Divisions in the RA Community, Part II: Making Room for Us All
A few weeks ago, I took to email and social media to ask about a certain undercurrent in the RA online community where people felt there wasn’t room for them. The stories I was told, from people feeling left out to being outright bullied and harassed, formed the basis for my first post on divisions in the RA community. In my second post, I will look whether we in the RA community can ever get along.
On a personal level, it boggles my mind that we are vicious towards each other. It makes me angry, makes me want to defend those who are bullied. And I am so sad that the division in this community result in people being further isolated.
We all have one overarching thing in common: RA. We understand each other on a more basic level than anyone else because we understand what RA feels like. Sometimes, we find a friendship beyond that, sometimes we don’t. And sometimes, we discover that we don’t actually like each other. Maybe it’s politics, maybe it’s that they’re a dog person and you’re a cat person. And maybe it’s how we approach living with our chronic illness.
We are all at different points in our journey with RA, traveling the path to coping in different ways. We all have a right to live with this disease in a way that makes sense to us, in a way that allows us to get through every day. My way isn’t yours, yours isn’t his, and that women over there does it in a completely different way.
And that’s okay.
What is not okay is when differing opinions, coping strategies, or dislike somehow persuades us that there is only one way — ours — to do this. That level of certainty has a tendency to bring out the dictator in human beings and that never ends well. Before you know it, someone’s saying mean things about someone else online, then other people join in and voila! It’s high school all over again, with a pack of mean girls (or guys) chasing you down the hallway.
You’d think we were too old for that. That we’d know better. That somehow, our mutual experience with a chronic illness that is objectively quite nasty, might have predisposed us towards kindness. But instead, we pressure others to conform, we judge based on hardly any information. We forget that there are real people on the other side of an online persona.
And it makes people leave. In my first post, both Kim and Brenda talked about leaving groups at a time when they needed support because they felt there wasn’t room for them. Only last week, a good friend of mine made the decision to leave the RA community because she feels her voice isn’t valued. Because she’s had too close a look at the nasty underbelly of our community.
How many more people have left? How many more voices have been silenced? How much poorer are we as a community because those voices are not part of our discussion?
It’s normal to get passionate about strong beliefs and want to share what you think. It’s also normal to not quite being able to see someone else’s point of view and having a vigorous debate about it. However, the Internet — and to a point, social media — is not known for nuance. The Internet allows for an immediacy, which so often allows us to support someone in the moment when they need it. The other side of the coin is that this immediacy also makes it easier to act on a snap judgment, posting a quick, barbed response, rather than taking the time for a thoughtful comment.
We are a diverse crowd, representing a multitude of experiences and opinions. The key to a happy coexistence is to respect each other without insisting that others have to navigate life with RA the way you do. Even better, we learn from each other, the different experiences lending a deeper, more nuanced tone to the community. We are an orchestra, made up of different instruments that sound and play differently. If we were all violins, it wouldn’t be nearly as interesting. And where would the trumpets go to find other trumpets?
Somewhat tortured analogy aside, what is wonderful about the RA online community is that we are not alone. If we don’t agree with someone’s approach, we don’t have to read their posts or be friends with them. We can find someone who resonates with us in our experience, because there is guaranteed to be someone just like us. Likely many someones. We are a big, sprawling community made up of smaller groups. And all of those groups can coexist happily, if only we will it.
There is room for all of us.
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Ingesting… this draws many parallels to the “Mommy Wars.” I think HUMANS as a whole need to be more tolerant of other HUMANS. It goes along with the old adage, “If you can't say something nice, don't say anything at all.” We've got to stop judging each other when all we can see is such a minute slice of another individual's life. As we have not lived life in the EXACT shoes of another, we cannot judge them, even from our perspective wearing similar shoes.
I immediately after reading this went looking for–I didn't know if words drawn in a comic font would show up in a google search–
–found it. And if you have a hard time clicking on it to read let me know and I'll ask the author's permission to cut and paste it.
http://www.sheldoncomics.com/archive/140110.html
Thank you for this, Lene. I find myself cycling in and out of the online RA/Autoimmune Arthritis communities for many of these reasons. I have on several occasions felt attacked or marginalized for celebrating my accomplishments, and many so-called “support” groups seem to devolve into constant complaining. It's nice to be around (even virtually) other people who understand what I'm going through, but the martyrdom and competition to have the “worst” or most serious disease is tiresome and unproductive. I often wish people would channel all the energy they put into complaining into actually seeking solutions, whether than means finding a better doctor, applying for medication assistance, or writing to elected officials to improve scientific research and healthcare access.
Some of the bullying behaviors you discuss also seem to go along with troubling anti-scientific beliefs, where patients refuse care because they don't understand the mechanism and consequences of inflammation in RA and think medications like methotrexate and TNF inhibitors are “poison” and that the possible side effects outweigh any benefits (or that exercise and diet should be enough to control disease activity).
I very much appreciate that you've started this conversation.
I belong to several online RA communities. I agree with you, Lene. I believe we need to practice a lot more “live-and-let-live” and genuine care for one another. That being said, I am going to express some opinions that may or may not resonate with people.
There are folks who come to online communities with various backgrounds, expectations, and intentions. Some people judge themselves and say they simply don't fit well within a particular community. Despite extensive overtures that everyone is welcome, some folks perhaps have never felt they belong anywhere. They then blame the online group for not being more welcoming or tolerant. I'm not sure it is the online communities' responsibility or task to try and overcome every persons' belief system or mental health status. An analogy may be made with people's experiences of membership in any community – a gym, a social gathering, a club, a parent group, a course. Some group situations simply don't fit for every person.
I don't agree that some groups prefer competition for having the worst or most serious disease: that people don't want to get well. I've never met a person with RA who doesn't want to get well. The answers may not be readily apparent or available in our lifetime. In my experience, these groups are a safe haven for those who are trying to gain a modicum of a life worth living. Compassion might go a fair ways in this scenario.
I've seen pressure build up in online communities that usually does settle with some members leaving the group. Perhaps this is a natural evolution of group dynamics. I've also seen, what I consider to be, rigorous attempts by certain people to alienate themselves; everything from repeatedly bragging about a particular cure that brought them back to full health to posting incessantly and multiple times daily looking for a measure of validation that isn't possible. I also feel compassion towards those who ask for suggestions to improve their quality of life and, for whatever reasons, are unable to follow through with the helpful input.
I thought it might be valuable to point out why certain people eventually no longer feel welcome in particular communities. Another natural evolution is for those who can no longer relate to the tone and function of a group to move on. There is no need to assign blame in these situations. It is also not particularly helpful to then take a victim stance.
I'm not too keen on laying blame anywhere. Those who feel alienated feel alienated. In some situations, it may be worthwhile for people to look in the mirror to see what might be leading to repeated rejections in various venues in life. I agree that the dynamic of groups should always strive for full inclusion, acceptance, kindness, and genuine care for one another. A herd mentality can develop with a lot of finger pointing and unkind comments. At such times, it is helpful for the whole group to be aware of this change in tone.