Are You Talking About RA?

RA Guy PhotoOne of the most common statements that I have heard over the past few years, from people living with rheumatoid arthritis, is the importance of trying to make others–family members, friends, co-workers, and complete strangers–aware of how severe an impact this disease has on our lives. Actually, what we need goes beyond just having people understand the nature of this and other autoimmune disorders; although without a doubt, this type of education is a good start. What we need is support, a strong network of individuals who continue to let us know that they know what we are going through.

Sometimes the best support in the world is that email from an old college classmate that arrives, just as you’re dealing with another challenging start to your day. Other times, support includes a small token of financial help, which is profoundly appreciated especially when money is low and you’re wondering how you’re possibly going to pay for all of the medical expenses which never end. This support need not always be based on the pain and disability which, at times, overwhelms our lives. A simple conversation, joke, or anything else that takes our minds momentarily off our constant struggles…well, these can be the greatest gifts of all.

By authoring this widely read blog over that past few years, I have been fortunate enough to receive this support from individuals living all over the world. (Well, mostly in English speaking countries such as the U.S., Canada, U.K., Australia, New Zealand, and South Africa.) And even though I had not kept the fact that I live with RA a secret in my personal life, the ironic thing is that I had never really introduced this blog–or my disease–to the many, many people who have been a part of my life during one time or another, such as high school friends, college and grad school classmates, former professors, past co-workers, and extended family members.

All of this changed yesterday, though. In my desire to share my “Hope! Unlimited” mug with as many people as possible, I started digging up old emails and reaching out to friends. Even though I occasionally posted links to certain RA Guy blog posts on my personal Facebook account, and my image shows me walking with crutches , I realized that I had never really come out to many people.  Although I often post a status update about the pain on a particularly bad day, I had never directly stated: I live with RA, and RA is [insert simplest explanation possible].

It feels good. It’s nice to know that today, they are many more people reading this blog…and they know exactly who I am. Sure, this blog is personal as heck at times, and I make no attempt to hide the struggles, both physical and emotional, that I face on a daily basis. But this is what it takes to increase awareness of this horrible illness with which we live.

It think the inherent reaction that we shouldn’t talk about certain things is always going to be there, but this is just one more challenge that we need to overcome.

We must keep talking about the challenges that we encounter from this disease for which there is no cure. We need to describe the good, the bad, and everything in between. We have the right to vocalize the support that we are looking for from others, whether its from our family and friends, or from our governments.

More and more people are listening. Are you talking about RA?

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

40 Comments
40 comments
  1. Elisabeth says:

    I think you are right about sharing the good, the bad and the in between. I think it’s important for people to realize that not every day with RA is awful for everyone, but that on the good days it doesn’t mean you are cured. People see you on a good day and underestimate the seriousness of the disease. Yet my life is not over, there are things I can still do, and my goal is to have more of the good than the bad. That’s why I appreciate your blog, you appreciate the good days and somehow find meaning even on the bad.

  2. daina says:

    Thanks so much for this. I was speaking with a friend yesterday and talking about just this. How so many people with RA, JRA, etc….don’t talk about it. Some people are embarrassed (as I used to be, but have gotten over), some people just feel like they’re complaining all the time (which is my problem right now as I’m in a particularly bad flare), but in anycase, we just don’t talk. Some people just don’t have anyone to talk to. This is why I love your blog, you give people a way to know that they aren’t alone.

    Thank you!!!
    Daina

  3. nan says:

    So nice to read another persons take on this! As you know I have been considering this very issue lately partly because it was a topic last week at our RA Support Group meeting. Nice to connect such a handsome face with your name, finally! Take care. Nan

  4. Tod says:

    My problem is my family is sick of hearing about it. I’m just a whiner or Man up. The crutches are just for sympathy.

  5. RA Guy says:

    I too agree, the most common reasons why I haven’t talked about RA in the past were 1. I was embarrassed, 2. I felt like I was complaining too much (I still feel this, quite often), or 3. I assumed that other people should just outright know exactly what I was going through.

    @Tod, I’ve learned that there is always someone who is willing to listen to us, although it may now always match up with our idea of who we’d like to be there listening to us. Have you given Facebook, Twitter, and all the other blogs a try?

  6. Carla Jones says:

    Thank you for this, “real” take on RA. People need to wake-up to the fact that this is a brutal, unpredictable disease. Yes, we do need to talk about ALL aspects of the disease, as uncomfortable as that may be for some people. How else can we inform patients and prevent severe complications, attributed to the disease?

    Thank you again for your advocacy, and for educating many others in their life journey, with RA. Understanding, can and does help bring a sense of peace to every situation. God bless you!

    Truly,
    Carla Jones
    Author of, “Death by Rheumatoid Arthritis”

  7. Daniel says:

    I totally understand that. There are days like today that regular living is hard. high pain killers and still there it is. I have had R/A now for almost 29 years. It has just about destroyed my upper body and now is working on my lower. God Bless to all that deal with this Disease day in and day out.

  8. Katie says:

    My reasons for not talking about it enough are 1. It sounds like I’m complaining too much, 2. because of number 1, nobody takes me seriously anymore and doesn’t listen to me. 3. I’m just tired of having to explain R.A. to people for the umpteenth time…

    I have been trying to talk about it more on the web because I seem to find more understanding there.

  9. Dawn says:

    Sharing the struggles, good, bad, ugly, etc.. helps others get through what they are going through. I remember when I first got sick….December 1987…..and for YEARS I was ashamed and felt like I was the only person going through all this and man was I wrong. It took me over 15 years of living with this to finally open up and start talking and now I joke about it to cope! Thx RA Guy!

  10. Laura says:

    I recently realised that I have lost ALL the friends who I did not open up to about living with Still’s Disease (Systemic RA) and those that I am closest to are the ones that I have opened up to and have tried to understand. It’s a difficult step to take, due to those three points you named above; but we can’t grumble about people not understanding if we don’t give them the insight, right?

    Happy blogging :)

  11. Mark says:

    Good point. I’ve had this nasty little disease for some 12 years now. Been on methotrexate most of that time, although initially started out on minocycline. That worked well for a year and then pooped out. In the last 5 months, I switched to Robb Wolf’s Paleo Solution diet and have ramped up my fish oil intake considerably. Doing so has brought my diabetic situation under control and has to a great extent eliminated my flaring. Have reduced my metho from 22.5mg/week to 17.5mg and am slowly trending downwards with that. Worth checking into if you are at your wit’s end. I was flaring badly, seeing my fasting blood sugars creeping into the 150′s and decided I had to do something. My fasting sugars are now around 95 and my flaring has largely disappeared. I consume 4 tsps of Barlean’s liquid Fish Oil daily (actually tastes good) and consume a few caps of Dr. Barry Sears Polyphenols Plus which are strong antioxidants and help to keep the fish oil from oxidizing in my body.

    I sympathize with anyone who has this and know full well how hard it is to explain what this disease is like to someone else – most will just say – “yeh, I have arthritis, too”, not understanding how vastly different RA is from OA.

    Mark

  12. Terry says:

    I talk about RA at work with people, not on a complaining basis, just trying to let people know what it is like to live with it. Most people really don’t know what it is like and are receptive to hear us. This past weekend a girl I work with talked to me about her aunt who was just diagnosed with RA. We talked for almost an hour, she took notes , thanked me and gave me a hug. It’s nice to know that some people do listen to us.

  13. Dottie says:

    I am so blessed to read everything you have written on this blog…you are a special human being…thank you always!!!! Please never, ever stop writing! Cuídate mucho!!!!

  14. Deb aka murphthesurf says:

    Heh! You are out of hiding…love your pic! And yes, we need to talk, talk, talk and talk some more. Maybe then we will get the funding put into research for a possible cure. I am soooo hoping in my life time that we get close to a cure for these autoimmune diseases. If anyone asks..I tell now. Didn’t in the past but I feel I owe it to all of us. You are an inspiration! And very handsome also :-)

  15. Jody says:

    Thanks for sharing. You are a very special Guy. I talk it about it plenty because I am still pretty much in shock….. not so sure anyone wants to hear it though. I guess I understand being on the healthy side and not really getting it. Years ago my aunt, long time RA sufferer, told me she didn’t have the internet and an email address because it was too painful to type. I thought, really? It’s really sad it took me getting “it” to get it.

  16. Stephanie says:

    RA Guy you are my hero! Thanks for sharing with us all. Every day I wonder what the day will bring. That is one thing that none of us really ever know however I’m speaking about RA and RA only right now. As we RAers just never know when and what to expect for each day. I am thankful for friends like you and all the RAers out there that support me with kind words and just sharing all their worries, pains and knowledge along with their daily adventures with RA. Without all of you sharing we would be in the dark and unable to face each day. THANK YOU ALL! <3

  17. Jan says:

    RA Guy, you are definitely my hero, too. Thank you for continuing to share your experiences and thoughts. I realize that I don’t want to complain, so I don’t say much to friends. When they ask me how I am, I say “Ok.” It’s only a few who will keep me on task and ask how I really am. . . .

  18. Lene says:

    Congratulations! I understand the need for privacy must at times prevail, but really… there’s nothing like the freedom of not having to hide.

  19. Russell Nulty says:

    Thanks RA guy! When I was diagnosed, early last year your blog was one of the first I followed. It seems that you were telling people the story from a day to day, personal view, which I’ve found is the best way to spread awareness. The pain is somewhat managed now for me, but the fatigue is my major issue, and causing work problems. Nice mug! (I mean the cup), thanks again :)

  20. Lana says:

    Thank you for being so vocal about RA. There are times where I give up because it feels everyone thinks I am complaining. At the same token, I appreciate the people that really truly want to know how I am doing. The longer I have RA, the more vocal I am about it. However, I am more vocal amongst those who actually get it rather than those who don’t. I think you are absolutely right about the importance of talking about the challenges – the more people in our lives understand including co-workers, bosses, friends, family, etc.

  21. Sid says:

    Hi RA guy,

    Just found your blog, at a dark moment, and want to thank you from the bottom of my heart.

    Great superhero stuff!

    Very encouraging.

    Happy 4th, fella.

  22. crackedbetty says:

    I’ve lived with RA for seven years and was really reluctant to talk about it until I realised that hey, this is a part of who I am now. All of my friends, colleagues and family know about it and they are generous enough to ask how I’m doing and what do I need help with. Honesty can be a really wonderful thing.

  23. Jerry LaBathe says:

    Thank you for you blogs they remind me that I am not alone in this fight. I love the fact that you put it all out there and I can put my all out there also! Keep up the good work and I will continue to pray for you!

  24. Laura says:

    Thanks for all u do! It’s hard to get people to understand the reason why you keep posting and statements that your always putting out there…. They think it’s a nucince :( . How can you get them to accept your efforts as good?

  25. Tonya says:

    Verry good post! it’s really hard to admit that you are struggling sometimes. On one hand you want people to understand what you are going through, so they can understand you, but on the other hand you don’t want the pain/struggle to become all you are known for. I know I don’t want NO PITY! But It just seems like either people are underestimating what you are dealing with or overestimating it. If you talk about it too much then you’re a complainer or can’t handle it and if you don’t talk about it then people don’t really know what’s going on..I’m glad I have a supportive family, don’t know what I would do without them <3

  26. Moselle says:

    It’s always good to take a peek behind the superhero mask. You do such real good, and there are many of us out there who appreciate it, although we don’t always make it clear (or comment).

    I don’t have the luxury of hiding the fact that I have RA, it’s obvious that I am sick to even the passing stranger. But I have tried to hide as much of it as possible to my children. That all changed last summer when I quite literally fainted in front of them. I came to and the first thing I saw was my kid’s absolute terrified expressions. I have since been trying to be more open about it. It’s hard, the instinct to be the always strong, never fallible supermom is there. But I have learned since how much compassion and love my kids have, and am learning to let them, and others I love, in a little more. Thanks for the inspiration.

  27. Michele Chauvin says:

    It is so refreshing to be able to share my personal thoughts, hopes & fears and painful & not-so painful days with others who truly understand. Thank you for making this site available to all RA Sufferers/Fighters! Even my own family & closest friends just don’t understand Life with RA! I think I’d go crazy if I didn’t have someone or a bunch of people like at this site to understand me & my disease. My husband has been by my side for 26 years & my parents have endured my ups & downs for the past 43 years of my life (I’ve had RA for 42 years) but there are days when they get tired of hearing me complain about my pain & I don’t blame them but they just don’t understand the pain I’m in. The thing that makes me the most upset though are when complete strangers come up to me & yell at me for parking in a handicapped parking spot because they don’t think I look disabled! I calmly say to them that they don’t don’t look stupid either but apparently looks can be deceiving! I really don’t have the patience or the time to go into my 42 year RA history with them or to tell them that it takes me 2 hours just to get out of bed, get dressed, shower & eat breakfast every morning. Plus I really don’t think they’d care. Maybe one day when my RA takes a turn for the worse once again & end up in the dreaded wheelchair, then I’ll finally get some sympathy but by then I’ll really be too fed up to appreciate it anymore. Sorry I’m having a very “Bitter pill” type of day:(

  28. Kate says:

    I shared with my parents and grandparents (the people closes to me) what the pain is like and the fatigue and spammed their email addresses with links about RA that I found helpful or would like them to read. However, I feel as alone as I’ve ever felt. I don’t have friends, and I really do need the support of people closest to my heart – my family. I’ve found them to be insensitive, especially my mother. She would say “why don’t you wash the pans in the morning??? Why aren’t you doing anything???” and my grandparents say “so what now? get over it, stop thinking about it, and move on!” and if my closest people can’t support me, who the hell can? It’s the emotional part I am missing, not so much financial. They help me out financially occasionally, however they don’t seem to realize (although I’ve done my best to explain) that I need simple compassion. Just one of them to say “I’m sorry…. Let me know if I can do something for you to relieve your pain” instead of criticizing that I am making things up not having a confirmed diagnosis, and besides, I’m 26, how can I have RA? People are in denial until they get the disease themselves

  29. Jo says:

    Its ok sharing with people that have it, I find people around me that dont have it, do not realise what I am going through. I am sick of being told to stay positive, it is all in your mind. Have you taken your medication. Even the consultant said go to the gym. I cant even slice a piece of bread or get up of the floor. Tell me does it get better or is this it. Having a really bad weekneed some one with the illness to talk to.

  30. MissyB says:

    I’ve not had luck with ‘sharing’. I’ve lost some freinds, as it seems they are too uncomfortable with my illness? My family is supportive, but they don’t ask me any questions? I don’t think they realize the impact of this RA, and the toll it takes on me somethimes, physically, emotionally. Sometimes people forget that i have RA (wish i could) and i have to explain why i can’t do something. I try to be informative about this, without throwing it in anyone’s face. But for the life of me, why don’t people ask questions? It’s obvious they don’t know anything about it, so why don’t they ask? I’ve always been a talkative and open, easy to talk to person. People have always opened up to me about their problems, as i’m a good listener. But now i feel invisable, abandoned, overlooked…alone. So, who do i share with except strangers online that ‘get me’ more than those who know me in real life? so, other than online, i’ve stopped talking. I don’t know, it’s been 6 months since the onset for me. the longest six months of my life so far between pain, flare, meds adjusting. Maybe in another 6 months talking (to real life people) will be easier?

  31. Susan says:

    I have been diagnosed with RA since in my 30′s I remember the first time it attacked me. During that time the Doctors wasn’t sure what it was because it wasn’t ” in front of there eyes”. I finally went to New York Hospital and the RA Doctor did a blood tests and it was diagnosed positive RA factor.No medication was giving to me at that time. My RA started to get worse over the years especially on my hands and on my toes. Last month I had a terrible flare up on my hands and toes especially on my left side. I told my sister, you don’t know when your going to get it and how your going to get it.

    I’m on a medication for it but it did the damage what it was looking to do. I noticed a huge change in my hands, the way it feels when I’m doing something. After everything I had to struggle with in live because of my Disabilities, and me being on 9/11. This is another struggle for me to deal with. It get’s frustrating. Work seems to get harder for me to do. I’m looking on applying for Disability witch I have tried to avoid all my life. I’m 49yrs. old now. In Dec. I have to see my RA Doctor and see what happens from there. People do need to talk more about this. No one in my family doesn’t understands it until It happens to them. Which I hope it doesn’t because it’s hereditary.

    Take Care everyone. My hands are bothering me from typing.

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