The Tug of War of RA Awareness: Privacy of Pain & Agony of Disclosure
This week’s post on Rosalind Russell raised some important questions. A comment by Ronda was highly critical of Russell for the way that she hid from the public the severity of her suffering due to Rheumatoid Arthritis. How can we raise awareness if we hide how bad it is? It’s a good question.
Rosalind Russell was so much like most of us that it stunned me and the more I read, the more affinity I felt for her. She was an example of grace and humility, but is she our model for increasing awareness? We discussed what makes us private about RA in a post about Lucille Ball, who hid her disease. I’ve written that I don’t like to tell people about my RA because of experiencing disbelief, ignorance, or ridicule.
Ronda said I’m a better type of RA hero because I tell the truth. I love Ronda, and I want to be fair. Rosalind was a public figure who got RA. I was a girl who got RA and became a public person because of it.
My personal awareness achievements are mixed. I still have difficulty.
Some don’t want to hear the truth and I don’t force it on them. Everyone I know seems to know someone with mild RA that makes me sound like a liar. I admit I sometimes choose the easy road and get quiet.
In a way, it’s a lie when I put on makeup and a suit and get on an airplane to go to a conference. Usually, I’m writing in sweats lying on my sofa. I don’t do my hair or put on makeup because it hurts too much.
Last week, I had a hard time opening the door to the building and then I stood in the front of the room trying to explain my joints are sick. Did I show them how sick? Definitely not.
I wish someone took a picture of me with my shoes off and my feet up in the front row at the Mayo Ragan conference in Jacksonville. Everyone knew I was the patient at the table by my pillow and the pillbox I raided every four hours, but it was far from obvious how much pain I was in. Yet, there were occasions to disclose more. During an introduction, Susana Shephard (with Mayo Clinic Social Media, Phoenix) found a way to give me a complement without any condescending “But you don’t look sick.” She just said she wouldn’t have noticed my RA at first glance. I got to share with her that I don’t look like that every day. It was a remarkable open door to share more about RA and make a new friend.
Ronda’s warning is good. I have pondered these things before. It is risky.
Sometimes being very open about RA has backfired. One example is our orthodontist. Although he treated three of my children, he refused to create a new nighttime appliance for my teeth since he says he “can’t understand what’s going on” with my health. I ignored raised eyebrows in their office for years as I was very open about my RA. I have this ridiculous urge to win people over when they think I’m crazy. Now, they won’t treat me and they can’t explain why. RA is why.
Disclosure is our necessary evil. But RA is more evil, so we’ll blaze a trail.
There has never been awareness of RA. The medical community does not understand it. Only the people who live with it do.
Someone wrote that Rosalind Russell finally brought awareness to the whole country about the horrible disease, RA. I read that a couple times, but where is the evidence? If it happened, it must have been one bright shining moment. But it didn’t last.
I like to think that we are finishing what Roz started.
At the end of her life, she lobbied and met with officials to advocate for RA research. People said she was frustrated that doctors had so little knowledge of RA. I don’t know how things changed personally for her when she realized that the disease was more than painful – it was destructive. I doubt she had friends with RA to talk with about it like we do.
Don’t miss!!
Why I Disclose about RA, a blog post on WEGO Health
New comment by ACR’s Steven Echard on recent news of Rosalind Russell’s legacy with RA
Rosalind Russell Medical Research Center for Arthritis at UCSF
Recommended reading
- Rosalind Russell: Rheumatoid Arthritis’ Most Glamorous Celebrity
- Patient Stories May Provide Real Help via Social Media
- Weight of Patient Reported Outcome Measures on Diagnosis & Treatment of RA
Hi Kelly,
Yes it is a bit of a conundrum, I find that I feel the need to explain my RA to people because now it is becoming more and more obvious that I have ‘something’.
However I was delighted recently as I was talking to a new acquaintance and I mentioned some special needs to do with plumbing (I have spent many dollars over the years putting in instant hot water services at every house we’ve had so i don’t need to struggle with taps to get the right temperature, I also have 3/4 turn spindles in the tap ware so they are easy to turn off and on and they never drip).
Anyway, he told me he wouldn’t have known I had arthritis had I not mentioned it, then I showed him my hands and he had that ‘ah ha’ moment of realisation. Then the usual questions about how bad is it?, where do you have it other than your hands? Do you take pain killers? (Yeah!!! absolutely I take so many I rattle!).
People are always surprised, they very rarely have any idea, other than their own limited experience with a ‘bit of arthritis’ in their knee or shoulder or thumb.
My usual comment is that rather than explaining where I do have pain it’s easier to explain where I don’t have pain – the answer is – my nose! (and my ears are not too bad either except when I get referred pain from my jaw!) If it moves it hurts!
At the same time, how do we avoid being nothing but the disease? Sometimes I feel I am defined by arthritis rather than anything I’ve achieved.
Cheers
Tracey
Very nicely said, Tracey. Thanks.
I just started reading your blog about a week ago and I love it! Thank you for sharing the information. I had no idea that Lucille Ball also had RA.
I get the looks a lot too when people find out I have RA. Usually the first thing they say is “you’re too young.” Well I am only 25…but I have it anyway. Luckily for me I have a very caring and supportive family 🙂
Dear Katy, as you can see from Amy’s blog (comment after yours), even kids get this disease. It has nothing to do with aging. As far as I’m concerned we are all too young to get this!! Welcome. 🙂
I often times wonder if this is why my Jenna Bean hides her pain. Does she think we won’t believe her?? Is it just too private, even for a 7 year old?? I know that with my fibromyalgia, I prefer to hide the pain. Most days I am in AGONY. But why bother sharing? No one can SEE it therefore they don’t GET it. And there is nothing than anyone can do for me, so why bother? This post has given me great insight as to maybe why she doesn’t want to share her pain, share her disease.
All I can think is that if we don’t speak up….who will? In a way, no matter if want to or not, those of us that have RA are an ambassador for this disease. So, good, bad, or ugly I don’t hide what’s going on with me.
Like Tracey mentioned above it is important to not be defined by the disease. Some days that’s easier than others. Sunday and Monday were “good” days. Today I’m struggling.
Dear Kelly-
Thank you so much for this post and for all you do in helping RA sufferers feel less alone. I have committed to telling people what’s going on, even though it feels out of control sometimes. I fear that they will judge me as weak, less competent, and less reliable, so in the work world I put (probably too much ) pressure on myself to seem reliable.
By the way, I have read in previous posts of yours that you had a horrible time getting a diagnosis because you don’t “swell.” I’m in that situation, too. It’s maddening. I got told yesterday that it must be depression making my joints hurt. I, like so many others, am on the search for a doctor who is willing to look carefully and to listen.
Oh Sonya, is that how the appointment went (I replied to you on Twitter)? I’m sorry!
Also, I remember reading your disclosure post and seeing you tell the world about what is happening to you. Thanks for your part, too.
This has turned out to be a huge issue – I hear from patients constantly with this issue. I just wrote some replies about it on Facebook just now. Have you looked at the replies on the swelling post from last year? They might make you know you are NOT unusual with your symptoms.
I love that Kelly gives me so much to think about. I am a positive, up-beat person who has just begun my journey with RA. The last thing I want to be is a complainer to my family, friends or even acquaintances. My pains still bounce around a lot. This morning it was my left foot, tomorrow it may be my right…. or maybe none. Last week I had a few days when I could not walk because of knee pain. Thankfully my pains still remit after a few days and I cling to that as I put my life on hold during these flares.
I have decided that I need to more frequently mention my RA challenges in passing. People need to hear a bit about this bizarre disease. The tricky part is coming up with a comment that will bring a response more about the “weirdness or severity” without the pity or the incredulity. I am thinking more and more that it is important to put it out there now, so that as things progress, these folks will not be as shocked or feel that I am overacting for their sympathies. Thankfully, I can usually say, “Oh I am okay at the moment, but boy, last week was rough!”
By the way, I constantly chuckle to myself, about the comment, “who shot me while I was sleeping?” from the blog a few weeks ago. It is like a goofy bad joke that I am an insider on. It is a bummer that I get it. But it is a blessing to know that there are others out there who get it too. I thank God for Kelly Young!
I feel that as victims of this nasty disease, we need to inform people of what it’s like to suffer from RA. I’m doing my best to spread the word.
Hi Kelly
I can appreciate the comments from both Ronda and Turtlemom. As you may remember, I also commented after seeing a short excerpt of Kathleen Turner’s interview on tv recently. So reading this blog, given that I had a strong reaction to Kathleen Turner’s comments I wondered why I had not had a similar reaction to the blog about Rosalind Russell.
It led to two different answers for me.
Firstly, what made me mad about Kathleen Turner’s comments was the fact that she quite clearly minimised RA and it’s effects. When asked what was the most important advice she’d been given regarding her RA (whilst she swigged from a glass of alcohol) she made breaststroke movements and said ‘Keep moving’. It made me see red because she was evidently medicating with alcohol and also because she minimised her RA. In doing so she potentially minimised all of our RA to millions.
Now to Rosalind Russell – admittedly she didn’t make mention of her RA and it’s effect on her at the height of her career, but afterwards she spoke the truth – her truth, even to the point of lobbying Congress!
I know I minimise my pain for the same reasons that you mention Kelly. It makes me think further.
Earlier in my life – in my mid 20’s – following some traumatic experiences during my childhood and nothing to do with RA, I chose to undergo therapy and did so through residential treatment for 14 months. What I achieved during that time for me changed my life. I was adamant that I would tell as many people as I could through stories in articles, speaking at Service Clubs such as Rotary etc and people were surprised that I didn’t fit the ‘stereotype’.
However, as my journey went on and my jobs came with more and more responsibility, I found that to speak as openly as I had, or to use my full name was like committing career suicide. I was single with no family nearby and I needed to survive.
So from looking at myself, I understand why Rosalind Russell handled it the way she did. We’ve all been open and honest re our RA and most if not all have received the deep sighs or ‘funny looks’ and have met many who have ‘a little bit of that’ in my knee/toe etc.
So I ask myself – if a ‘movie star’ had/does speak the truth about RA, would they be believed any more than one of us? Especially given some of the truly unusual/eccentric behaviour we see in some of todays celebrities? Or will it take some well respected physicians to take up the fight with us? I think I know one person who would welcome the chance to stand beside whoever this physician might be – any idea who I’m referring to Kelly? 😀
Unfortunately I believe in my heart of hearts that she “minimized” her ra because she also feared the loss of her job and her ability to make a living. Hollywood is just like any other business and although she might be a terrific actor, they to invest in movies for an ROI…return on investment. And likely if she was known to have to have alot of down time…this would cost them millions of dollars if she was shooting a movie..she would not have been considered for future movies or shows.
Sad but true.
Even in todays markets…disclosing ra or any illness that will impact one’s ability to perform their job can and does force companies to choose other employees who do not have these concerns for promotions, pay increases, etc. etc. Particularly during an economic downturn. It is sad but true. And yes, there maybe laws in place that are suppose to prevent these very things but unfortunately it can be very difficult to unravel whether a layoff is due to lack of work for a company or by choice to reduce their benefit plan costs, having to cover due to time off, etc. etc. I personally witnessed the layoff of one woman who had breast cancer in my company. I also have found that this usually happens more with small to medium size employers as alot of the laws impacting employee protections apply to companies with more then fifty employees.
Sooo…I really do understand her wanting to keep it under wraps and not make it public. Just because she was famous doesn’t make her any less likely to be financially impacted should she not be able to find work.
Hi Kelly,
I wish I was at the “full disclosure” state that you are in. While I can do it around most friends and relatives,to do it at the new job is still too scary for me. They have not seen the horrible condition I got to back in 2006 after being off drugs for a year (after 3 yrs of steady treatment on Humira and MTX). They have not seen the trauma of numerous surgeries. They have not watched a 45 year old man walking like a 95 year old in extremely poor health.
So far I have been able to hide it from everyone here. I am sure there will come a day when my “secret” gets out, but until then I will suffer in silence or let the info slowly leak out thru a few trusted souls here. I guess being a man has a lot to do with that. We are not allowed to cry or be less than super human.
And like you, most folks never guess I have RA. One patient being infused with me the other day actually mentioned my lack of deformity in the hands. Yes, luckily I only have one finger that curves moderately in the wrong direction. Can’t tell unless I point it out. But because I don’t present with outward deformities, people think it must be a very light case. 1,360 mg of Remicade every 4 weeks would seem to be a pretty significant amount of drug for a light case. In any event, I hope I can be more open in the future. You guys and gals are my heros!
I am not at full disclosure. Like I said, the orthodontist thing stung. I have family members who act like it’s a mental illness & not physical so it’s the “unmentionable” and I don’t push it since they know I write the blog & they can read it if they want to open their minds to the facts.
Lots of people with secret RA – to keep their jobs mainly – do write me letters or post here under a pseudonym . I never would pressure anyone to make a disclosure. This is a valuable discussion to have & we can all gain from each others’ experiences. But we have to live with the consequences so we can’t decide for each other. That said, I think most of us do want to disclose more as we feel able & as we gain support from numbers.
Thank you for sharing here!
Ladies,
I truly do understand the pain you are all going through however, I do wish more men would discuss how this disease affects them. I have had RA and Fibro. for approximately 14 years. The last 3 years have been the worst. It is frightening how many aspects of our lives this disease interrupts or destroys. I would really like to know how it affects other men.
Sam
You have to remember the times they lived in. Lucy and Rosalind were professional business women when it wasn’t easy for a woman to be in business. No sign of weakness was allowed.
I am not as old as these two, but when I was diagnosed in the ’70s. It was hard enough for me to be treated as an equalin the business world, I constantly had to prove that I could do better than any man just to survive. If I had told my bosses about my RA, I would have never progressed in my career. I had proof of that as a coworker could not hide her RA as the disease turned her hands into knots, she was systematically looked over for assignments and promotions.
We have to live in the world we were born into. Currently our world does not look well on weakness and is obsessed with quick fixes. Having RA does make it easy to survive on it’s own, but put with the pressures of this world, it is hard.
Show some sympathy and respect for those who went before who had the courage to whisper they had RA, giving you the ability to shout today.
I believe that both of these posts are full of “sympathy and respect” – possibly going overboard in that direction, to the point of frustrating my friend Ronda who has been a great support to me personally through my difficult disclosure journey.
I’m sorry. I guess you see something different here. I guess this is one more opportunity for me to follow the old addage: “You can’t please everyone, so you might as well be yourself.”
And I just learned about Roz in the last few months. She did not give me “the ability to shout today.” As I’ve written in this post and others over the last 2 years, it’s been at great cost.
I don’t remember if I’d said any of this before–if so, just remember I’m approaching 80 and am allowed to forget. LOL. My hands are about as deformed as hands can be, even after implants years ago, yet most people don’t even notice. How do I know? Because many of the elders I live with in senior housing will complain to me about arthritis in their hands or show me a small OA nodule, and when I say “Have you ever looked at my hands?” they say no and then nearly fall over when I display them! And yet, on the other side–a stranger at a concert said to me “I can’t believe you can still write with those hands” and this a.m. when I mentioned to my dentist that I had fallen and broken the last intact implant, as well as other tendon and ligament damage, he walked me to the door and helped me down the outside steps!” Young men, especially, offer their arms in airports, etc.., so I figure it just depends on the person and how self-involved, or not, they are. I usually respond with “All things considered, I’m doing pretty well.” I’d
rather not encounter the dread “I have that, too–my hands are so stiff some mornings.”
Kelly thank you so much for another awesome blog post. You seem to know exactly when things need to be said! As some of you here and on the facebook page know I am not one for tactfulness. I am not one to keep my thoughts or opinions to myself either. It is a flaw of my character at times. That is why it was very strange when I received my diagnosis almost 5 years ago that I did not want to let people know. I said things like just have a few aches and pains today. I would also say it is a sign of middle age not being able to do what I used to do. Was I in denial or didn’t want others to know? After a year of working through my own emotions I knew it was no longer my denial. I was afraid of what others would say and I was right. I received the snide remarks from my husband and family. The if you would just walk more, eat right, take this, don’t take that, ignore it, depression. I am going to rip someones face off remarks! So once a gain after testing the water with my family, I kept my mouth shut except on here. Here no one knew me truthfully except by a name. I could pour my heart out and be heard. I was understood and not rebuked or put down. When the awful day came that I had to finally sit down in a wheelchair and admit this was me for the rest of my life, all of you were there and had already gotten me ready for it. I no longer have the type of RA that can be hidden. It is really hard to hide a power wheelchair no matter how many bumper stickers you put on it! Now when the rude stares and comments come I have thousandes of Warriors standing right there behind me and several of you are leading the way. Yes it would be so much easier to just stay home and hide in the closet so to speak. How far would that get me or the need to get the public to understand that RA is a disease that is just as dangerous, life changing, and altering as amputation, paralysis, cancer, and a host of others. I would love to be happy with just people knowing about it but that is the problem, people do not know about it. They think it is OA, not. Ok, I really need to get off my soapbox now and stop hijacking your blog. Hugs and love to all that went before us and those to come after us, and last but not least all of us now.
Hey Kelly,
I so get the orthodontist thing, I’ve had stings like that too and when it happens I tend to shut up for awhile.
On the brighter side of awareness I enlightened my neighbor just a few days ago. He knows I’m sick and so on, but I knew he never grasped the severity of the disease. So he’s telling me about how his shoulder hurts really badly sometimes and how he injured it when he was younger, then he asks me what I think could make it hurt. I told him it could be osteo arthritis.
I got him to go to google images and look at the pictures of osteo arthritic joints….then I had him type in rheumatoid arthritis. He said “oh my God Lisa!! That’s what you have?”. I saw the light bulb go on and I know he will remember those pictures we’ve all seen of deformed hands and feet.
Remember everyone, a picture is worth a thousand words. If someone asks about RA and you’ve got a computer, don’t hesitate, show them the ‘why’ in WHY we take these drugs. Then tell them that the drugs aren’t a guarantee and many people don’t respond or stop responding.
After I replied to this post on FB, I started really thinking hard about it and how much I hide of my life because of the RA. How many friends I have lost and relationships that have cooled because of my fear of being honest about what was going on. I decided I needed to speak up about my life with RA to my friends and family and anyone else. I posted it (so hard to push that publish button!) and I feel so good. I spoke the truth about myself and I figure if anyone judges me or thinks anything other than positive things about me, then they are the ones with the problem. Not me. I want to bring awareness to RA and hopefully put a face they know with it. Thank you so much Kelly for all you do and for giving me the courage and inspiration to stand up and say this is who I am.
http://www.facebook.com/note.php?created&¬e_id=204535766241419
Dear Stacey,
Your note is beautiful and very well written. I hope a lot of people have a chance to read it & will be touched by your transparency. I’ve really been moved & humbled so many times by my readers and you all give me so much motivation to do all I can.
Dear Stacey,
I read your note on FB and was touched by your empowering, eloquent statement. Thank you. Wishing you all the best.
Thanks ya’ll! It was so hard to post something like that and since I have, there has been nothing but love and support, so thank you.
Thank you Stacey for sharing with us and increasing awareness, very well written and very brave, I know it is so hard to do this, as we see from all the comments here. I am with you, I don’t want sympathy, I want understanding and awareness.
Very touching Stacey. Thank you for sharing this.
Its so hard to find that balance of sharing with others. I have felt alienation from others because of RA and like you said Kelly, sometimes you just can’t win. It was really hard in the beginning , about 20 years ago, when i tried to share with coworkers. I don’t think I was too “sharing” or overbearing. They were just interested in the amount of work placed upon them when i had to call off work.
Over the years, people have come and gone in my life, and a few have stayed with me , despite RA. Its such a complex disease, and people have their own lives and get burnt out by the taxing relationship of having a friend or coworker with RA. Maybe this sharing of RA gets harder as I get more tired of having this illness over these long years of unrelenting disease.
I do want to say that none of this particular blog or comments seem to me to be negative or unsympathetic. I find all of our comments enlightening, and hopefully we can all learn from one another. I am so thankful that RAW exists, to be able to do this, and I so wish it would have been around when i first became sick. I felt so isolated and alone. My husband and family did all they could possibly do to support me, and I am blessed by that. But they could only understand to a certain degree. There is nothing like having supportive friends who are sharing the same journey as you.
I do think that it is maybe easier to share due to the advocacy efforts of Kelly, and my RAW family. I am still leery of getting burnt, and of overtaxing my relationships. I also don’t want to be known simply as my disease, so I am not one to bring it up at every opportunity. I do try to teach when the situation warrants it. I guess that is my form of advocacy.
Hi, Julie, It is hard to have a friend who is “high maintenance” for one reason or another–over the 54 years with RA, most of my friends have been wonderful and helpful–now it’s payback time. I am dealing with several friends with senile dementia, or refusing to wear their hearing aids,or unwilling to go anywhere–many of the ones who helped me all those years, and I have to remember that I owe them. There are no easy answers.
Some, of course, dropped away, but I find that more of them are annoyed by my celiac disease, and its symptoms, than my RA. That has proven to be a real test of friendship, since I can’t eat at most restaurants, or at their houses easily. I guess I would offer this: “If some one person doesn’t want to put the effort into the relationship with you, find someone that does. The good news is :)as you get older, so are your friends, who are also slowing down and developing their own limitations!
Thank you, Kelley, for this post and opening up this conversation.
Loved this post! It echoes thoughts I have had and puts them so much more clearly than I would- like how I try to explain to people at my barn, who have seen me do hard manual labor, that I am slow sometimes, or clumsy and awkward for a reason…or that I do know what it feels like to age and have your body fail even though I am one of the youngest people there. Some even know I have RA and its like they forget…people often don’t know how much effort it takes to push through pain. It makes me want to help people understand, but as you mention, sometimes it is so easy to sidestep the issue. But thanks for your efforts and for such a great post!
When I was diagnosed and found a facebook page for RA I was angry! at how everyone just deals with it like a warrior! I was not feeling like a warrior. I wanted to shout to the world that this is happening! Such unbelieveable pain and disability! I really felt that everyone sounded way to strong and happy. Joking about the pain. This needed to be heard. All my friends had no idea what I was going through and I felt I was worth being understood.
I hope I make some sense. I am just so angry that my life was taken from me this way through RA.
Hi Shelly,
I know how you feel. I was so angry for a long time. I felt cheated! I was super active, involved in rock climbing, rappelling, water skiing, you name it, that was my life. I fought for the first year to get a diagnosis and then spent the next 5 years doctor hopping looking for one who would tell me that wasn’t what I had. I absolutely could not accept it. I bet most of us on here have felt that anger and rage. For me, time and acceptance of my condition have dulled it, but it still lurks and every now and then, and when I really want to do something that should be so normal, so easy and I can’t, it rears it’s ugly head! I also think that because this disease is lifelong, eventually you kind of have to start having less anger and more positivity. But we are all here for you no matter what! 🙂
Hi Kelly,
I guess what I have a hard time understanding is why people feel the need to disclose their medical conditions to their boss. There are laws to protect people’s medical privacy in the workplace. The way I see it it is none of his business what my medical condition is. If I need to disclose something for special accommodations or work arrangements I can then work with HR, but where I work my boss is out of the loop on that. Now it isn’t that I don’t like my boss. He’s a really good boss and I’m happy to work for him, but one thing that makes me very hesitant to disclose my RA is you never know how he’ll respond. I don’t want him to look at me any differently. I want him to continue to invest in me, challenge me and give me opportunities. If he thought I was “broken” or “impaired” somehow, then perhaps he might change his approach towards me. I don’t want that.
Fortunately for me my RA symptoms are more controlled now and I function as normally as everyone else I work with. Other than going to the doctor a bit more often than the rest of the people in the office, I do everything they do and produce high quality work.
Now I do disclose with family and friends. My parents understand because my dad’s mother had RA and my mom has RA so they have first hand experience. But not all of them understand.
I don’t know how many of you watch Desperate Housewives. I’m not a fan of the show, but my wife is and I catch parts of episodes from time to time. Apparently one of the characters is currently having problems with her kidneys and is on dialysis and was using this fact to garner sympathy and favors. At a restaurant where she was again trying to gain a favor of not having to wait for a table a man (whose wife apparently had RA) waiting for a table called her out and said, “Everyone has something wrong with them. What makes you so special?” I thought about this comment for a long time and you know he’s right. Everyone has problems they deal with in life. Perhaps it is too much for us to ask that people fully understand what we go through. Maybe it is enough that they know.
I also have not disclosed my condition to my boss(es). I work in a restaurant, and it is HARD on my body. My RA has not been treated since December, save for a pred burst/taper a couple of weeks ago, because of insurance issues. My right hand is in constant flare, probably because I use it for too much (writing, scrolling on the trackpad when I’m on the laptop, knitting, and for the past few days, spinning yarn, etc.), and my hips flare up often. My co-workers know I have RA, and I disclosed it to a few regulars who are in multiple times a week, when I came in a couple of weeks ago with a wrist brace during a flare. The pain was shooting up my right hand and my wrist was very weak. That same week, I had injured my right ankle…you can imagine how hard it was not to hobble around the restaurant during the 30 hours I work between 4PM on Friday and 11PM on Sunday.
As for the non-regular customers who asked, the bar customers whom I don’t know well, and my bosses: I said it was carpal tunnel. It’s just easier that way. I don’t need to lose shifts because my boss thinks I can’t hack it (though I could stand to lose shifts for the sake of my health), and I don’t need to try to explain RA to people I don’t really know, while I’m trying to work.
It’s definitely a delicate balance, who you disclose illness to. I don’t even talk about it with some of my friends and family because sometimes I question if it’s really as bad as I think it is, if it’s all in my head or if I’m just adjusting to the level of pain. I even feel awkward talking about it to my grandmother, who is in her early 70s and has had RA since she was a child.
Wow you’re a trooper Megan. I couldn’t imagine running around and keeping up with the demands of that kind of a job with an RA flare or just regular old RA. I feel pretty fortunate that my biggest problem at my job is that it is hard to type or mouse when my hands hurt or that my knees stiffen up when I sit too long. I guess I should count my blessings.
I don’t think any of us with RA really has it better than the others. We all have the potential to be debilitated in the end, so whatever we can do while we are able is just as good as anybody else. I hope that makes sense!
Disclosure is a necessary evil and yes, we must blaze a trail. Kelly, your post was wonderfully written and sums it all up! Ummm, blushing, I did get a little “passionate” in my comment. Nothing against your post on Roz personally ya know, so please don’t take it that way. I do just really get sick of the be a hero crap, shut up and suck it up etc. The public doesn’t want to hear how it really is, they don’t want to feel those discomforting thoughts… They just want a feel good story of someone’s bravery whilst they be silent about their suffering.
I do understand why people are silent, it could have a big impact on them in a bad way, like no more paychecks! Or simply having your orthodontist refusing to treat you. I personally have a hard time talking about my RA because I DO NOT WANT TO BE PITIED! I just want people to understand how it is and why I am different now and increase awareness of this disease that is so shockingly misunderstood, even by health professionals. Also there are the many times I just get that blank stare from people that leaves me feeling embarrassed. But there it is, one of the prices to pay for increasing awareness, so I will keep it up! What we do now will pave the way for our grandchildren, and hopefully they won’t have to deal with this.
And it is for this reason that I believe that true heroism in terms of the disease means doing the difficult thing, refusing to be silent and forging onward with the message,for the sake of others. The decision to disclose or not is completely personal and there is no shame either way. But the decision becomes heroic when it moves beyond the personal. To speak out and to educate is heroic because it’s about something larger than you. When you speak out, you do it for more than your own sake- you do it on behalf of others who suffer with this disease, you do it for those who love them, and you do it for your children and your children’s children. You do it for the future, in the hope that we may someday know a world where when people say I have Rheumatoid Arthritis, others will nod their heads in understanding.
It was really late when I wrote this comment. Actually early for most and the start of their new day, teehee. My second paragraph is referring to you Kelly! – and anybody that goes past their personal issues to advocate. My daughter Laura helped me write it because my brain was fogged over with methotrexate and pain medicine and I just couldn’t get my thoughts into words.(She is a good writer!)
Besides advocacy, we can be heroic in other ways, just getting through an exceptionally painful day without making our loved ones distraught with worry. Striving to do our best for our health, as in eating healthfully, getting enough sleep etc. Doing things for others even though it is at our expense, such as making lunch for a loved one or lightening their load when they are in need.
Thanks for this post Kelly, you are truly a hero.
Thank you all for commenting, it is so interesting to hear others experiences and opinions. It always gives me food for thought and keeps me from living in a tunnel of my own ideas.
Funny, I just wrote a blog yesterday about “Becoming our Disease….” It stemmed out of a conversation with a dear friend a month or so back.
Anyway, I have no problem with the way Rosalind Russell handled her RA. She worked at the level that would bring the most good. To reveal all to her studios and her fans really wouldn’t have served an additional purpose, in my opinion. I have long held fast that “Normals don’t get it” – and talking to normal people about our problems only challenges their belief systems. Normals go to a doctor with a problem and get it fixed. We maintain in hopes of not getting any worse – or slowing the progression. Ever notice how cancer patients tend to lose friends because people don’t know what to say, or they are just plain frightened of a disease that can’t be cured? It’s much the same with us. If they found the perfect drug tomorrow that would halt RA in its tracks, it still wouldn’t heal what already has been broken. We have the additional onus that we “don’t look sick.” Yes, I got it again the other day: “Are you certain your problems aren’t psychological?” While tempted to rant, “Oh, yes, I’m sure all the blood tests and MRIs and CTs and Xrays are in error and this disease is all in my head,” I politely said “I only know what the doctors have told me.”
It is not our duty to educate everyone about our disease. It is our duty to sound off where it will do the most good.
just found out i have this , my mother got colon cenacr because of untreated celiacs disease , it is no joke , but i am glad i know i have it , i was depressed and did not have a normal bowel movement for a year , then i started to feel like i would vomit after each time i ate , in two days of not eating gulten i was almost back to normal , thank god i found out , hope this helps
I believe that there are things that can be disclosed as there are things that should remain private.
Facts/correct information about RA should be disclosed. We can use these to create awareness about RA.
The pain we suffer whenever we have flare ups, I believe that should remain private.
To whom we disclose the fact that we’re suffering RA is up to us. We choose the people to share these things with. We don’t have to let the whole world know that we have RA and how much we’re suffering because of it. The world just needs to be aware that there are people suffering from this disease – that this disease exist and it is not easy living with it.
Hi Charizza,
I felt the same way you did and in fact most of my friends and family knew I have RA, knew the factual info about the disease, but still didn’t get it.
I felt like I had to finally put it out there. The facts, the pain, the day to day struggle to live with this disease and to treat it.
I am worried that if people don’t understand the difficulty of living with this disease, there won’t be any awareness outside of knowing it’s name. Like I know what ulcerative colitis is, but have no awareness of what those people must go through having it.
Now I am not going to go around talking about my pain 24/7, but I felt like just once, I’d like to have people go oh! OK, it really is a life changing disease. That’s the hard part for me; how to bring awareness without opening myself up to friends and strangers alike. Thank you for giving me another perspective on dealing with this disease.
Stacey
Hi Stacey,
I’ve been there too and is still there. My family (immediate & relatives) and friends know that I’m living with RA. Some in fact have seen me suffering from a major flare up.
I know that it’s really hard for them (I’m pertaining to family & friends) to understand what we’re going through because first and foremost it is indescribable, especially the pain. And most of the time, I get the lines, “You’re too young to have that disease.” and “You don’t look like you have RA.” that I find it useless and tiring to explain. But I guess we really have to be more patient & persistent in order for us to be heard.
Right now the people close to me, I think they still don’t get the details but I believe they’re beginning to understand more as I try to “educate”/”inform” them about it.
RA has turned my world upside down…but I’m not letting this disease get the best of me…
I hope & pray that your family and friends will soon get to understand what you’re going through. And I hope & pray that you get the courage & patience fighting this disease and making the people close to you understand it. 🙂
Hi – I agree in some ways… but I know in my heart that until I connect in some way… by meeting people, hearing a testimony, even learning about a friend of a friend… I often set it aside and say, “… such a shame” instead of swinging into action. Now, who would not “walk for a cure” or whatever, if they had a loved-one, friend, co-worker or even acquaintance afflicted a big problem?
Personally, I knew that my aunt had gone through many wrist surgeries over the years… but I didn’t know that she had RA until I was diagnosed with it. Imagine my surprise when I learned that her daughter also has it! My own cousin, just a few years older than me and living 2 hours and I never knew this, nor did my parents! That is ridiculous! A disease that often has a genetic component… and I had no idea? It is because of this “not wanting to disclose” factor. We must try to change that for future generations! Having this disease is not something shameful. By not sharing, we may unwittingly, make it seem so. Or, perhaps worse, make it seem like it is no big deal. Either way – it is not the TRUTH.
Perhaps what we also need to think about is what will stir others to join us in DOING something to find a cure. Think about the stories in the media that generate the most response. You are told about the homeless family or the dog “named Lucky” so that you might relate to them… and then people who become impassioned for that crisis come forward and DO or GIVE or develop a foundation, etc.
That’s why we need to come out of the “closet”.
Hi Suzy,
I’ll have to say that we have somewhat the same experience. I didn’t know that my late grandpa’s uncle (mother side) had this disease and some of my grandpa’s cousins and nieces/nephews (as I don’t know how many) also has this disease. I thought I was the only one in the family who was unfortunately diagnosed and is living with RA. I was already diagnosed with RA for 2-3 years when I found out about it.
For my part, I’m thinking they too didn’t know much about RA. Or they just chose to stay private and be quiet about it.
But I think what’s important right now is to get the information about RA correct & straight & from here on create awareness. Yes, we could use our personal lives as proof/example of how vicious this disease is but that would be of our choice.
I think & believe that when we educate/inform our family & friends (or those people we trust and choose to share this info with) about RA, we do create awareness.
Creating awareness is not something that is instant. It is, I believe, a process. We have to be patient and persistent if we really want our voices to be heard.
I really do hope that they could find a cure for this disease but as of the moment, all we can do is fight RA. We should not let it get the best of us.
I have a zipper scar going straight down my chest, most people ask me about my heart surgery. Was it valves, did you have a by-pass? Your too young to have heart trouble! But then I say ” my heart was attacked by my body due to RA and calcified my heart with a half inch of calcium. The diagnosis was Constrictive Pericarditis,” then their mouths drop, eyes glaze over and then the statement that always follows…”Your to young for all of that.” Now I hear that oh so familiar response, I smile and say thank you, considering I am almost 51. I do wonder at what age they will stop saying that to me, LOL. I will have a good laugh if I ever hear “you are about the right age for that!”
So as I walk through my daily life my zipper is the only obvious sign of my RA, other than the constant falling,limping, inability to open doors, cans, bottles and a feeling of loneliness most people don’t understand.
My disease is not invisible, the zipper down my chest confuses people, my scar on my fused wrist makes people ask about it. If I don’t know them I sometimes tell them I received it while training Mountan Lions, now that is impressive. My hands hurt badly but are not mangled from the disease, most people comment on how well my hands look.
I do talk about my disease when I feel comfortable and have enough time to educate people on how vicious this disease is.
Kelly thank you for all of your work and advocacy, keep on talking.
Janette, please do tell me about your wrist fusion and your constrictive pericarditis. How long have you had RA? How do you like your wrist fusion? What were your signs/symptoms of the heart condition and how is it now after surgery? I’ve been recommended for BILATERAL wrist fusion, but am putting it off as longggggg as possible. Like you, my fingers are not very affected, but you SURE can see it in my wrists.
My experience with debating the RA tug of war turned out to be a tangled web.
At first, I tried to hide the fact that I had RA because I was always athletic and strong. That was especially difficult at work, but I struggled to smile and just endure the pain.
Then, it came to a point where I could no longer hide RA…while at work I remember not being able to pick up a small container of milk for my tea, I dropped it and had to ask a co-worker that was close by to pour it for me. Then getting out my meds and popping them in my mouth and not being able to open my water bottle..yikes! I had to ask another co-worker to open the bottle for me. That was humbling. My RA symptoms were out of control and despite my aggressive treatment from my doctor, the days were getting harder and harder.
I just could not give up and decided to reveal my RA at work. This only lead to an antagonistic boss, that did understand or care to understand RA. I filed for intermittent FMLA to cover myself for any problems down the road at work.
Some people were compassionate and others just chalked RA up to a minor ailment. I felt alone and not believed….
I thought to myself, these people knew me before RA, how could this be such a cruel reality?….but it was, I have found that no matter how you define RA, people in general do not have an accurate understanding of the disease.
I had to file complaints on discrimination at work and also interference with FMLA. This put management on their toes, but still created an atmosphere of hostility.
My experience has been that despite my disclosure about RA, there is still misunderstanding and discrimination.
It was evident when I could not turn the door handle while at work, or wore wraps and splints on my joints. Needed my lumbar cushion for my chair. My wardrobe had changed from dress suits and heels to pants and flat open backed shoes.
Did anyone notice?….I did….
Do I regret revealing my RA to my employer?…yes and no…
Yes, because when you have RA it’s like you are speaking a different language when you explain it. Some management people would rather not deal with accommodations…
No, because RA has taught me not to be a quitter, and I have just as much a right to work as others do. I find it is a continuous process of validating your disease…and so the fight continues….
Cella, sounds like you really have had a struggle! It seems it’s always this way at the beginning, because we don’t even know what’s going on with our bodies, let alone our doc’s knowing or believing us. Now bring in our employers! Forget just the beginning, it’s all along…We are just in this cloud of the unknown, pretty much, so shocked by the newness of what’s happening to us that we don’t realize the seriousness of it. I remember I couldn’t hold a paper cup in my hand without dropping it, and all sorts of things I managed to excuse for some reason or another. Looking back we can easily see!!
I was not working outside the home, so it wasn’t a big deal, but had I, well I can’t imagine what I would have faced. The first times I felt flu like symptoms, I would be working around the house, then have to sit down for 15 minutes to relieve the fatigue and dizziness. I thought, what a weird virus this is. This was 2 years before I was diagnosed. Can’t believe I put up with it, but then I found I was anemic, so blamed all on this…
You are doing an awesome job with RA and your career, an example of what we need to do to let others know how it is with RA, but keep working, not quitting and doing our best as long as we can! You are paving the way of RA awareness so some day our grandchildren will not face this hardship of ignorance with others. Awesome job Cella, hard journey, but so worth it for you and those in the future!!
Disclosure means vulnerability. It means opening up to others opinions and input. For a person trying to make a living and enjoy what they do disclosure is not an option. I use to work as a muse now I keep a couch warm. I went through 3 jobs in 3 yrs because as soon as they got to know me and there was disclosure superviors started making assumptions on what I should be and not be doing. How can you work and take pain pills. You didn’t know it a year ago. My last job I was chased out of, her son had RA. My advise is not to disclose! If I would of kept my mouth shut I might still be useful!
Correction. I use to work as a nurse. Don’t you love autocorrect!
Hi Susan,
I was wondering what a ‘muse’ did that would be so incompatible with RA? Actually, it might be something we could be useful at. As my keyboard skills become less and less I’m thinking a career as a muse might be just the thing! Except I can’t sit still for too long without getting stuck in that one position – so that might be incompatible with being a muse?
Yes auto correct is a wonderful thing, but it did give me a bit of a chuckle. Any chuckle is good.
And yes disclosure is admission of vulnerability and it seems we all have our own experiences of it. I have found that the only way I can be useful is working from home supporting my husband’s accounting business. I’ve gone from being a professional designer to being an accountant! I’m studying online and have found wonderful disability support from the college I am enrolled at. In that case, disclosure of my RA has meant good things, like all sorts of suggestions about keyboard aids, exam help – apparently I can have someone write my exam for me! Unfortunately I actually have to dictate the right answers, (would be better if there were no exams at all – but that’s just me complaining like all students!). However, I am allowed to take more time and have a personally supervised exam. So there can be an up-side to disclosure, once you take the plunge, it doesn’t always have to be negative.
Cheers
Tracey
I agree RA awareness is lacking…I have tried to explain it to people that have noticed my swollen fingers, or have asked about the brace on my hand.
People at work have varying views on RA….and I am so so tired of hearing them….sometimes I just tell them there is no cure..hoping this will stop them from giving me their remedy that worked for their grandmother that had osteo arthritis.
I especially like when someone tells me to be positive, oh yes…that is probably why I am having such a hard time with RA….
I do believe that until we have a very famous person that stands out of the crowd with RA, and speaks about it and how it affects your life, until then, the frustration will continue.
One good point is I have seen a new RA commercial on TV and
it actually made you feel the seriousness of the disease instead of making it seem as though you can garden and run on the beach…..
I do hope a cure is found so that we can all have our life back….the way it was before RA….
I haven’t read the comments, but one thing I thought when reading this is that we all have to cultivate the grace and acceptance of not being understood. I think that is one of the hardest things for people to live with and in peace. We want people to understand but they can’t. We don’t answer to them. If they judge us they judge us. It is their loss not ours. I think we need to speak up when it is advantageous too, but stay silent when you know you will be met with just a bunch of closed minds who can’t see beyond their own experiences.
It is hard to be misunderstood. We want validation. We want someone to share our pain. Thank you Kelly for giving us a place to do that.
We should keep in mind that in the past (and perhaps even today), insurance issues kept stars from announcing they had anything at all wrong with them. If Ms. Russell was not insurable, she would not be offered a movie role.
fascinating point Ann.
I am struggling with this so much right now at work. I am newly diagnosed and waiting for an appt at the Rheumatologist next month. I have told my boss about my pain and he will comment about how it’s “weird because it isn’t even that humid today.” I tried to explain that some days, some joints hurt more than others and some days there are some joints I can’t really use at all. He tells me his mother has RA but hers “never moved around like that”. I’m reasonably sure he thinks I am making it up. People are getting upset because I can’t get things done. I can’t just go install a computer for someone. I can’t walk to the mail room to drop off documents. Some days I am not even sure how I will get into the building. At the same time, I can’t ask others to do everything for me so I work through the pain most of the time. How do I explain this to people without it looking like I just don’t want to do my job?
I am so thankful to have found this website. I’m really struggling , being newly diagnosed with RA. Though it is somewhat a relief to know what is wrong with me, it’s now a new battle. I try to explain to my husband why my hands may work somewhat well today, but not tomorrow. Friends have sort of “gotten to busy to call etc..” I try not to say anything about RA, but some days I have to change even simple plans, I find myself withdrawing rather than telling someone” I can’t go to the beach, I can no longer get down to lay and get back up” Right now I HATE RA and what it is doing to me and my family. No oneseems to understand.
I have been suffering with ra since I was 15. My hands, wrists, ankles, knees, neck and back hurt all day everyday. My neck and wrist have excruciating pain as soon as I wake up and when I move my wrist they sound like they are breaking. Yet years ago when I told my doctor that I can’t keep the pain in check with ice/heat/ or NSAID (2000 mg Tylenol or 1200 mg of ibuprofen) he acted like I was on the hunt to get pain medicine I don’t need. It’s ridiculous to be in pain everyday.
Dear Kelly ~
Bravo! Great post – really enjoyed it. Definitely expressed my feelings….the angst of “to tell or not tell – that is the question.”
Thank you, and all who post here for sharing knowledge, wisdom and humor about living with RD.
Michelle
I have learned to say very little. I am a naturally outgoing happy girl. Even when i’m in a lot of pain I joke around. If I get serious about my RA I am greeted with blank stares – which hurts – so I keep it bottled up. This cannot be good!