
-Hope! This is the thread that binds us all the strongest. Without it we would be lost. With it we are strong.
Waking up every single morning for the last two years, opening my eyes, and feeling like I’ve been run over by a truck. It’s like the movie Ground Hog Day. I pop an extended release pain pill and go back to bed until that kicks in. I always check my elbows in the mirror first because if they look like crushed maraschino cherries (which they almost always do), its going to be a painful day. Then, I put a smile on my face (so much prettier than the pain grimace I want to wear), hobble down the stairs, take a shower, get dressed, put my makeup on and do my hair, so that I look like nothing is wrong.
Just wait a few more years Anne…On weekends when I don’t have to go to work, I skip showers, don’t get dressed, don’t do my hair or makeup, and just rest the entire weekend so I can make it to work the next week…I am a teacher and I did this all summer long just so I could rest up enough to teach another year…
Jewell
That’s me too. On weekends, no shower, hair or makeup, and only sweats. I rest so I can go to work all week.
Losing friends because they do not understand we can’t do everything we used to.
Molly, I hear that one loud and clear xx
I have been blessed with a great medical team (no “you look fine”s)and a fantastic supportive family. My RA seems to be mostly under control but the pain is near-constant. The level of which, I am ashamed to admit I share with noone save my pain specialist and my Rheumy. I think it would scare them to know how much I hurt pretty much all the time… I really don’t want to see their reaction, so I don’t talk about it…
I still don’t know anyone in person who battles the Monster. I really would like to. Though quite frankly, I am not sure why. Weird?
How can your disease be considered “under control” if you are in near constant pain? This is a question a lot of us have and are baffled by. I am with you too-I don’t know anyone in person with RA, only on the net.
* Learning to live, work and play with limits
* Having to be ‘ambivalent’ about pain to spare the queasiness of others
* Learning to laugh in public and cry in private
* Trying to believe that there is a life lesson in RA even when you really can’t
* Learning how to tell your ‘RA story’
Hi Kelly, Thank you for this post. One that you mentioned is what I’m realizing (though my journey has just begun with this RA) is that it is better to just not talk about it. If I talk about hurting then I hear from others how much they are hurting more than I am. Or some tell me I’m complaining. Or, they give me a remedy that they are sure will help me. Sometimes I know we need to speak out loud about it but often I am finding it is a waste of time and could end up being very discouraging. Am I wrong in this? Have I already become jaded? Or I say I have an appointment with the RA doc and friends will respond, Great, you’ll get what you’ll need and you’ll be fine.
Is this the way it is with everyone?
I feel it is just because they can’t relate, they truly don’t get how much worse RA is than OA. I am afraid I was the same before I was diagnosed. Add in the fact that we look normal, it’s just a tough one for folks to understand. Now if your family and close friends don’t get it, that’s when I get ticked! They know you and they know better.
Maybe next time you could tell them that if they knew the small percentage of suffers that get a lot of relief from these so called miracle drugs, they would be appalled. They are almost as bad as infomercials, might work just enough to keep from being sued for false advertising. Add in the long list of some really nasty side effects, not a lot to be overjoyed about. That’s my plan. Educate them, a little at a time.
Hi Jane – I think you just listed a bunch of our common threads as RA’ers 😉 It is normal to face a lot of that, but over time, like Becky said, you can educate others. You learn who you can say what to, but it remains a tough balance to be honest about how you’re feeling without feeling like you’re complaining or having others take it that way. As some of the truths about RA begin to sink in, some people begin to actually listen when you share your own trials. So, don’t get discouraged, but realize that it takes time for others to understand.
I have noticed a resiliency that, if you think about the losses that the disease brings, makes us stronger than most people. We are more able to cope with setbacks and appreciate the situations that we CAN resolve.
• Dreading “shot” day. After 8 years, I still hate needles.
• Pushing myself to keep moving. Somedays the fatigue is worse than the pain.
• Making plans that include the words “if I feel good that day”.
-Our lives will never be “normal” again.
-even so, we must push ourselves to live as normal as possible, ignoring pain and fever, when if others felt this way, they would be in bed resting.
-Not knowing what each day will bring, in terms of ability and pain. It always makes me think of Forrest Gump when he said “Life is like a box of chocolates, you never know what you’re gonna get” RA is like that too, but everyday! We can’t predict how we will feel each day. We may wake up able to do some chores and errands, or we may wake up unable to move from the couch or bed.
-Realizing we have a very serious disease that is not taken serious by others. In this, it is especially disheartening to feel like we have to prove we are sick.
-taking a tubful of meds everyday that makes others think we take too much, or are addicted, as if it’s our choice.
-having to take pain meds everyday to have some “quality” of life and function.
It still amazes me that each RA sufferer can have what seems to be a different RA than mine, such as symptoms, affected joints, lifestyle, etc. RA can be so complex and subjective.
It makes me sad and frustrated to constantly hear non-RA people compare their “normal” aches and pains w/ RA–even when the only thing they know about me is that I have RA.
Even after five years of dealing w/ RA, some of my closest friends and family don’t “get it” and are either in denial or are completely non-empathic. Clueless or tired of hearing about it? I now cope best by not sharing my pain and symptoms.
Thanks Kelly for your persistence and dedication to the RA community!
RA is tap dancing on my vocal chords like sammy david jr. I sang caberet and love(d) it. I am now going to record a demo during a low flare so that I can sit back and watch it when all I can do is whisper!
Hate having this awful disease I am 45 but often feel much older even though in my head I am still 18. Was on Methotrexate injections but I couldn’t take the thought of taking it anymore so have gone back on tablets they don’t work as well for me but it’s better than the fear. Why do people always think they are the worlds leading expert on the subject. Having to come down the stairs backwards because it hurts less makes me feel so low. It’s nice although I wouldn’t wish this on anyone to know that I am not alone.
I own a small business with my husband and some of our clients are also our friends. And one of our friends asked the other day how I was doing. My wonderful husband told him I have the heart of a lion but I never know what the day will bring. I am so fortunate that my husband, family, friends and doctors don’t discount or minimize my disease. When I tell my husband how lucky I am to still be able to walk and have a somewhat normal life. He is always amazed at my attitude and will be the one to say, “No, this disease just sucks and I don’t see anything good about it!” And I hug him hard when it doesn’t hurt:)
No longer being able to dance
Never gonna ride hunter jumper again or a horse at all for that matter
Not being able to take long car trips
Never knowing if my body will be up for the social event I want to attend
10 years into this story and I still am not good at knowing my limits – mostly wish I didn’t have them;)
8. Knowing our own darkness well…..and in this way we van reach the suffering of others
9. Watching the light change in the sky when we’re awake and in pain
10. Despite it all…..or in spite of it all….we are renewed….and we go on.
Not being able to commit to helping out because I never know what my abilities will be any given day has been the most difficult adjustment in this battle I began last October. I live in a community that has just been ravaged by wildfires, with many close friends losing their homes. A year ago, I would have prepared dozens of meals, located donated furniture and helped load it on trucks to distribute, played my violin in the concert to be held tomorrow, now made even more meaningful by what my community has experienced. Now I will be relegated to handing out grocery gift cards that my husband purchases.
Ugh- I know what you mean. I’ve always prided myself on my strength and ability to jump in and help, even if it meant physical feats. I’m learning my lesson this week – I volunteered to co-chair a book drive at my daughter’s school and found myself in over my head. I can barely move my arms and having overdone it yesterday. 10 days to go and I don’t know if I’ll make it.
Not realizing that I’ve had a “good” pain day until the next day when I can barely stand the pain.
I never knew that muscle relaxers could make a difference, and kept telling my doctor I can’t really tell a difference — that is, until he told me to stop taking them. And now I wish I could take them again.
I’ve always been a glass – full type if person, and I really hate that I judge my days if they are not as bad as others.
I recently went out to dinner with my family whom I do not see as frequently as I would like. I was in the midst of a fairly minor flare. I could not decide what to order because I was not certain what I would be capable of managing to eat. I finally ordered what I truly wanted, the steak, and my wonderful brother cut my meat for me without a fuss. I wish that didn’t have to happen. I hate being needy.
8. Having to ask for accomendations on a long plane ride. Sitting with feet down ifor so long is so painful!
May I rant about another similarity among those with this disease? In the last two days, I have been told that I can’t have RA because I’m vegan, that I must not be vegan enough if I developed RA, and that being vegan may have worsened my symptoms. I’ve been told that I may have Lyme disease instead of RA (by someone who had only a cursory knowledge of what’s going on with me and asked no questions), and that it was the grains in my diet that caused the illness. I went on an elimination diet after diagnosis to see if foods could be worsening symptoms. They weren’t. Neither did adding them back in cause the symptoms to worsen. I’ve been told that taking a certain mineral might do the trick. I’ve been told I might not believe enough in a cure. I’ve been told that I have to speak positively if I want to overcome this–by someone that I hadn’t even told of my diagnosis until asked a direct question. This is just in the last few days. I’m still only months into my diagnosis, and I know the rest of you deal with this all the time, but I’m finding it difficult. I had a bout with the same cancer that killed my mother when I was 40, and, believe me, no one told me that I didn’t really have cancer or that I caused my own cancer or could cure it all by myself.
Thank you Linda for putting it so well. Beautifully stated.
The ignorance about RA is so rampant that people think they can say these things with a straight face – like it’s true. If diet could cure RA, would we take chemo needlessly? Seriously?
Linda – I absolutely can sympathize with you as this happened to me — with my husband leading the pack, no less. I, too, practiced an elimination diet – essentially, I had to “prove” that I didn’t create disease myself before my husband would support real medical intervention. It’s bad enough to have such ignorance around us, but our loved ones need to make a special effort to be as involved and educated as we are or they can inflict further (psychological) damage to us. There was nothing worse to me than to be caught in the torrent of pain, fatigue, fever and disability and to be told that I must have eaten something wrong, drank too much coffee, etc. Even though I suspected differently, having my loved ones become accusers rather than supporters did incredible damage at a time when I was most vulnerable. I am in treatment now, and can walk again – thanks to the MEDICINE, not to blueberries, or gluten-free, or meat or no meat, etc., etc.
Understanding that the motivations behind the willful ignorance of our closest loved ones is probably fear-based has helped me get over the lack of support. He even told me that he was disappointed at how I “embraced” this disease – in other words, if I pretend I don’t have it, it will go away for him and he doesn’t need to fear it anymore.
The medications are critical – the diet and lifestyle are merely support. For a handful of us, they provide more relief than for most of us, and many of us experience no relief whatsoever from diet and lifestyle changes. For me, all bets are off without the medication – without it, I would be in a wheelchair (that is, if I’m lucky enough to make it there from bed).
Stay strong and positive in the knowledge that you are NOT the cause of this disease – you need outside help, unless you are one of a very small (and I am not quite sure they even exist) minority.
What are the things that make us similar?
I see a lot of people who are strong, some even stronger than they think they are.
People who deal with pain, disability, depression, anger, and still manage to care about other people.
I see people who are willing to take the lead in spite of all of this and advocate for further understanding – especially for those of us who may not be able to do it ourselves.
I see many different kinds of people from the far corners of the world joined together by the common problems of this disease.
I’ve seen friendships formed, support offered to strangers by strangers, gentle hugs, and shoulders to cry on.
I see people who’ve dealt with the disease for years mentor people who are reeling with confusion and despair over a new diagnosis.
What makes us similar? Not so much this terrible, painful, disease that weakens our bodies but our willingness to help, offer comfort, friendship, and to hold each other up and reach out to someone who is having a bad RA day even when we ourselves may be having the same.
(((gentle hugs))) to everyone.
Beautiful Mary. Thank you for writing this. & reading this is a huge dose of looking on the bright side – something else most of us do.
Having to buck up and ask for yet another favor. Or worse, having to appologise because I don’t have the strength or energy to grant a favor.
you are so right. I hate that one.
Hating the name “rheumatoid arthritis” because it sounds like no more than pesky joint irritation. Do I want to have a more grim sounding diagnosis? No. It would just be nice to be able to have a more concise, descriptive name for this all-consuming disease. Something that doesn’t elicit others to say in reply, “Oh, yeah – I have a sore (insert body part here) once in a while, too. Sucks getting old, doesn’t it?” Yes, an autoimmune disease sucks, but no, I’m not old.
Here are my additions:
The word ‘normal’ now has a new definition.
Being asked why I am taking Methotrexate for ‘arthritis’.
Feeling that the fatigue is often worse than the pain – because pain tolerance has increased.
Having people who just met me, tell me of a ‘cure’ for RA. (usually cherry juice or something along those lines)
Not even discussing my RA, because then people will show me their arthritis, OA, and start comparing. This is the worst.
Finishin each other’s sententces.. BRAIN FOG!
The sudden on set M I G R A I N E S which are cured by nothing.
Occassional slurred speech.
Calling it an AUTO IMMUNE DISORDER because it scares them more than I therefore the message hits home.
Bravery beyond the fear of having a child or loosing a spouse or being shunned. More like…. BRAVEHEART bravery. Fear nothing to win it all kind of bravery
When it comes to having the invisible illness, that is what I feel makes for a strong bond among those of us with RA. Regardless of the very specific symptoms that we all face, we all deal with those who just don’t understand or are skeptical of what we are experiencing. It becomes our burden to educate everyone about the disease and its effects.
good point. That certainly binds us together.
I was just diagnosed with RA and I am angry, so very angry. I am 33 and have watched RA desimate my mother for the past 20 years. These posts give me hope in ways I didn’t know I needed. RA, it appears, has been my destiny…and I was not surprised by the diagnosis. What surprises me the most is the level to which I have lost mobility and have not noticed. Your messages speak of pain tolerance, fatigue tolerance, everyday “work arounds”… I did not realize I was living and working within these constraints until a doctor TOLD me I have RA. It was like someonee turing a light bulb on for me. I am incredibly grateful to have found this website and will be back. Bless you all!
Dear Kate, I’m so sorry RA was in your destiny. I hope that good treatment and relief are too!! We do tolerate SO MUCH and just keep raising our pain tolerence, don’t we? How else could we cope?
If I hear one more person compare RA (which I was diagnosed with at 15 months old) with OA, I am going to scream. If I hear one more person say to me, “Oh, I know JUST what you’re going through, I have arthritis in my (insert body part(s) here,” I am also going to scream. It’s gotten to the point that I don’t even let them finish the sentence before I cut them off and say, “Nope, not the same, totally different, RA is an AUTOIMMUNE DISEASE, I have it in EVERY joint in my body, I WISH I only had it in a single body part or two.” I sound like a broken record, and I probably sound rude too, but honestly, I don’t care. I’m done being a shoulder for people’s self-imposed pity parties about the OA in their freakin elbow, while meanwhile, 23 surgeries later, life flights in a helicopter, and a seizure disorder, ALL DUE TO THE RA (I kid you not), I’m still being positive.
Hurrah, Jessica!! I *hear* ya!
The greatest gift of this group is even though I know none of you personally, knowing that im not alone in the world with these thoughts. Hearing the voices of others with my unspoken words coming out, feelings I’ve been too ashamed to share with people im close to gives me comfort. Im not a negative person and while I have always been giving of myself to others yet I’ve been reluctant to share my pain and suffering with those that care about me. Doing so in small doses as many of you have relayed has resulted often in disappointment. For some crazy reason I’ve also been ashamed…if I were stronger id b better. Ashamed that my kids worry about me and despite my best efforts, know if im having a bad day. Ashamed that I can’t open a jar of jelly for my 11 yr old. But these feelings are so destructive. As time passes I
feel less of a need to justify myself to others and try to focus on my own truths. I’ve fouund also that this saves prescious energy! I’ve recently started orencia infusions and though its slow acting and my full response is yet to be determined I can defintely appreciate some positive changes. I thank God for this bc not too long ago I was sure my best days were behind me. Now I know this is not so. I pray for continued blessings and pray that all of you are blessed. We are strong, we are fighters and we will not let the ignorance of others oppress us any more than we will give in to this horrid disease!
Christina, I *hear* you and I will take your message as far as I possibly can. Very well stated.
Thanks Kelly! I do want to vent about one thing. One of the most insensitive cruel things a person can say is it couuld be worse, u could have cancer. I was shocked at church to hear these words from a woman who just happened to overhear a conversation I was having with someone else. I was being asked how I felt and how my treatment was going. I was not on a pitty tirade, but tirade but at this point I was really struggling. The woman that interupted was being treated for breast cancer. Now I wouldn’t wish what was happening to her or any other cancer patient on ANYONE!.I felt ashamed even though I was only ansering the questions of a caring friend. Then I got angry! Cancer is awful, devastating no doubt. But think about the outcomes. U r either cured andrew ur suffering ends or u die and ur suffering ends. When will my suffering with end? For the rest of my days I will have RA. There will be joy in my life and good days and I amm so grateful for those, then there r days like last night when I cried myself to sleep during a thunderstorm bc the pain was that intense.
Your posts always touch me deeply. That experience is exactly what so many have confided to me. It is what drives me again and again to be a voice for them no matter how hard it is. We all press on so hard & endure so much without anyone really knowing about it – except for fellow RA patients. I had my RA minimized again today by a dr who always interrupts me to tell me I’m not very sick (he’s my pain doc). That could be said another way – a pain doc. Haha.
I hear so much about RA and OA not being the same, and I know this to be true. However, I’ve been told I have both. At my last visit with the Arthritis Clinic at my VA Hospital, the “doc” that I seen told me there was nothing more they can do for me as my pain is from OA and not RA. I was P***ed. How dare him! 6 months ago they had to take me off of the methatrextrate due to it messing with my liver. They put me on Leflunomide and it sucks for me! My flare-ups have gotten more frequent and more severe. However, like you all.. I hide the pain from most people, continue to go to work, and on weekends I lay around recouping so I can make it through the next week. I have a few “support” people but my husband tells me to suck it up and go on. I just want to smack him but I know it would hurt my hands more. <>
Hi Alice,
Sometimes they can go back to the methotrexate if the liver has been ok. I don’t knowif that’s an option for you, but you could ask.
I hear the “your pain is not the RA” from RA patients every day who know better. I think it’s coming from the recent tendency to heavily rely on blood tests for inflammation. The tests are not accurate for all patients, but some doctors are practicing by them as if the blood tests are better indicators of disease activity than asking patients.
Most RA patients develop the other diagnoses/labels sooner or later: OA, FMS, Sjogrens, osteoporosis/osteopeonia.
I never realized how disabling RA is. Thank you for writing this article.