Reacting To Other People’s Reactions

A while back, exactly when it was I do not know, I made a conscientious effort to change the way in which I reacted to other people’s (sometimes misinformed) reactions to my rheumatoid arthritis. Prior to this point, I was always ready to–and often did–pounce on any individual who didn’t demonstrate a complete and thorough understanding of my illness.

After each one of these types of episodes, I often felt completely drained. Not only was I getting angry, probably more angry than was good for me, but I was also spending so much of my energy, which was in such short supply, on something that ultimately (looking back) was not of the utmost importance.

Right around this time, I realized two things. First, there are hundreds, if not thousands, of diseases, and very few of us are probably familiar with the most common dozen (or even half-dozen.) Sure, I’d love it everyone knew all about the ins and outs of RA…but if anyone asked me about something such as Guillain–Barré Syndrome, I wouldn’t have a clue. (This syndrome is in the family of autoimmune diseases, and out of full disclosure I must admit that I do have a slight clue of what it is about, but only because I read the Wikipedia page after hearing that one of my high school classmates lives with this disease…but this just confirms my point: even with a high level understanding, I would never pretend to understand the specifics of this disease.)

The second things that I realized was that a large majority of the comments that I received, as misinformed and annoying as the could possibly be (excluding, of course, the “it’s all in your head,” which I was actually told on numerous occasions!) were actually well-intentioned. Off the mark, yes, but nevertheless still spoken with good intentions. Take, for example, one of the prize winners: “But you look so good,” or “but you don’t look sick!” Previously, words such as these were all that I needed to…well…we’ve all been there before, I need not go into detail.

How could I possibly not be offended by such words anymore? Let me explain. A little under two years ago, for a period of almost six months, I looked like the walking dead. Weight was coming off my body way too fast, and my hair was falling out just as quickly. Every time I looked in the mirror, all I saw were the sharp edges and shadows that filled my face, below my eyes and around my cheeks. Co-workers and friends would discreetly inquire if everything was okay.

Fast-forward to the present, where my body has once again “filled out” (an understatement, if there ever was one!) and where on most days, at least over the past few months, I do indeed look really good. Sure, the pain inside never really goes away, and morning stiffness is something that I could do without, but when I look in the mirror now, my own first reaction is that I look “healthy.” So after having gone through that half-year period, where the last thing that anyone would ever tell me was that I didn’t look sick or that I looked good, nowadays, when I hear these same words, I take them as a compliment. I no longer interpret them as a negation of what is actually going on in my body.

When I realized these two items, and decided to change the way that I reacted to other people’s reactions, there was one last thing that I had to learn to accept. This was that no matter how much I myself thought I knew about rheumatoid arthritis, living with it day in and day out, there was still so much that I didn’t know about this disease. And no, I’m not referring to the scientific perspective, of what happens down at the molecular level. What I’m talking about are all of the emotions, feelings, and thoughts that accompany the pain and disability that I encounter on a daily basis…or to put it another way, there was still a lot that I didn’t know about my own reaction to living with this chronic and debilitating illness. Never mind other people’s reactions…

So I made myself a promise. Whenever I was with someone else and the topic of rheumatoid arthritis would come up, I would first determine what type of person I was speaking with. Group A were individuals who had a slight to thorough understanding of rheumatoid arthritis, or other similar autoimmune diseases. Also included in this group were people who weren’t too familiar with too many details, but who were obviously open to learning. Group B were the individuals who, for whatever reason, had no understanding of RA and other autoimmune diseases, and who had no desire to learn more.

With people in the former group, the conversation would roll along unabated. I would learn from them, and they would learn from me. On either side of the discussion, there might be misunderstandings or inaccurate statements, and while these were talked about and debated, they certainly were not jumped upon, or received with offense. The goal, after all, was to increase awareness.

And for people in the latter group, I would listen to what they had to say, thank them, and then change the topic. My thanks were indeed sincere. You see, every time I felt like getting upset at another person’s reaction or lack of understanding, I would use this as an opportunity to connect with myself, and learn more about my own reaction to living with this disease. This ultimately served me so well, that I finally had to wonder to what extent my original angry reactions were just a way to avoid confronting certain issues myself, a way to avoid looking head-on at all of the confusion that often floats around inside of my own head.

So yes, I continue to receive responses and reactions which, at the surface, give me every reason I need to get angry. Instead of getting mad, though, I actually have gotten to a point where I welcome such statements, because as I’ve explained, each and every one of them is a reminder, and an opportunity, to learn more about my own emotions, feelings, and thoughts that arise from living with rheumatoid arthritis.

Raising awareness in others is certainly important, but it will never be as important as raising awareness within myself.

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

29 Comments
29 comments
  1. Joseph says:

    Mate, your like some Jedi Master with your wise words. :D I’m going to start taking that approach to discussing RA with others.

  2. Frantasm says:

    Great post. And I agree getting upset about other folks lack of understanding (willful or not) won’t make us any better. In fact that sort of stress just makes a flare worse (I’ve learned this the hard way). I concur that a kind “thank you” helps. Sometimes when I get a “helpful” suggestion I’ll say “I’ll take that into consideration.” I’ve been reading a book entitled “How to be Sick” by Toni Bernhard which has some other lovely ideas on this & other topics that RA folks may be able to relate to. Thanks again RA Guy for your insight & have a happy year!!!

  3. RA Guy says:

    @Frantasm, I agree…I just reached a point one day where I realized that continuing to get upset about other people’s lack of understanding wasn’t helping me any…so I figured that I might as well replace it with something that did help me.

    I’m familiar with Toni’s book “How To Be Sick,” I haven’t read it yet but hope to soon!

  4. Jamie says:

    This is a topic I have seen a lot since joining RA pages about a month ago, but the anger part of it I have had trouble understanding. In the 13 years of having RA I have never once felt the need to make someone else understand my illness. It’s important for friends and family to know your limitations, but to understand will never happen. I usually try to hide any pain I may be in from family cause I know they just worry. And I am so not a complainer. If someone says to me “oh your to young for that”, I simply say without anger “well, unfortunately not. I have rheumatoid which is autoimmune, very different from wear & tear arthritis, and is most common in women of childbearing years, but can happen in men, children, and older women.” And that’s usually the end of it. If someone says to me “oh my grandmother had that” I simply say without anger “oh that’s to bad. Well, I know how she feels or what she went thru.” I really never cared if it was RA or OA or whatever. Why get myself all worked up over it. Just not something that ever bothered me. If someone says to me “oh yeah, my pinky hurts or I have some knee pain”, I simply reply without anger “oh yeah, now imagine that pain 24/7 for the rest of your life.” And if someone ever used the word cure to me, I would be so happy for them (whether it was cured or not). I would definitley ask how they did it. I would check into it and maybe try it myself. I sure am not going to wait around for big pharma to find it, cause that will never happen.

  5. Thrive with RA™ says:

    Hi RA Guy,

    I really appreciated this post, particularly about your improvement in health (Soooo happy for you) and the vastness of the world of different diseases. Even we as RA patients, as immersed in disease-dom as we are, may not know much about others’ illnesses or specific trials — they are far too many, as you have well pointed out.

    When people are healthy, not many pay attention to specific disease causes, symptoms and their remedies, unless it touches their life personally in some way. I believe it’s the nature of being human to become connected to things that are most relevant. Not paying attention doesn’t make them heartless or uncaring; it doesn’t even make them ignorant – just unaware, perhaps blissfully so, I have discovered. Because of this, I think some comments about RA are made by people who are caring, but unaware. As much as I appreciate knowing more about other diseases and the afflictions of others now because of my own health trials, part of me misses being less aware; prior to RA I didn’t know to the extent as I do now about all the suffering in the world. Empathy can be sometimes quite painful in more ways than one.

    As RA patients, we are more in-tune with others’ afflictions out of empathy, but I for one have much to learn. There are so many “obscure” diseases out there, but if they afflict and trouble just one person, its symptoms are worth knowing. I won’t ever be a walking medical encyclopedia, but I want to better understand what others are going through. I believe most people feel this way in relation to approaching us as RA patients with their comments — accurate or otherwise. I have found most people are genuinely caring and want to help. In my own experience, my compassion for others’ trials has compounded ten-fold due to having RA. I am much more aware of even subtle disability in others and am much more patient. Before RA, I didn’t know the difference between OA and RA. Before RA, I was still a compassionate, caring person, but I was less aware. Experiencing a serious disease educates a person in a hurry.

    The media plays an integral role in mainstream society’s understanding about RA. As truth is propagated, awareness of RA will expand. I’ve only been in the RA online community for nine months, but I’ve seen an increase in awareness spread considerably in just this short span of time. In the meantime, I will consider anyone’s inquiry regarding my health as a gift. If they don’t inquire about my health, I will also consider that a gift, as sometimes I just want to just be me, not attached to RA in a conversation. :)

    Wishing you well for a Happy 2012!

  6. abcsofra says:

    Ok, don’t think me weird but I got a chuckle from this post. Let me explain. For some unknown reason I am getting this type of “problem” from everyday sort of interactions with family and even strangers. It has been such an eye opener and nothing to do with ra. I am wondering what the universe is trying to tell me this past year. Your post hit home for me but not with ra but just in general. I am wondering if people have lost their minds or something lately. It is like people want to push others buttons and for no apparent reason. I will keep this line in my head of yours from now on…every time I felt like getting upset at another person’s reaction or lack of understanding, I would use this as an opportunity to connect with myself, and learn more about my own reaction to living. Bless your heart for sharing :-)

  7. Linny says:

    Thanks RA guy. I think a lot of patients (of all diseases) need to realize this. I agree with some of the posters here that I’ve never felt the need to get angry at the uninformed or the misinformed. Afterall, I can’t claim to know the details of schizophrenia, of Autism, of blood cancer, or even the day to day trials of type 1 diabetes–and yet I have people in my life with these afflictions. Is it wrong that we all don’t sit around in our free time reading about every possible problem on earth? It’s selfish to think that society owes us a working knowledge of our medical situation. Our doctors owe us gold standard care. Our close family and friends owe us understanding and support. Just because we have RA does not mean we get the right to carry a violin on our shoulder and wail away when someone says their uncle has arthritis in his shoulder, or looks at us funny when we park in a handicapped spot. People by nature are unable to truly understand what doesn’t directly affect them. We ALL do it. Demand knowledge from your doctor. Demand support from your loved ones. If anyone else cares to listen and learn, it’s icing on the cake, people!

  8. Elisabeth says:

    This is always how I felt about these kind of reactions. I am happy that even with this disease I still look good! And I see no point in playing the “well my pain is worse than yours” card. Pain is pain, we all experience it differently. My OA has been causing me worse pain than RA lately so I try not to compare diseases. The only time I feel the need to educate others somewhat is when I need them to understand why I might need an accomodation. The people who matter understand eventually just because they see me often. Luckily, other than unsolicited dietary advice, most people don’t provoke my anger. I am however, much more conscious of the hidden limitations others might have, and try not to judge when someone seems to be getting special treatment. Thanks for a thoughtful post as always.

  9. RA Guy says:

    @Elisabeth, I too am not comfortable with comparisons which sometimes seem to imply that RA is worse than OA, as I’ve seen first-hand the ravaging effect that OA has had and continues to have on my mother’s life and on my mother’s body.

  10. Rene says:

    I really don’t want to educate others on RA. Had it since 1950. Then contracted Lyme disease in 89. What a combo!!! But I’m ready to help myself deal with waining productivity that comes with an aging RA LYMEE. I feel like giving up and accepting uselessness. Very bad attitude.

    So hail to your efforts to help your aching friends.

  11. Karen says:

    Great insight! Thanks for sharing. Ultimately it is learning about our own reactions that teach us about ourself. Practice is what I will strive for!

  12. Linda says:

    Good points. I am very glad you have a new attitude. Being upset is never good. I know most people I know don’t know the full story on RA, that’s OK. Personally I don’t know exactly what people are going through when they have dementia, cancer or fatal heart disease. Yet some dear friends are going through these things.

  13. Shauna Tilton Carder says:

    Hi RA Guy,

    My anger for RA is what it has taken from me in regard to my career because it WAS physically demanding. With that being said, the positive side is a career change and going to college (which I never thought possible). I am a newbie to this lovely disease RA (DX 2 years) and I have to remind myself not to focus on what has been taken from me but what I have gained. I will not lie….I do get frustrated trying to explain RA. I sooo enjoyed and fully understood your post and I can see how using your techniques can lower my frustration. I loved it!! :)

  14. Bridget Seritt says:

    Life doesn’t always create circumstances of compassion and understanding. I’m so glad you posted this. Often, we expect people to understand our pain and take their “advice” as a personal insult. My husband said it best when he told me that as humans, we can only understand what we’ve experienced. Most people will never experience the level of pain we do, so when we talk about pain, they might associate it with a stubbed toe. So when someone tells me I look good, or don’t look sick; I take that as a compliment. That is a sign that I am not letting the RA/Lupus/Sjogrens win and dictate my life. Kudos RA Guy.

  15. Lemon-Aid says:

    Well said RA Guy. I can relate to how annoying people who either don’t know, don’t care or just plain don’t get it can be. I try to spend very little time with these people and or ignore them ;-)

    Wishing you a wonderful, happy and healthy 2012.

  16. Turtle Lady says:

    Well written and very helpful. Thanks so much for sharing and for a wonderful new perspective and challenge.

  17. Linda P. says:

    I, too, read Toni’s HOW TO BE SICK, and highly recommend it. I was just coming into the realization that I truly did have RA, that it wasn’t going to go away, and that it was impacting my life in ways I couldn’t control. I had realized that I was going to have to drop out of the orchestra, that I couldn’t take on the next writing assignment, and that I truly wasn’t likely to return to jogging 3-4 miles a day, at least any time soon. My beloved mountain bike was probably parked for good. I was grieving. I honestly credit Toni’s book and the work I did afterwards, too, with the fact that I’m a happier person now, with RA, than I was about fourteen months ago. I realize that I’ll go through other losses and griefs with this illness, and this holiday season was one when some losses did show up. We realized that we had been dropped from our social group, not invited to the usual parties, after a year of my spotty attendance at gatherings of our group. There had been some times when I just couldn’t make a planned event, sending my husband along anyway. But, because of Toni’s book, instead of sinking into recriminations and blame, I’m searching for recipes that I can make ahead of time and that require little effort on the day of an event, and am planning to invite friends over for lunch some day soon so that we can maintain at least some social bonds. I figure we can do that couple by couple, and I should be able to reliably be up during the middle of the day if I rest for an hour midmorning.

  18. Carla says:

    There are few attributes more noble than being able to treat others with grace. It sounds as though you’ve made some major breakthroughs in this endeavor.

    Happy New Year. May 2012 treat us gently.

  19. Lana says:

    I know those feelings of anger towards the misinformed view of others – I, too, have learned to let it go. I wish that I didn’t look sick but even if I don’t look sick, I feel sick. You are right in that we don’t know everything about RA, the rest of the world is no exception. I never heard of RA until it came into my life. I have come across Group A’s and B’s in my life. I often tell myself that the people who care want to know and the people who don’t care, well, I don’t really need them in my life. So I accept and move on. However, there are times where I get caught up in those feelings and I have to remind myself to move on.

  20. Deborah Leger says:

    Sometimes I read your posts and think, “hey, how did this guy get into my head again??” I have had those experiences, and I know at times I must have had the “I’m sorry, are you really that stupid” expression on my face when someone says something completely out to lunch or so insensitive that if it wouldn’t hurt me more I would be tempted to smack them in the head. Just because I’m not pulling myself behind a walker, or looking so gnarled up my issues are obvious doesn’t mean that I am not in agony or having a bad day. It would be nice if we as a society could get some sort of grasp on what someone else goes through on a daily basis. I think what we all need some days is a dose of being in someone elses shoes just to have a better understanding of things. BTW, my first doc did tell me that my symptoms were all in my head. I think I perfected the “Are you Stupid” look on her right away.

  21. Joie says:

    In my early years with RA as a young adult, I had no outward physical signs that I had this chronic disease. This, along with the misconception that “rheumatoid arthritis” was simply “arthritis”, did make it difficult for me at work and with my healthy friends.

    When venting my frustration with this lack of understanding, I was told it was my job to “educate” them. At the time, this suggestion angered me – I thought I have to deal with the daily challenges of this disease, and the nagging worry of its uncertain progression AND I have to educate people? But now I realize if not me, who has since lived with RA for 35 years, then who?

    As RA Guy pointed out, you have to size up the person you’re speaking with – and tailor your RA info to them. When told I was so young when diagnosed w/RA – I’d reply that children as young as one and two have RA. If the person says they have arthritis or achy joints, I’d point out that there are 100 types of arthritis – that RA is an autoimmune disease, where a haywire immune system attacks not only joints but also can affect the heart, lungs and eyes. If their eyes haven’t glazed over by this point, I’ll mention I’ve had my knees and hips replaced – and for the zinger — that RA drugs can cost over $1,500 a month!

    So, I now do my part to educate folks about RA. And for me, by increasing awareness of RA, I’ve not only found something positive and productive out of these 35 years with RA – but a more self-serving reason – to gain support of medical research for better and safer treatments and hopefully, one day, a cure.

  22. Marcia says:

    As always, RA Guy, thanks so much for your thoughtful assessment on this topic. I do a little education with people when I feel it’s especially called for, sometimes I just ignore their ignorance and most of all, I try to remember earlier times in my life when I was healthy and had a lack of patience or understanding for others’ illnesses. It helps to put things in perspective. Being too angry or feeling victimized doesn’t serve us in any constructive way. Autoimmune suffers are a brave bunch of folks!

  23. Tina Tarbox says:

    These types of comments really gnawed away at my self-esteem when I was a young child with arthritis. I hadn’t yet developed the confidence that I have today. I handle them now in the same ways that you do. I find it helps me to maintain more peace and balance. Great article.

  24. Carolan Ivey says:

    Excellent post. :) It took me a long time to realize that anger never hurts the person who makes me angry – it only hurts me. The same applies to the disease itself. It’s a waste of time and energy to continue to hold on to anger over a situation I never had control over. It’s still tough to let go, sometimes, but it’s the healthiest thing.

  25. Beth says:

    wonderful article,,,and i would add that as anyone suffering from any disease, we all look for not the comments but compassion. but as you say with looking good today, say thanks! and move on. because yes, there are two groups, those who can take knowing and those who can’t.

    one thing i would like to ask, how do you tailor this thought process to those even closer to you, say a spouse or parent? that’s when it is most difficult. Especially, when it is the second group. doesn’t want to know. any thoughts about dealing with that would be welcome. Thanks RA Guy!

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