Now You See It, Now You Don't: The Invisible Nature of RA
Last updated: May 2023
My husband Todd went on a mountain bike ride yesterday. It was his birthday and as a former professional bike racer this is something he loves to do. Later, at dinner with friends, he mentioned it and impressed the people at the table with how much elevation gain he got on the ride- he basically rode straight up a mountain for four miles. We sat at the dinner table for hours having fun with good friends. Later that night we got home and he went straight to bed. No one at the table knew, as we were laughing and carousing, that Todd was fighting a migraine all day long, and his pain level was about an 8/10. Todd, like me, has had decades of experience with chronic pain. And like me, his pain is rarely visible.
"a physical, mental or neurological condition that limits a person’s movements, senses, or activities that is invisible to the onlooker. Unfortunately the very fact that these symptoms are invisible, can lead to misunderstandings, false perceptions and judgments."1
Over the four years I've known Todd I've taken a mental note time and again about how differently his story with pain has been. He has had to deal with disbelief from family members, the military, former significant others, and the world at large on a regular basis. In my 47 years of living with pain, this has rarely been my experience; my JRA is invisible in other ways.
The invisible aspects of my rheumatoid arthritis come in the forms of fatigue, stomach discomfort, hearing loss, weakness due to joint changes, and itchiness. All of these things are manifestations of the widespread inflammation that I live with, and all of them are things people don't think of when they think of arthritis. Although I haven't had the experience of complete disbelief that Todd has, I know what it feels like to have your problems not believed or disregarded.
When you live with a complex chronic illness like rheumatoid arthritis, eventually you will be put in what seems like a defensive position. You will be at a family gathering, or parking in a handicapped space, or even, sad but true, at your doctors office, and you will have to confront someone who completely disregards your experience. This will happen many times over the course of your life. It is the very nature of an invisible disability, and one of the hard truths that we all live with.
But like many aspects of rheumatoid arthritis, we can figure out a way through the challenge, in order to reach a place that encounters like the ones I just described don't ruin our day. Over the years I've found a few responses to disbelief or misunderstanding that seem to work. I find that the response is completely dependent upon the person who is doing the misunderstanding, for example a stranger will get a much quicker and generic response than a loved one. Someone who takes the time to question your need for a handicapped spot can just get the response that Todd has given. “I appreciate the fact that you took your time to make sure I am actually handicapped, but there are people who need placards for reasons that aren't visible to the naked eye. I'm glad you haven't had to ever experience this hardship the way I do and thanks for your concern but my doctor seemed to think I needed this and I will accept his medical advice.”
There is a learning curve for understanding the invisible aspects of rheumatoid arthritis and I've found that the best way to help loved ones is to involve them as much as possible in things like doctor appointments and support groups. Pain is easy to forget when it isn't yours, but by hearing about how chronic pain permeates all aspects of life from a variety of sources, the knowledge begins to sink in. The hardest thing for me is to not take the comments or dismissal of others personally, and I still work on this, but I find that if I consciously tell myself that the other person just doesn't understand before I respond, my response is a lot more measured and less emotional. In turn, I don't back the other person into a corner and we don't end up in a fight; instead it becomes a teaching moment. So, if a loved one says, “I know you are tired but don't you want to go to the movie tonight?” I take a deep breathe and say, “ I really do want to but the level of fatigue I'm experiencing right now is so bad that if I don't relax I won't sleep at all tonight and I'll end up in a flare tomorrow. This is because I've had more pain recently, which wears me down, and my muscles have had an extra hard time relaxing at night because they are always on guard trying to minimize my pain. Have a great time tonight and I'll be there in spirit.” I also try to relate what I'm experiencing in some way to the experience of the other person. “Remember the time you got poison ivy and were itching like crazy? That is what my knee feels like right now, as if it has poison ivy.” If the other person continues to pressure you, you always have the option of leaving the room and doing what you need to take care of yourself.
I'm not going to tell you that this is easy, or that it works all the time. In fact, my Mom, who developed RA in her sixties, still will call me and say, “I never really understood why you said you were so tired until recently. Now I sometimes feel like I have the flu I get so exhausted.” This is after seeing me struggle for 46 years, and being a very caring and attentive mother. The bottom line is that even people who would do anything to take your pain away, won't ever fully understand it unless they experience it themselves. And I'm always glad. I don't ever want my family to get a taste of the reality of my life. I'm glad that when I picked up my niece and unconsciously winced it was a surprise to my brother when he noticed and asked if it hurt and I told him I always hurt when I pick things up, even a pen. I'm glad that my family can only empathize so much.
The trick is to be visible when you need to be, and that takes time, practice, and steady nerves. I think that handling the invisible aspects of RA well with people who can't see them is a lifelong endeavor. But I also think that it is a worthwhile endeavor.
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