The Experience of Rheumatoid Arthritis: How Much to Say
Living with rheumatoid arthritis is hard; talking about living with rheumatoid arthritis, especially to loved ones and friends, is harder. Like the disease itself, there is nothing simple about putting the experience into words. How does one express the level of uncertainty that is part of our daily experience? How do you describe your level of pain accurately without falling into what appears to be a pity party?
These questions have plagued my thoughts over the years, especially since in the past many of my feeble attempts at explaining the complex situation that my life is, have resulted in embarrassment on my end and confusion on the part of the person I was seeking to help understand.
Part of the problem for me is that I don’t have a frame of reference for the other persons experience. I don’t remember not being in constant pain, the very idea is so foreign to me that I tend to assume a level of understanding that just isn’t there. I have had a few acute injuries that give me a sense of what bad pain is for people who don’t live with chronic pain and what they tell me is that the feeling of a broken bone is equivalent to a bad pain day for me.
The fact is that my life is by definition less carefree, less physically enjoyable, and a lot more tiring than most other people who inhabit this planet. The fact is, if you live with rheumatoid arthritis, your life is too.
These are the facts, but these facts, especially in the age of the shiny, happy social media lives we tend to compare ourselves to, are not easy to share. This is especially true if you are seeking to be less anxious or avoid pity. How many times have you opened up to someone seeking comfort only to walk away feeling much worse? How many times have you opened up to someone about your pain only to end up minimizing your experience in order to comfort them?
This used to happen to me a lot, which is why when I was young I tended to answer, “fine,” whenever anyone asked how I was doing. It worked well until I was in college and started going to a rheumatologist who told me, “Fine is not an answer Kathryn, you are going to have to be more specific.” That started the process for me of actually digging deeper into how I really felt, and what I discovered is that I actually didn’t feel fine. I felt scared, alone, and anxious about my life. But when I told other people this, I found that they either joined me in my fear and anxiety, or attempted to placate me by saying, ” It will be fine, don’t worry about it.” This was a good way to shut me back up.
When you live with RA, you learn quickly that life can be very challenging. Eventually, you come to understand that this is okay even though one of the challenges of RA, and any complex chronic illness, is the inexpressibility of it to those who don’t share your experience.
It took years, but what I finally came to understand is this: RA is a lonely experience and it is okay to keep most of it to yourself with most of the people in your life, including loved ones. But it is vitally important that you have at least one person who you can share your full experience with.
For most of the people in my life I keep a “need to know” rule. I tell them about my pain if they will be affected by it in some way. Otherwise, I keep it to myself unless they ask me a direct question about it. I am honest when asked a direct question but I always choose my words carefully unless I am with someone who is safe. A safe person for me is someone who listens, and expresses support but doesn’t try to direct me or tell me how I’m feeling. I can tell if a person is safe by how I feel after I talk to them. If I feel worse, I need to scale back my level of openness about my suffering. If I feel better, I know the person is safe to open up to.
The few people I have in my life that I feel safe being completely honest with are my life preservers when I’m really struggling and my cheerleaders when I’m doing well. Without them my life would be much more lonely and hard. I know that, whatever comes out of my mouth, they can handle it.
At this point in my life I’m consciously surrounding myself with people who don’t back away from the truth of my life. My relationships with the people who have a harder time “handling it,” whether it’s because they are afraid for me or just don’t want to be bogged down by my life, are so much better because I don’t try to force something that isn’t there. I don’t need to because I have the comfort of knowing if I need true support, I have it, just not from them and that is perfectly okay, and I’m finding that my life feels much calmer and less challenging.
So, my advice for people who are struggling with their pain but not receiving the support they need, is to start paying attention to how you feel when you open up to the people in your life. Start cultivating the relationships that feel safe and supportive. Understand that it’s okay to keep your pain to yourself much of the time, and know that you will find the people who will walk your journey with you and not turn away.
Here is another article on the topic that I wrote for https://rheumatoidarthritis.net/
And you can always delve deeper into this topic in my books, A Resilient Life, learning to thrive, not just survive, with rheumatoid arthritis, and True Health, the Inside Job, found on amazon.com: https://www.amazon.com/True-Health-Inside-Job-Elton/dp/099068900X/ref=sr_1_1?ie=UTF8&qid=1500829562&sr=8-1&keywords=true+health+the+inside+job and my website http://katelton.com
10 thoughts on “The Experience of Rheumatoid Arthritis: How Much to Say”
I love these heartfelt and sincere comments. That’s what pain does, it pares things down to what really matters, and we’re perhaps able to get some insights and clarity in relationships that others might not have. I’m finding that being able to discern who will be rock solid in support, and who simply can’t is crucial in relationships. No one can have another’s experience, but truly empathic people can sense what will help those they love during a difficult time. For those of us who have always approached pain as something to barrel through, grinding teeth, and crying in private, learning to be wide open to those supportive loved ones is a difficult task, but ultimately better for both parties….a kind and open heart always prevails. What a gift this site is….to not feel the depth of loneliness that permeates dealing with this disease so deeply when you hear from others.
Throwing healing thoughts out into the universe that all those who suffer will get moments of relief today.
HI Jeanne! Thank you ever so much for writing to me. Your words were so poignant and true for all of us living in pain. Healing thoughts back at you! ?? Have a lovely day!
Thank you Kat..picked up and re-read a bit more in your book, which grounds me and diverts from pain. Another trip, about 1 3/4 hours to Medford, Oregon for ANOTHER doc. appnt…exhausting, but necessarily and thank heavens I have a dear friend who can drive me. At least I get to come to a beautiful, quiet little mt. town at the end of the day.
“good hand” is starting to join the other in it’s really fast “Ulnar Drift” discouraging and painful, but again, calming, meditating,reading Pema Chodron and your book and petting a couple of cats helps.
Hoping your day is a good one and also hoping you realize the value of your life, your writing, and your enduring spirit that you’ve chosen to share with others.
Thank you but I would appreciate a little bit more of a direct answer. People ask me how are you, people who really don’t care and some who do but really don’t want to hear the truth, and I say fine. I don’t want to say fine but I don’t want to say what is really going on. What is a better thing to say?
Hi Tony, Thanks for your thoughtful comment. This is a tough topic, which is why I wrote about it. I really think it depends entirely on what you said- is the person asking how you are because they really want to know or is it just a polite way to greet you. If it’s a casual, ” Hi, how are you?” I’d just say fine, but if it is someone who really cares, then I’d tell them, not everything but enough to give them a general idea of what’s going on. With 98% of people I try to keep it positive, even if I’m struggling, so I may say, ” I’m doing fine but I’m having a few tough days. My knees have swollen up so my pain is worse.” It can be hard to open up because it make you a bit more vulnerable, but especially with loved ones. it’s important to let them in, maybe not all at once but over time. I understand what you are saying about people who care but don’t want to hear the truth, but I wonder, do they really not want to know? Or do they just not know how to help or how best to respond? I’d guess that there are at least a couple of people that you know who truly care and want to know how you really are. And it only takes a couple of support people to make a huge difference in your life. So, one idea would be to keep the “fine” answer for most everyone and practice on a few people who you are closest to, giving them a more complete answer. It’s a bit of trial and error, and checking in with yourself to see how you feel afterwards, but RA is too tough to handle alone for a lifetime. Good luck and write again to tell me how you are doing if you want 🙂
I’ve decided “need to know” is the best filter whether to share my RA diagnosis. My experience has been that most people don’t know what to do with that information. So if it is necessary a person needs to know I have RA, I will tell them. If the information isn’t necessary, I don’t tell them. I’ve enjoyed the RAblog week because I’ve been able to “hang” with those that speak my language. Thanks for your thoughts! XXOO
I couldn’t agree more with the sentiment of this post and the balancing act required to engage people to gain support in your challenges while avoiding well intentioned but ultimately misguided “coffee mug” comments about what you should or shouldn’t do. I also agree with the notion that ultimately we all travel this road alone. Other people can help carry the burden from time to time but it is up to us to decide to take the next step, then the next. Moving forward or giving up are both choices we make for ourselves.
I appreciate when others show support or do their best to lift my mood, but the most meaningful comment I think I ever got was by a doctor who, during an exam, said “this must really suck for you.” The comment wasn’t false sentiment, it wasn’t meant to influence me, or try to make me feel better by ignoring the reality. It just acknowledged the simple fact that living with a chronic disease is generally suckier then not and it connected with what I feel. I simply and honestly responded ‘Yeah, it does kinda suck.’ Simple acknowledgment goes a long way.
Kat Elton is an example of someone who has faced an Everest sized mountain of life challenges, maybe a couple of Everests. But she continually finds a way to gather herself and bounce back.
I applaud all those who face chronic disease, pain or both and make the choice to keep pushing forward.
Thanks for writing Ned. I love the “most meaningful comment” you got. Those are exactly the kind of comments that help me the most as well. I don’t need lengthy dissertations about my situation or a pep talk, “this must really suck for you,” says it all. All it takes is validation of the situation and then we can move on. What that comment says is that the other person sees you and, as you say, acknowledges your situation. None of us expect anyone else to take it all away, but the very act of acknowledgement always lifts the load.
See you around……
I thank you Kat for putting into words what I feel. I am mostly alone even though I’m married because quite honestly people CAN NOT relate. They think we have ARTHRITIS you know like so many other people have. They don’t UNDERSTAND that RA is so so different and deeper than Arthritis.
You are so so right about social media..I will admit that seeing only the “perfect” stuff that people post is gut wrenching sometimes.
I just want to THANK YOU SO DARN MUCH for writing your feelings so I can understand I’m NOT the only one. RA can be lonely….but outwardly everyone thinks I’m doing fine because that is what 99% of the people around me wish to see.
I guess we all have our “stuff” but chronic pain can be rough. I do have a lot of good days and for that I do feel blessed.
Hugs to you,
Thanks for writing, and thanks for the hugs- back at you! I agree, chronic pain is a rough one that most people equate to their own experience of pain, which is a very different animal, and much less all consuming. Even my Mom, who as you would imagine, would do anything to take this disease away, and has seen me through 46 years of this, was shocked and horrified when, in her sixties she developed RA and realized just how fatiguing active disease is. She called me one day and said, ” I had no idea that you felt like you had the flu when you were having flare-ups.” This was after I had tried for years to explain it to her in different ways. We all have the luxury of putting other peoples problems out of our minds whenever we want to, but unfortunately we can’t do that for our own experience. I do think that the more people talk about it the more others will begin to “get it,” at least a little. But it is hard, especially with loved ones, when we feel alone in our experience. Thanks again for writing and joining the conversation! 🙂