There is an ongoing battle for understanding about Rheumatoid Arthritis and what it really is and what it mean to those of us that have it. By definition it is described as an auto immune disease that causes pain, stiffness, swelling and loss of function to joints. Um, but those symptoms sound like regular arthritis or osteoarthritis. Well the key difference here is “auto immune disease”.
So many people overlook the main and/or key difference in what we have. It is a disease and it affects our immune system. This can cause us to be constantly fatigued, forever not knowing what a new day will bring and how much function we have for that day. Not too bad some would say. What about the havoc and harm the disease itself and our medication can possibly cause to us or our organs. Note, this can include permanent damage. You see this is what it’s all about, this disease that we have.
Our pain can’t be handled by over the counter medicines so the old adages of why don’t you take some aleve or advil, vitamins will definitely make a difference, exercise more, stretch or just use the heating pad won’t get the job done. This advice though meant well just will not work for us and it shows the degree of misunderstanding there is for RA. We are forced to take medicines that we prefer not to but have to, while hoping and praying that it allows us a life that is functional. For us taking these medicines can be like a cat and mouse game, maybe it will work, maybe it won’t. This is the question we have to live with everyday of our lives. To be misunderstood on these facts can be more than upsetting. We deserve at best understanding and support and I believe the first step in this undertaking is getting to know all there is to know about this disease. The key word being disease. I think we have been robbed of so much because of the word ARTHRITIS. It has brought with it the surest form of misunderstanding and that is something that many cannot get past or care too.
Being that we are not getting a fair shot so to speak with our disease, my belief and I mean my belief is that our illness should be referred to as Rheumatoid Disease or Chronic Illness or Chronic Illness Disease. Why should we have to spend countless hours, days, weeks and sometimes months if not longer to get true understanding of what we are dealing with as patients. We have all that we can handle as it is and should not be saddled with the task of defining who we are as patients, what we are going through and having to prove that all we say and feel is true. The truth being, our lives are forever changed and that we will have to live with forever. There is nothing more we want than to be normal but now RA is our normalcy and all that it gives but who really understands that!!
Getting the understanding of what this disease is and what we go through should be a chapter written in our daily lives simply because so many do not understand it, plain and simple. We should not have to carry the added burden of trying to get understanding for ourselves since this takes so much of our needed time and energy. Sometimes because we are constantly ill we find ourselves possibly facing harsh criticism, disbelief, loss of family and friends all while trying to sustain as much normalcy as possible. Is this fair, no it isn’t but this is our reality. This should not be, we deserve better and more. My cry is not only for us as rheumatoid arthritis sufferers but for anyone dealing with a chronic disease. Still my thought is, we are being cheated simply on the word Arthritis. Is this fair?
Why is it so hard for some to understand RA and what do you think are the reasons? I’m sure we all have our ideas, I have mine, what are yours. I’m also sure we have some of the same thoughts!!!!
photo credits: ceciliajohannson/freeimages.com
October 8, 2015 at 8:12 pm
So true! Great article! My in laws (my mother in law is the mother in law from hell! She got kicked out of the group at church that does meals for funerals…so that gives you an idea), they completely don’t understand RA, and no matter how many times my husband or myself try to explain it, they just don’t get it…or I personally think they choose to not get it because they just don’t care. They think the answer to my RA is mineral ice.
Thanks again for your wonderful article.
Hugs and prayers to you!
Jennie Schlumpberger (from the myRA team site).
Sent from my iPod
October 8, 2015 at 8:44 pm
Sorry to hear that Jennie. It sounds like you just have a bad situation anyway so of course no understanding for you at all. As long as you have your hubby her understanding doesn’t matter. Thanks always for checking in.
October 8, 2015 at 9:58 pm
Very well written! You were right on so many points. I am a 3rd generation RA sufferer and I agree on if the diagnosis/term “Rheumatoid arthritis” is more of a stigma then if it was just called “Rheumatic Disease”. I am just like you, researching, learning and trying to spread awareness for so many that don’t “get it”..but realistically the ones that end up read awesome articles like this are the ones diagnosed probably more so than the ones we are trying to educate.
October 8, 2015 at 10:43 pm
You are so right. Many really aren’t interested in learning because I believe it fits their agenda sometimes to make their point. They simply don’t want to deal with it. Thank you for reading my blog.
October 8, 2015 at 10:06 pm
I have extremely severe RA. I could write a book on all the things it has done to me…from gangrene in both legs to having my hands fold over and freeze. I type with frozen thumbs. My feet and toes are dislocated. I’ve had 8 major surgeries in the last 4 years, I’ve had viral and bacterial pneumonia which caused a heart attack…I just got out of ICU where I was in for a month…I have congestive heart failure renal failure all caused by RA……The only thing I can tell you is that every day is a surprise with RA. Once you have it you own it. You need to learn as much as you can about RA so you can intelligently participate in the conversation regarding who you talk to regarding this disease…Let me tell you… I have had at least a dozen Rheumatologists in the past 18 years….I have had some very bad ones…..I had ulcers on my legs which developed into gangrene and I had 4 pic lines put in my heart, was hospitalized 10 times, spent 30 sessions in a hyperbaric chamber and I was dying. My dr’s were from Kaiser. My 35 year old was frantic so she went on line and within 2 days realized that Kaiser dr’s were treating me for the wrong disease. They were treating me for stasis ulcers but what I really had was Pyoderma Gangrenosum which is part of Felty’s Syndrome which is part of RA…My daughter, who is not a dr., found the info that info on Kaiser’s own website under rare diseases…..Go figure…I took the info to a new specialist, who put me on Cyclosporine, an anti-tissue rejection drug and 6 months my legs were healed. That’s amazing because it was down to the bone. It’s healed but the scars are Huge………Because gangrene is so painful, I was on so much morphine my bladder quit working and had to have a catheter for a year…That was awful, not to mention that the massive opiates had damaged my kidneys…Asshole Kaiser dr.’s told me my bladder would never work again…When my legs started healing I tapered off morphine. I tried pot. Pot worked great and now that’s all I use for pain…My bladder started working again……When I was just hospitalized I was at Oregon Health Science University (OHSU)..While there I used marinol, a derivative of pot, for pain. I was able to speak to many young dr/s there about pot…They all knew what it had done for me..I was amazed at how progressive these dr’s were. They all knew of the medical benefits of using marijuana….after all…seeing is believing and you can’t get much more crippled that I am. …I may be bedridden but I am still very active. I think I’m supposed to be here to tell people about RA….. I am the first bedridden real estate broker in Oregon and I’ve also been appointed to be on a governor’s commission as a commissioner, which I participate in via the internet……Life will not be the same with RA, but you can reinvent yourself every day…..And there are lots of ways you can do that. If you can’t keep working in your current field of work you can always contact the VOC REHAB office in your state. Their purpose is to help you find a job if you need a new line of work. You can even get training…………I have a 40 year history of being a business woman. I have been on many boards of director. I was a bank manager for many years, where my area of expertise was negotiation, and I previously had my real estate broker’s license for 20 years before I had to quit in 2010. I wrote a grant with VOC REHAB and was able to take 190 hours on line and was able to get my license again. If anybody needs a pep talk…I’m right here.. don’t hesitate!….Plus…I’m the new poster child for marijuana!
I am also interested in establishing a non profit foundation that would strictly benefit people with RA. There are so many things that aren’t provided for people with RA. DME, and a million other things aren’t covered by ins. There really isn’t a central clearinghouse for information.There aren’t even any camps for kids with Juvenile RA. I appreciate any feed back.
October 8, 2015 at 11:06 pm
I’m so sorry to hear what you’ve gone through and it’s a shame that you and your daughter are diagnosing you. I’m glad that you’re on the mend and I wish you well for the future. It is a hard thing trying to get people educated on RA and that includes some family members. We just have to keep working at it and that doesn’t mean it’s going to work. I hope that you continue to get better. God Bless.
October 9, 2015 at 1:41 am
I’m a 34 year old woman with 4 children. I was diagnosed with RA in my early 20’s. I’m convinced now that I had juvenille RA and it went under treated. I just had double knee replacement surgery. My knees never felt better. I struggle every day my hands wrists toes and and ankles take a beating due to my profession. Most people have no clue how I feel. Some days I struggle just to hold a cup in my hand. Everyday is different and when I tell people I have RA they roll their eyes. Exeryone of us who has this is stronger than the average person. We push ourselves to the utmost limit. Even though there are days were it depresses me I have to just say these are cards and I’m happy to be alive.
October 9, 2015 at 1:51 am
I’m so sorry to hear about what you’re going through and I really do understand. People really just don’t get it. They constantly think we are complaining and God forbid if we don’t show any visible signs because if not it can be even worse for us. Even with signs they tend to think we are complainers when we’re not. We only want to be understood and want everyone to know we may not show hurt but we are hurting. I do wish you the best because I know you have your hands full with 4 children and a job. All of this can depress you and believe me I know. There are days I wake up and feel that way. We are entitled, yes we are. Thank you for taking the time to read my blog and please feel free to message me anytime you feel the need to vent or talk to someone who understands. I will answer you back. Have a good evening, wishing you well and God Bless You and your family. Hang in there.
October 9, 2015 at 7:49 am
Thank you for this information I have something to pass on to family and friends who do not understand my condition.
October 9, 2015 at 2:13 pm
I truly hopes that it makes a difference in your life. This is what it is all about. Thank you for taking the time to read. Be Blessed.
October 9, 2015 at 4:31 pm
I think it is especially misunderstood due to the waxing and waning of symptoms. People don’t understand why I can do almost as much as a well person one day and then I’m incapacitated the next. I agree that they don’t understand how much we push ourselves just trying to have a life and take care of our loves.
October 9, 2015 at 5:05 pm
You are so right. I have been blogging for a while now and this blog out of all them has hit home the most so it shows just how much this statement is true ” people just don’t understand. Thank you for your support.
October 10, 2015 at 3:07 pm
Thank you so much Nikki for taking the time to read my blog, it’s much appreciated. I guess the word hasn’t gotten around yet. The key to it I guess is to change the word all around because we are still stuck with Arthritis and it’s truly unfortunate. I wish you well. God Bless, Corrie.
October 10, 2015 at 5:04 am
Great article! FYI – They changed the disease name to Rheumatoid Disease now not Rheumatoid Arthritis. They have discovered you get arthritis from having the disease not the other way around. I was diagnosed with RA now RD when I was 11 years old so 20 years ago. I was basically misdiagnosed but at the time they didn’t know any better. Thank god for all the research and new technology but its still not enough. They need to find a cure. I pray for cures every day, not just for auto immune disease but for all diseases. No one deserves to be in pain and suffer.
October 20, 2015 at 1:04 pm
You should try researching Juvenile Rheumatoid Arthritis in adults, information is practically non-existent. I was diagnosed 43 years ago when they had even less understanding . I’m blessed with reasonable good function, ongoing pain. My liver is damaged, probably from the meds. Did I mention, I don’t carry the marker so I have to prove it all the time. Thank goodness I was raised by amazing people and have an amazing husband.
October 20, 2015 at 1:23 pm
Hi and thank you so much for checking in on my blog and I do appreciate the feedback. I will definitely check into this and make this one of my upcoming blogs. It’s feedback from people like you that make my blog successful. I’m so sorry for your condition and I’m praying for the best for you. God Bless you and again, I appreciate your viewing and feedback.
October 8, 2016 at 2:52 pm
Iv ha RA,is,& carpel tunnel & depression for 20 years now ,I hav 5. Children & my RA started the day after I gave birth to my fourth children,th pain was so bad I needed care to pick my baby up,& even feed myself, I saw the true colours off my partner that he wasn’t ther throu sickness & health so I made him leave, he never bothered with th children since- I don’t no how I managed but annoyed me when ppl think ur moaning about lan old persons arthritis , they Hav no idea -currently 4 off my children Hav grown & all great help with my illness ,& blessed me with 4 grandchildren –
October 8, 2016 at 6:26 pm
So sorry you’ve had to suffer alone but it’s true you can’t take care of yours children and an adult who doesn’t help or understand. I hope things are better for you and I truly wish you the best. Thanks you for reading my post. God Bless.
October 8, 2016 at 6:37 pm
Forgot to state I hav o.a aswell, ,mayb one day ppl will understand that RA isn’t just the average arthritis –
October 8, 2016 at 7:22 pm
That is our hope. I have it as well.
September 1, 2019 at 10:15 pm
🙂 Thank you for providing a greater understanding of Rheumatoid Arthritis.
September 1, 2019 at 10:17 pm
Yes it can be brutal.