I recently shared on Facebook an article about the death of Emma Suddaby, a reporter from the United Kingdom who died from complications of RA at the end of May, at the age of 41.
I was taken aback by a comment that was left, which read:
“I’ve had RA since I was 14 and have never heard of anyone dying because of it. I get the infection risk, but this is an incredibly rare situation. I’m sorry to hear she struggled so much and was in such discomfort.”
I have since deleted the comment so that the person would not get harassed or attacked, but I feel that it is important to talk about comments like this.
This is the type of comment that I would expect from someone who doesn’t have RA, and cannot conceptualize the significance of this disease. But coming from someone who has RA, themselves, makes it especially offensive or shortsighted.
The reality is, the RA community is made up of people with varying degrees of illness and disability. But that’s what makes it a community. We come together with the commonality of having RA, but our experiences in terms of severity may vary.
Competition about who has RA the worst, or who has it best, is counterproductive. Emphasizing our differences makes us less of a cohesive community than coming together based on our similarities.
I personally struggle with finding connection with the commenter.
I am happy for her that her life has not been significantly impacted by RA, but the inability to realize that such an experience is not necessarily typical – and to view the other extreme as less typical – seems to me to be a fundamental misunderstanding of this disease.
I know that when I am doing particularly well, I sometimes feel that I don’t belong in the RA community. However, no one has ever made me feel this way. It is my own insecurities that lead me to this feeling.
But it shouldn’t really matter. Whether you have RA that minimally impacts your life, or your whole life revolves around RA, you are and should be considered a part of this community.
I feel a bit bad for the commenter because I feel that she is not really a part of this community. And maybe she has never felt that she needs a community.
But I think the key is that competition within this community is not helpful. And to suggest that someone who dies as a result of RA must be different than the majority of people with RA really suggests a fundamental misunderstanding.
I feel that so much of what happens in this community is focused around getting people without RA to understand the seriousness and debility that can be a result of this disease.
But it’s clear that we need more education within the community, as well.
Another member of the RA community passed away on May 29th, so this isn’t as rare of an occurrence as the Facebook commenter would like to believe. And maybe she’s in denial that this disease has the potential to kill even her.
What really matters is that when someone in the RA community dies, it should be a rallying call for us to further awareness. It should be a reminder of the realities of what we all face with this disease. It should not be a moment when we look at these deaths as being atypical and something that is overblown and we don’t need to worry about.
And it does nothing to help awareness when members of our own community deny the realities of this disease. Fractures in this community make us weaker rather than stronger.