I Wish You Could Live in My Body for a Day
I am lucky to have many supportive people in my life. In this online community, people have shared being left by their spouses, having friends end their friendships, and losing their jobs because of rheumatoid arthritis (RA). I know that I am fortunate not to have had those experiences. That being said, while I do have people in my life who are generally supportive, even they can’t always get what it’s like to live with such a painful disease as RA.
RA flares turn my world upside down
Most of the time, I can live life with RA in relative peace with the world. Yes, it’s a painful disease that interferes with my social life, work life, home life, and sex life. I do not pretend that it is easy to live with. Rather, after having lived with an RA diagnosis for 17 years, most days I view it as my “new normal.” I don’t like it, but I don’t spend most of my days mad at the world either.
However, when I am in a severe flare my perspective completely shifts. When each movement is painful, when the weight of a pound feels like it’s crushing me, when it’s impossible to achieve any comfort whether walking, standing, sitting, or lying down, it’s hard to just get through the day, much less to feel at peace.
Live my reality for a day
Friends and family still don't "get it"
The people most central to my life, my husband and young children, many of my relatives, and my closest friends understand that I have a disease that sometimes renders me unable to do the things that I can normally do. Yet, aside from a few loved ones who are also living with painful chronic illnesses, even those in my inner circle still don’t fully “get it.”
What it's like to be me
I wouldn’t wish this disease on anyone, but there are times when I wish that people could live my reality for a day. I’m confident that if they felt what it feels like to be me some days, they wouldn’t be put out when I can’t make it to a social gathering, or feel slighted when I don’t have the energy to give advice about an annoying situation they’re experiencing, or take it personally when I don’t laugh wholeheartedly at a joke, or be disappointed when I have to postpone a meeting or other obligation.
Understanding life with chronic pain
I feel that if people understood what severe chronic pain is like to live with, they would be amazed at the things I accomplish in spite of that pain. Rather than feel irritated that I can’t make it to a social event, they would understand how lonely and disappointing it is to be laid up at home when fun things are happening without me. Rather than feel slighted when I don’t participate as fully in conversation as I would on a good day, they would feel honored that I’m giving what little energy I have to listening to them. Rather than wonder why I’m not laughing out loud at their jokes, they would marvel that I’m able to attend to light-hearted subjects. Rather than be disappointed that I have to postpone a meeting, they would wonder how I can even think of the meeting while hurting as bad as I do.
Persevering through a flare
I know we can never truly know what another person’s reality is like, and wishing for that is pointless. However, fruitless as it may be, I still find myself wishing from time to time that certain people could live in my body for a day during a flare. If they did, they would not only realize how much determination, courage, and fortitude it takes to do all that I manage to do in spite of this awful disease, but they would be humbled at how important they are to me that I strive to do the most I can do for and with them given the constraints RA places on me.
When was your last flare?