Why I Won’t Be Walking For RA
May is both arthritis and lupus awareness month.
But while I’ll be trying to spread awareness behind the scenes, I won’t be participating in walks for either disease.
There are a variety of reasons.
One is that because of sun sensitivity due to lupus and because of sensitivity to the sun as a side effect of RA meds, it doesn’t make sense for me – and I think many of us – to take part in an outdoor event.
Another reason is that I think these walks are biased toward the healthiest among us, and I don’t think that they provide an accurate representation of this population.
And I don’t feel that these walks really represent me. I feel much more connected to fellow patients I’ve met on the Internet than to anyone I’ve ever met at the walks. I don’t know exactly why this is, but that’s the way I feel about it.
I should feel comforted, surrounded by all of these comrades in arms. But I have never felt so alone. I don’t have a connection to this amorphous group, seemingly assembled with the same goals in the mind, the same hopes and dreams for a future without RA.
But one has to wonder whether a cure opens a Pandora’s Box, creating a rift, an extreme loss of identity. Now you neither fit in with the world of the sick nor the world of the healthy.
A cure, to be sure, is important. And if these walks truly get us closer to that, then that’s great.
But I think for many of us, the focus is in how we live with this disease, rather than focusing on a world that exists without this disease.
Some groups are doing virtual walks, which give people a period of time to walk and log miles. You can often do as little as one mile over a period of a month, thus allowing people to do it at their own pace and ability level, without making them feel like they aren’t doing enough because they don’t want to or are unable to attend a one-time-a-year event.
Obviously, I am not 100% sure how something like what I just mentioned would work, but I do think that regardless of what it ends up being, there should be more options for in-person advocacy that don’t involve walking and being outside for a population that both of those things might be difficult for.
I firmly believe that advocacy at the macro level only works when the constituency is being targeted in a way that makes sense.
And I don’t think that the awareness walks do really make sense in the case of RA.
Have you gotten the COVID-19 vaccine yet?