The Challenges of Talking About Rheumatoid Arthritis

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 person’s 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 OK 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 OK 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 OK, 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 OK 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.

This blog was originally published on True Health Blog.

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