Are You Still There? Sharing your RA with others.

I was formally diagnosed with Rheumatoid Arthritis eight years ago. Before that day, I had curated a collection of ailments without a name or proper diagnosis. I now know that the time before a formal diagnosis can be extraordinarily long and is adequately referred to as being underdiagnosed.

For the past eight years, I have been very vocal about my RA in an effort not only to educate others, but also to lessen the emotional load of living with a chronic disease for myself and my spouse. Carrying on with an unpredictable disease that does whatever it wants, regardless of the mountain of medications I take, is frustrating, demanding, and exhausting on the best of days. So, when someone asks how I am doing and then gives me a space safe enough to actually tell them, it feels like the top of the pressure cooker has been slowly released. The importance of that cannot be overstated.

To share or not to share?

From what I've experienced as a chronic illness advocate and support group leader, either you are a person who feels better by sharing, or you are not. Either you are comfortable talking about your illness, or you don't want to talk about it at all. Neither option is better or worse. Both are perfectly appropriate ways of navigating your own journey. I, however, am a sharer. I need to share. Over the years, I have learned that when I try to contain negative, sad, or disappointed feelings inside, they multiply and grow much larger, like resourceful weeds. The ever-growing emotions wind around my heart and strangle my deductive reasoning until it feels like all clarity has been suffocated by the dangerous tendrils of what I'm not talking about. So, as you can imagine, it can feel very conflicting after eight years of sharing about the exact same invisible illness to know whether or not I should still continue to share.

RA is not invisible to those who have it

But my RA is never, ever invisible to me, only to others. It is the pain in my chest and ribs that I feel each time I breathe. It is my inability to braid my hair comfortably for work. It is in the eight mouth sores, making it too painful to nourish myself today. You can’t see the things that are happening behind my scenes, but I feel them so deeply, and they feel never-ending. Every single day with RA is a new day with a slightly different set of challenges. When I share something with a close friend or my beautiful sister, I want to always preface it by saying: “Yes, I know it's only been three weeks since the last bit of depressing medical news I had to share, but wait, there’s more.” I ask myself frequently: When is it too much? When is this depressing update too close to the last depressing update? My body is always experiencing some other crazy thing because RA doesn’t heal and time doesn't pass in that way for me. That is exactly what chronic has meant.

We mostly move through our lives believing everything is okay until, unexpectedly, we are shown that it isn't. Your friend is diagnosed with tonsillitis. Your favorite aunt breaks her femur. Your best friend at work contracts COVID. These events, and many like them, are usually transient. Phrases like "Get Well" and "You've Got This" frequently apply. We understand how to support the people we care about through challenging times. Typically, challenges come in wildly varying lengths, but they have a beginning and an end. Even with the uncertainty of time, there is still a finish line. Their body heals, their life slowly begins to move forward again, and their circumstances change for the better. Every day for the past eight years, it has become more and more apparent that my Rheumatoid Arthritis does not get to have a resolution. There is no clear finish line to move toward, and that can make me feel isolated and alone.

Does sharing mean needy?

My need to share can collide with my fear of being seen as redundant, needy, or someone you would rather avoid. Because there is always a new iteration of my RA to move through, it is always on my mind. The only time I'm truly free of patient worry is when I'm teaching yoga, because luckily, I cannot teach yoga and worry simultaneously. So here we are at an impasse of sorts. I need to talk about it. I am also afraid that, after eight years of talking about something that will not ever go away, you have become wary of our conversations - wary of my company. What if I share too much? What if my friends and family members tire of my constant state of unwellness? I know I do.

So, I sit here feeling lonely. I feel alone. I so appreciate when you ask how I'm doing, and I want to tell you. But I still want you to want to go to lunch with me or meet me for coffee. Because I’m still in here.
Is that too much to hope for? Sometimes it feels like it just may be. What we, the chronically ill community, would like you to know is that we need your support. We all do, and it can make us feel small to have to ask for it. But we are asking;

Are you still there?

By: Sherry Duquet