The Now-I-Understand Abbott Suit for Rheumatoid Arthritis
What’s the one thing I’ve said more than anything else over the last five years? “No one understands.”
I sigh it quietly. I mutter it under my breath. I exclaim it loudly in frustration. I struggle to say it through tears.
But I don’t think I’ve ever blogged it.
Who doesn’t understand? The professional people I associate with who act like it’s a big shock if I mention any pain or symptom of living with RA. Most of them have no earthly idea, as my mom would say.
“No one” is a big group, isn’t it? Not even medical or health organizations that I communicate with frequently. Not my neighbors. Not the media. Not the cashier. Not the church.
Not in a house. Not with a mouse. Not in a train. Not in the rain. Not on a boat. Not with a goat.
Of course they don’t understand. It’s impossible to understand what it’s like to have weak, stiff, and painful joints all over your body, right?
Abbott Denmark’s “arthritis suit” aids understanding of RA
A reader sent this video of an empathy suit for people with RA / JRA. With the suit on, healthy people experience some of the symptoms we live with such as stiffness, limited range of motion, lack of dexterity, and difficulty with balance.
There is one missing piece: pain. If pain were included, it might be a sympathy suit instead of an empathy suit. But it would be inhumane to make someone suffer this pain intentionally.
Abbott Denmark brought the “arthritis suit” to 14 year-old Amalie’s school so that her classmates could experience the challenges she faces with Juvenile Arthritis. Challenges she experiences whether she’s in a house or with a mouse or on a boat or with a goat…
Why have only 1,000 people seen this video? Let’s change that. Are there more of these suits? Will Abbott give one to the Rheumatoid Patient Foundation (RPF)? If you work for Abbott and you’re reading this, please contact me.
Recommended reading
- The Goal with RA Is Not Perfection: Don’t Give Up the Things You Love!
- Having a Cuppa Together: a Rheumatoid Arthritis Meme
- Problems with Preventive Care and Rheumatoid Arthritis Mortality
OK I get it! I have ra…yes I get it. But I say that all rheumatologist before getting their final degree certification should…rather must wear this suit for at least a week straight. But I do differ with you on the pain part. I wouldn’t want the pain to be a week straight but surely an hour straight. Maybe then they would understand the importance of contacting your patient back when they are calling in pain and need help. So much has to change…so much.
Deb, I was mostly being sarcastic. I was blasted by some a couple years ago when I said that I’d like to LOAN my RA to someone for a day. The person I chose? “Whichever doctor is currently head of the ACR because it would do the most good.”
Anyway, I agree w/you emphatically. Wish I’d thought of that use for the suit first. Great idea.
That is an awesome suit! I wonder if we all blitz Abbott could we getting one of these incredible suits? It could go a long way to getting awareness out of the text books and into our towns, cities, and back yards!
Yeah!
Perhaps Abbott could add small pins inside the suit so every time you move with the suit on, you would feel at least some pain. It wouldn’t be the same as the all encompassing, stabbing shooting, take your breath away pain that most of us feel, but at least it would be a start.
Kelly, i agree with you about loaning out what I suffer. I sent an email to a friend who made an extremely rude comment one day when I was in disastrously evil pain that said: “The pain I experience I wouldn’t wish on my worst enemy, but sometimes I want those who don’t understand what I go through to endure just one day of my pain.” Sad, but true.
Joe
Hi Kelly, Thanks for the post. The title threw me for a minute. My mind went first to a law suit againt Abbott Laboratories. I kept wondering how someone could sue a company for not understanding? 🙂
This video totally reminded me of the birthing classes my wife and I took before the birth of our first child. All the dads in the class wore a pregnancy vest to simulate the extra weight and change of balance of a pregnant woman.
1) I tried to use the embed code to put this in my own blog, but I can’t get it to work – did you have to modify it to post it? Mine is telling me the “param” tag is broken.
2) I’m glad I caught this post of yours. I think the suit (and the whole idea) can go a long way to conveying things about the experience of living with any one of many invisible illnesses. I have Sjogren’s and Fibromyalgia, and there are plenty of days I go through some of the same symptoms. I’m sharing this video with my networks now:) Thanks!
Hi Jenny, this is marykhris, Kelly’s daughter. Try going back to Youtube and watching the video again and then try again to copy the embed code (where youtube gives you one) – it doesn’t always work the first time, it didn’t for my mom either. But it did work when she tried again, so maybe try again and see if it works this time. hope it works! 🙂
I’ve seen empathy suits simulating stages of pregnancy for men to wear (Phil Donahue did it on his show decades ago) and suits simulating the limitations of senior citizens for young people to wear (demonstrated on Life Part 2 on PBS). This was the first I had seen/heard of an empathy suit for RA. Granted, it’s inhumane to deliberately inflict pain on another; but that is definitely the “missing component” for a healthy individual to get the full RA experience.
I can think of some people I would love to put into this suit — just to give them a small sample of what Life With RA is like. These people still don’t understand that RA, while invisible to the eye, is a disease that has made a huge impact on my life, physically, emotionally and psychologically. If they can just sample a little of the physical changes, it might open their eyes a little. (One can hope)
Wow, that suit could really begin to help others understand what we go through…Now, just my thoughts on it…I have two conflicting thoughts when I think about this: First, there is “no understanding unless the pain is there too”, since without it, the suit only shows the frustration we all live with daily! With pain added, people could truly understand that it isn’t only frustrating, it is downright exhausting to deal with both things, day in and day out! Not that I would ever wish this disease in its entirety on anyone. Second, I don’t think that 20 min in a “suit” can totally get the point across, as those of us who suffer with RA (plus other diseases), can’t just “take it off” when we are sick of it…we “wear the suit plus pain” 24/7…I think it definitely will breed empathy, and it is definitely a great start…however; accessibility to the suit is another whole issue…I agree, how awesome to have one available as a resource at each of our “chapters” or on Mobile Units that make appearances at local schools!
Thanks, Kelly for this post. – Just watching that video, and even without wearing that special arthritis suit, I now start to get a sense of what it means to suffer from rheumatoid arthritis … thanks for that link!
Best wishes
Tobias
What a wonderful thing! It might be a good idea to let them feel the pain too, if only for a few minutes. People deserve to a chance to see what we live with daily. They *need* to know.
Amen to all of the above, I couldn’t agree more with each of you. I have lost the closeness to a dear friend who couldn’t understand why didn’t I just drink cherry juice for a cure, I shake my head as I write this.
Its a good idea, as metioned without the pain its lacking one important thing but still its a good way to help others to understand better.
Today on “The Doctors” Dr. Sears wore items that helped him to try to function as an Alzheimer’s patient. It was very emotional for him. He realized that it was only temporary, and knowing that those with the disease never get to avoid those symptoms was very powerful.
Maybe one of the doctors on the show would be willing to do a short segment using this suit to help educate their audience about RA.
Until I was diagnosed 2 years ago after having symptoms for the 3 previous years, I didn’t know anyone with RA. If anyone had tried to give me the “facts” about the day-to-day life with RA and the indescribable pain, I’m sure I would have thought they were exaggerating a lot. Unfortunately, I think only those who live with this 24/7/365 really understand all that RA means.
I just found you all recently. Thank you all for sharing your stories. I now know that what I’m living with is, unfortuantely, shared by so many.
This video brought me to tears. I really am not sure why. Because its a start? Because we all crave empathy? Because we have all be there trying to explain to others what it is like to “push thru” what is expected of us in our daily lives to please them, ourselves and others? I don’t really know. But I’m hope that we can see this suit here, in the United States. I would love to help put that together with some others if at all possible.
I think the biggest thing that touched me, was that someone actually CARED enough to make this suit in the first place! It was also interesting to see that balance is mentioned. I don’t remember reading about our balance being affected (I probably did but can’t remember). I’ve noticed a huge difference in my balance and really hadn’t put it down to RA. I had NO idea what it was from, now I don’t feel so bad that at times I stagger like a drunken sailor, without the fun of being drunken OR a sailor :P. Thank you Kelly, for posting this.
My thought on the pain part, is that if pain was included in the ‘experience of RA’ with this suit, no one would try it. At least not very many…
Wow! I would especially like to put members of my immediate family into one of the suits just for an hour or so… It would make my life a bit less lonely if just one of them could get it. I have a tendency to get cranky when I am tired and in a lot of pain. Sadly, my daughter, whom I work with, just thinks I am negative. I don’t see why I need to defend myself to them.
This is a bit off the subject but I watched an episode of House Hunters on HGTV tonight which featured a young woman with JRA and her husband house hunting for a ranch house as she could no longer climb stairs. They also looked for wheelchair accessibility. Good Show.
Great video and love to see the impact a little understanding had on this young lady. One thing that is frustrating, though, is that the “Also check out” links that pop up after the video include one showing how to “Cure Arthritis with Diet.” ARRGH!! Breathe… baby steps, right? Baby steps…
How very true – everyone says to me ” yes its the weather” and I want to screem. I find I cant work like I use to and even my husband keeps asking – when are you going to work? heck _ can barely get dressed! has anyone else become so disabled they cant hold a job. I feel like Im being lazy but – ugh – just every day is a coin toss.
The statistics on disability aren’t great. By ten years, only half with RA are able to work. But it’s obviously much better for you if you can possibly find a way. I’m sure you agree that it can be very depressing when we aren’t able to do much. We all do the best we can…
Of course you aren’t being lazy. I hope your husband will be able to learn more about RA and that you are NOT the only one who has trouble just getting dressed or eating…
Kelly, you are not alone in not being able to work. I am on disability for that reason. It really is a crap shoot from minute to hour, let alone day to day whether I will be able to work or not. If I could just find a job where they didn’t demand I be there every day, or would let me choose the days I work then I could go back to work. Unfortunately, there aren’t any jobs like that, that I know of…even self-employment requires you be present if you are to make a success of your business. RA has ruined that part of my life (along with all the others).
Kelly it is so hard for us that are trying to work with RA. I am finding it harder and harder to make it through the work week. I have to get up at 2:30am to get everything moving and allow myself time to get ready for work, then my husband and the rest of my family cannot understand when by 8pm I am ready for bed. I have tried to explain to my dr. how by Thursday I can hardly keep it going and then by Friday it is all I can do to put one foot in front of the other, I am exhausted. The dr. Says I need to think about quitting work. Number one, I am fortunate to like my work and I am not ready to give this up. Number two, if I quit I lose my insurance plus my income so how will I pay the dr. advising me to quit. The dr. just looks at me with no other suggestions. I have always been the doer for my family and they just expect me to continue, wish I could. I have no answers but know you are not alone out there. Not much help but hugs to you.
sounds nearly impossible Becky. I truly believe many of us push ourselves to the limit every day even when we don’t say so to others. It is what I see in myself and what I read so much in letters.
I think that we shouldnt give Abbott to much praise! after all they do charge 1800.00 a month for thier shots! Big business trying to dumb us down with thier suits! They should lower thier price or at least quit changing the “recipe”one little bit cause then its thrown back on the Brand Name list! They should put in the suit a little bit of electrical shock and some kind of punch to feel some of the pain we have.I dont know! What i do know is ive received more help here in just a few days than 6 yrs with a ra doctor! Thanks Kelly You have saved my sanity!
I’m in a different position. I recently lost my part time job so I filed for unemployment while I try to find another one. I filed for disability last Nov and am on my first appeal. If I work more than 30 hrs a week or make more than 720 dollars a month, I no longer qualify to apply for disability. But I have to be looking for full time work as well as part time to qualify for unemployment. This is crazy!! I am not disabled until SS says I am. I wish I could work more, we are in danger of losing our home. But just when I think maybe this new medicine is going to help, I have several days of nausea and reflux so bad I can’t lay down to sleep. All of my joints start talking to me, toes screaming, oh well you know the routine. I played dominoes at my church two nights ago, my hands are still swollen. But I don’t see where I have a choice now.
I went in to interview for a position doing clerical work at an insurance agency. One of the partners wanted me to consider becoming an agent, would have to go to school which they paid for at a large expense to them. I tried to explain that I could not in good conscience accept because I doubted I could even complete the school and even if I did he would not recoup his investment from me. I explained that I have RA. He remarked that RA isn’t very serious, is it? After all don’t we all have some form of arthritis at our age??? I tried to explain, don’t think he got it. What I should have told him was since he was the commercial side to talk to his partner about how difficult it would be to insure me with health insurance. Maybe he would have got it then.
I am in school as a full time student online. I am trying to get my degree in Health Information focusing on Medical and Insurance Billing and Coding since there are positions where you can work virtual. As my disease progresses I want to be able to support myself. I have no intention on staying on disability if there is any way around it.
My sister was so nice the other day. When I was telling her about the very low remission rate and how the TV ads are so misleading on how many and how much patients are helped, she told me to be positive maybe I would be one of the 6%. Yeah I kind of wanted to slap her, except it would have really hurt my hand and would not be the right thing to do. I mean really, I am on month 7 with MTX waiting for an improvement. I still take 20mg a week, even tho it makes me so sick, I feel that’s being about as positive as I can right now. The really sad thing, our Mother has RA(mainly in her hands and knees) and now she is starting to show some signs of it. I’m afraid she will get a true understanding down the road. Lord, please help me not to tell her to be positive then, please!!
“might” be in pain! IN PAIN, no might about it!
Kelly,
Is there any way that the Abbott suit can be rented? I have a pending EEO mediation in regard to my RA and as part of a settlement agreement, I would like to request that managers attend sensitivity training with the requirement that managers wear the suit for a prescribed period of time. I’m not sure if they would agree to such a thing, but it’s worth a try and it’s proactive. Do you know who I would contact for such a request?
We have borrowed it but I don’t think they could rent it. I wonder if they would consider lending it for sensitivity training… Email me & I’ll try to find out who you contact these days. If you succeed, I’d be willing to help with the sensitivity training if I could get there.
Hi
The video is gone. Is there somewhere else I can find it?
Arnie, YouTube takes down videos sometimes & it’s hard to chase that down with hundreds of pages –
But I found another version of the same video & replaced it with that one. Good story. Enjoy it.
Amazing idea for patient awareness campaign
How can we get it?
Thank you