How Rheumatoid Arthritis Impacts Lives
What kind of an impact does Rheumatoid Arthritis have on a life?
It seems impossible to explain all the impact that Rheumatoid Arthritis has. On a good day like today, I can hardly believe what I have been through myself – although I have lived it. This video bears out my memories. It has been real. And it also proves I am not alone.
Hearing the men always makes me sad. I was especially moved when the first guy said he “always has to depend on someone now.” Ouch.
Of course, the person that I identify with the most is the mum with young children. Let’s paint what she said on a billboard! “There is nothing normal in our lives anymore.”
Many tell me of family members or friends who just cannot get their minds around the ways that Rheumatoid Arthritis changes our lives. Listen to what else the lady said, “I would like them to really think that there are some people in this life that can’t even lift the duvet over themselves when they are really ill. And it’s difficult to understand that lack of strength.”
Indeed. It is difficult to imagine. And yet I remember when I could not pull up the duvet. Sometimes, I cannot take hold of anything, even a thin bed sheet. Like the girl in the video, I remember not being able to eat because of my jaw. More recently, my jaw would open, but I could not hold utensils and had to eat with my hands.
The impact of RA in a surprising place
Today, someone told me the story of a lady rheumatologist. She considered herself to be extremely compassionate and gentle, suggesting exercise would help her patients. She saw herself as empathetic and kind. She thought that she understood Rheumatoid Arthritis as well or better than her patients did. And then, one day…
She got RA. And apparently, it was the severe Rheumatoid Arthritis that does not remit with treatment. She was embarrassed at her prior advice. She realized that she had been insensitive to her patients by not realizing the impact of RA on their lives.
She now realized that she had previously been insensitive. She concluded that no one can comprehend Rheumatoid Arthritis unless they have it. Sometimes, it really does seem like contracting RA is the only way.
But we can still try. I certainly tried all day again today. Several remarkable conversations left me hopeful.
Recommended reading:
- Medical Records Tip for Rheumatoid Arthritis: Read the Doctors’ notes
- The Rheumatoid Arthritis Curriculum
- Do You Take Methotrexate for Rheumatoid Arthritis?
Once people understand the osteoarthritis and rheumatoid arthritis are as different as night and day we be able to get our point across. People automatically hear “arthritis” and think “oh I have a touch of it myself, my knee, or my finger, etc.”
The difference between the two should make people wonder–should rheumatoid arthritis be called by a different name, maybe get rid of the word arthritis. Have people think in a different direction. Maybe if they don’t hear the word arthritis there won’t be the automatic connection with osteoarthritis. RA is more than arthritis, it’s a disease. Lets see: Rheumatiod Disease, Rheumatoid Inflammatory Systemic Disease (RISD), Rheumatoid Erosive Disorder (RED), Auto-immune synovial disease (AISD), Protein Based Erosive Disease. Just to throw some out there. I like the (RED) one that’s catchy!!!! Could catch on!!! Whatcha think?
I really apprieciate all that this web site has done for us ra’ers i would only like to add one thing that is how frustrating it is to help people understand how confusing this disease is to us, how the pain moves from different joints sometimes its one place another time its some where else sometimes we can walk and sometimes we cant, sometimes our hands hurt other times there fine its very hard to help people get this.any ideas? much thanks and apprieciation to all.
marie
Thank you, Marie. That is a common problem. It does not seem right, does it?
Yes thank you for this article, i had a friend come up to my wife, who understands the disease as best as she can, and so he says to her, and he is a painter, , Now i know how Kevin feels and shows her ,a finger and says this really hurts, My wife said ,No, you can’t know how Kevin feels, RA is a whole different disease than what you have, because of this website my wife understands RA more than ever, and it may of saved my marriage, as for a long time she felt i was able to do things even though i was never lazy, so this put a stress on the marriage as i was a 7 day a week worker doing heavy lifting to asking someone to open a soda bottle, and i’m 6 ft 2 225 lbs anyway i think you understand what i’m saying, Kevin
I am so glad I was directed your way. I was diagnosed In Feb. and run off of my job because of it.
I did not know that the hoarseness was part of it, now I do.
I was in Savannah working, having been laid off from my job here in Ohio for almost 2 years. I felt my neck “give” one day at work and it went downhill from there. I had no idea what was going on with me, I just thought I was too old to do the job I was on.
What I don’t understand is since I told the PCP and the Rheumatologist about my neck, why they have never x-rayed it?
I have also had pain in the back of my chest since March and the Rheumatologist shrugged his shoulders and said he didn’t know why I had that. I mentioned it to my PCP because we lost my Dad to Mesothelioma 5 years ago and she said “we are only dealing with one problem at a time” WTH?!
I have an appointment at the Mayo Clinic in Jacksonville in a few weeks. You better believe I will be bringing this up. I also have issues with my eyes and eyelids.
My question is, Do I have anything positive to look forward to? The big one is, How do you get people to understand that you are NOT faking it? Your insight is appreciated and I will help spread the word for a name change. Genghis Khan might be appropriate.
Dear Lisa, well I can see you haven’t lost your sense of humor! It will be a big help with rheumatoid disease.
Hopefully, Mayo Jax will too. Yes, mention every symptom – maybe make a list to give them.
“Positive to look forward to”? Yes, of course.
First, it will probably not stay as tough as it is now. Either you’ll find meds that helps at least some, or the disease will probably let up on you somewhat. It tends to wax and wane in most people. So even if you don’t get a remission, you’ll probably have better days, and hopefully some really good days.
And, new treatments are in the pipeline.
And, remission is always my hope.
And, in some ways we adjust – ways we didn’t want to, but we do become more able to tolerate the pain, and the other unwanted change.
How do you get people to “understand you’re NOT faking”? If they are determined, you might not. There are people who dismissed me because they couldn’t accept it. I don’t talk to them much any more. There are new people in my life, some as a result of living with RD – who do understand and bless my life.
There are articles here you can send them if they are open to learning. There’s an email this post button below each article.
Hi to my fellow RA ers,
It has been a nightmare just trying to accept the whole idea that I have a non curable illness and all I think about is can I get it to just stop. At times the affects of RA frighten me. Last week I had severe deep bone pain that rendered me crippled. I pushed myself through as I must work and keep the family going. Its funny how people take walking for granted. I sure did until last week. This illness rears its ugly heels and reminds me whose bossing me around. I try to slow down, eat fresh foods, get rest and relax . The crazy part of all this is that it attacks you when you are not ready and wham your whole day is gone. My husband acts like he gets it but he is clueless how I feel. The main thing is this… people think we are normal, but under the flesh is this nasty illness that plays havoc with our lives. Im sorry to sound so upset but most people dont understand me.. I pray everyday that I can make this go away… Im afraid Im fooling myself.. Its nice to know im not alone. Thank you for this web site.
Like day and night one day you are in control the next day you are not. You think I just need to exercise and eat better and your discomfort will go away. So you start doing so only to tear your ACL with no concrete activity to pin it to. Now you are at the point of no return however you don’t know it until you can’t heal properly and are almost crawling by noon everyday struggling through therapy every other day just to get back where you were on your last visit. Only to have some tell you are using your cane improperly. Little do they know you are doing your best to keep upright. Nobody understands your plight. In fear you will mess your other knee up before you get the other back on track. The doctors practice on you while you try to put the pieces and your self back together. It’s 2016 and I am still not back together. Kelly I hope you are hanging in. Kelly how do I find out if I am still on the mailing list. This is my first comment not sure if there will be more. I am not a public person and have a different faith. The site is very encouraging as no one who does not have this disease can fully understand it.
I was diagnosed in 2013.
Oh my oh my – still reading in Australia here …
No formal diagnosis (years ago arthritis and OA diagnosed, last year osteoporosis diagnosed, this year reverse cervical spine curve, some DDD and Tarlov cysts /perineural cysts found) years ago ANA and RhF showed up with something called Sjogen’s mentioned … Now I know why I sometimes have to use eye drops and some kind of mouth moisturiser!!! WTH!?
Just years of bilateral pain, weakness, clunking and creaking and red swollen joints that come and go and have gradually spread over 30 years. No doctors have ever put 2 and 2 together and I never felt I knew enough to make a fuss – plus never had kids … That would had made everything so much harder! I can’t imagine how you guys do it!!!
I LOVE IT!You are SO right! We NEED to take arthritis out of it completely! Because SO many people DO think they have the same thing, and it does NOT compare! I still have not figured out how to deal with that?! Just try not to tell people! I vote for RED! ?Between the way it feels, the fever, swelling, my plaquenil has made my complexion red, skin burns anywhere the sun hits it, even for minimal amount of time in the sun (i.e.driving in car) and it makes me break out in a sweat for about 2hrs EVERYnight after I take it, so RED!!! ? SO YES, Let’s Do it!! PERFECT!! PERFECT!! PERFECT!! Ahhh! Thank you for making my day! Where do we start?? Write the Arhritis Foundation?! ?
hi Linda. You might want to read about RPF here: https://www.rawarrior.com/tag/rheumatoid-patient-foundation/
or go to the site: http://rheum4us.org
The Arthritis Foundation is not supporting acknowledging that arthritis is only a symptom of rheumatoid disease. Of course it’s best for them the way it is now. The evidence quoted in my upcoming book should settle the matter for anyone who looks at it.