Posted in rheumatoid arthritis

Rheumatoid Arthritis is a lonely disease

I will be the first to admit that the physical aspects of RA play an important role in the emotional components of the disease. Everyone talks about the ups and downs of the disease forgetting emotions play an important part of those ups and downs. Quite often, outside understanding of RA focuses on the physical: Chronic pain and fatigue, limitations, loss of abilities, and the other health issues that RA brings with it.

While the physical components are important in research development and treatment of patients, it is necessary to understand that in order for patients to heal and feel better and for others to understand what people with RA go through, or any other chronic condition for that matter, it is equally important to look at the many emotions of Rheumatoid Arthritis. Maybe it’s just me, but doctors, family, and friends tell newly diagnosed cancer patients “It’s about attitude!” Go ahead and tell that an RA’er that, and actually mean it. That, my friends, will never happen. First, get people to understand the physical components of the disease, and that in itself is complex, but now, try to get them to understand the grimness of a chronic pain condition without any cure. (Well, good luck with that!)

For me, I look at the years I struggled for answers, and then my responses after diagnosis. I have gone through the emotions when I was first diagnosed, and I have gone through the emotions from that day forward. I have questioned my abilities, my responsibilities, relationships and my own personal identity – both on a personal and a professional level. My blog is a true testament of that and I have done it all alone. By alone, I mean my emotional RA rollercoaster – I rode it alone. Of course, I had the RA community of bloggers to listen and read my concerns, and I listened and read their concerns. All in all, I did it alone and so do the majority of RA’ers. If I have learned anything at all, it is that RA is a lonely disease.

RA guy commented on a previous post: “This reminded me of the long period in which I too used to believe that this was “all in my head”, when doctor after doctor used to dismiss and/or chuckle at my complaints. In the past few years since I have been diagnosed it has been all too real…but I sometimes forget about that long period during which I had no clue what was going on in my body. Hopefully more people who are going through this same thing will continue to do web searches and come across our blogs, and will begin to receive some validation of their health issues before they receive it from the medical profession.”

This comment left me thinking what more I could do to make RA a less-lonely disease for others because, even one year after my diagnosis, RA is still lonely and I know that it will continue to be. My blog, and the blog of every RA’er is important to those who are looking for answers and “validation for their health issues” and that validation is not coming from the medical profession. As a matter of fact, there is so much questioning and lack of recognition and understanding of the seriousness in the medical community about the existence or emphasis of RA and many other autoimmune conditions.

For me, I know that loneliness exists because of the ignorance of medical minds. I am not saying that all doctors are ignorant of RA, CFS, Fibromyalgia, and the hundreds of autoimmune diseases out there, I am saying there is not enough information and research, and that lack of ________________ (insert your favorite substitute for knowledge) leads to a lack of emotional understanding about chronic pain conditions including RA.

Since those well dressed suits that do not recognize the loneliness and the emotional toll that patients endure – I am going to tell them.

Rheumatoid arthritis is a lonely disease. Patients experience depression daily and have so many unanswered questions. They feel hopeless and uncertain of the future. They wonder what they did to deserve the disease and if they can possibility live one more day in pain. That is what loneliness feels like. They choose to fight, because they have no other options. It does not come easy and they wake up every morning wanting to stay in bed because getting up is a reminder of their disease. Their plans for the future have changed, but — they have made new ones. They know they can’t change their fate, but they still force themselves out of bed every morning. It is not easy, and it’s not fun, but they do it.  

One day at time, you learn that RA can only take away the things you let it take from you. Fortunately, there are people out there who understand because they struggle on a daily basis with the same things you struggle with. An estimated 2.1 million Americans have Rheumatoid Arthritis

There are no answers to RA, there are just questions. All you can do is fight and teach yourself strength, so you can believe you will make it. Yes, you fight this disease alone, but 2.1 million Americans means you are not alone. Living with RA is a battle everyday so the medical community needs to start getting it right and not leave people alone trying to find the answers. They need to recognize RA, Fibro, Lupus, and the 100 other autoimmune diseases out there and put an emphasis on research and stop telling us that our pain levels affect our emotions because we already know.

And if you don’t know where to start, start recognizing how lonely it is for sufferers to suffer alone and then start looking for answers. In 2005, the National Arthritis Data Workgroup revealed that by 2030, the number of people with arthritis will rise by 40%. It is time to stop insisting that RA is a “condition” that affects primarily older Americans and that the numbers of new diagnoses have decreased and last, the stages of RA play no important role in early diagnosis and treatment so that useless, expensive research has to come to an end. Further, stop calling RA a “condition” and call it a “disease.” No one focuses on fighting cures for conditions; that is a privilege for diseases.

There, I said it! Any other RA’ers care to add something?

12 thoughts on “Rheumatoid Arthritis is a lonely disease

  1. I can't add anything – I don't have it. I think the important thing is that you said it, and that I read it and that others will too.I have two relatives with Psoriatic arthritis, one mild and one passed away from it and yes, people do not get these disaases and they are very isolating for so many reasons.Thank you so much for being brave and sharing hugstracy

  2. You have the amazing ability to write the same thing I would like to write but can't do it without it coming out like I'm feeling sorry for myself. Does that make any sense?It astounds me to know that I'm not the only one that feels like this. That I'm not the only one with the duh moment of why doctors find it surprising that depression runs along with RA.My last rheumy refused to treat me because I was seeing a psychiatrist for depression meds. After that, I was just plain crazy in his eyes so I couldn't possibly be having pain. And he was a freaking rheumatologist.Sorry got off on a tangent there. Just wanted you to know I as always, I appreciate your writing.

  3. Thank you soooo much for speaking clearly what so many of us are thinking and feeling. I'd venture to guess that most people suffering with RA as a disease (there, I said it) for any period of time and pinpoint only a handful of people who really get what we're experiencing. While my Rheumy is wonderful medically, no one in his office including him ever mentioned the emotional roller coaster involved with a chronic disease.

  4. All I can say is "Ditto". Thank you for posting. It is encouraging to know that others deal with the same struggles. As small as that might seem, it still does wonders for the soul. Thanks again, ~Mike~

  5. It is true that living with RA can be a very lonely experience at times, but the great thing is that each and every post and comment that we share shows that we are not alone in this. Thanks for your great post today!

  6. It was certainly interesting for me to read that blog. Thanx for it. I like such topics and everything connected to them. I would like to read more soon.

  7. What you wrote here resonates with each and every one of us who also copes with this disease(!) every day. It frequently IS lonely, and while they try, family members and friends have a hard time understanding it. I'm right with you in hoping that the medical profession and the public at large will one day be more informed — and perhaps more empathetic. By writing about it, using the Internet to get RA out into the consciousness of the rest of the world, we're doing ourselves, each other and countless others to come a great deal of good. Thanks for a fine post.-Wren

  8. I did not expect such an overwhelming response. I was tired of feeling like this was a battle that I was fighting alone. I try not to feel sorry for myself so I raise my voice and say how I feel about the issues that hit a nerve. It is hard for anyone who doesn't suffer from chronic pain to get it – not just the physical pain, the emotional pain too.

  9. Thank you for putting this into words. I have lived through what you have written, but could not have put it into words this well. It is difficult and yes, lonely at times, but we keep going on because we have no other alternative.

  10. It is certainly interesting for me to read the article. Thank you for it. I like such topics and anything connected to them. I definitely want to read more on that blog soon.

  11. Wow! The first paragraph describes to a tee what I battle silently everyday. Those moments when you first wake up and it feels as though your body is on fire or that you may be paralyzed. You realize that you must get up, but the pain tells you to stay put. But you get up… and it may take an hour and a half to get ready to go somewhere, but you do it. Its a big accomplishment that most don’t even think about…. and yet time goes by in your morning, and by the time you start to feel somewhat normal, you feel you have done nothing, and no one understands why. You go about your day, hurting, tired, and no one knows. You do what you can, but you know your limitations. No one seems to notice or step in to help or ask how you are feeling. But its a silent pain. I think that is where the lonliness comes in. And then you are so tired at the end of the day, but you can’t sleep for hours, because you toss and turn in pain. You wake up again and do it all over again. You just try to enjoy each day as it comes, but you do feel limited, uncertain, and sometimes helpless about the future. You miss the life you once had, and what you used to be able to do. You are no longer invincible or feel like you can conquer the world. You just take it one day at a time and accomplish what you can for that day. Sometimes you cry, and then you feel guilty for feeling sad or lonely. You cry alone, because no one would understand why you are crying. “At least its not life threatening like cancer” you may hear someone say if you open up and tell them about your disease. You just feel misunderstood. So, you keep it to yourself most of the time, and try to carry on with a smile. Yes, you got it right. Its a very lonely disease.

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