Thursday, February 26, 2015

Divisions in the RA Community, Part II: Making Room for Us All

“People, I just want to say, you know, can we all get along? Can we get along?”
-          Rodney King

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.

Tuesday, February 17, 2015

Division in the RA Community, Part I: Pressure to be Other

Also posted on CreakyJoints

“I had to stop going online because there was no comfort for me there.” (Kim Bruno, @kaurorab)

I have been made to feel that you will only be accepted in these groups and listened to, if you only share your woes and not your victories.” (Brenda Kleinsasser, editor of CreakyJoints Poet’s Corner)

“While looking for the silver lining has gotten me through many difficult periods in life, I too need support – daily.” (Britt Johnson, @HurtBlogger)

“It does NO good in this online community or in everyday life to tear each other down or to look at life from a bitter perspective.” (Ashley Boynes-Shuck on her Facebook page, @ArthritisAshley)

We don’t talk about this. We pretend we are all together, but that’s not really the case. Underneath the cohesive surface of the online RA community, there is division, factions, disagreements. Even bullying. And it’s time to talk about it.

In this first of two posts on the topic, several members of the RA community graciously agreed to talk to me about their experience. This post features the four women quoted above.

No Place for Me
All four women mentioned having felt pressured to be something they aren’t, whether that was positive or negative.

Kim told me that during a very depressed period in her life, she was looking in vain for conversations about the struggles involved in living with RA. “When I left a comment or tweeted something less than positive it felt like I was the only one who felt that way - that somehow I hadn't learned from my illness, it hadn't made me a better person.”

Throughout these conversations, one thing became clear: we all struggle, regardless of our attitude. As Kim said “The truth is being chronically ill is hard. It hurts, physically and mentally.” Everyone has this in common, each of us finding different ways to cope. Sometimes it’s so hard, there is no coping. Regardless of where we are in our journey with these diseases, we all know what it’s like to be lost in the pain.

Some in the community use positivity as a defence against getting lost in the pain. Brenda said “it seems if you even try to bring in something positive, it is shot down as not being realistic …  it makes me feel like the only way is to give in and I just will not do that.”

For both, their reactions to the pressure they felt was to stay away from online groups.

Doing Well and Ashamed of It
Athletes with RA are a relatively new phenomenon. New treatments have made this possible, but it also brings about a new conundrum. Does featuring athletes with RA, such as CreakyJoints SpokesAthlete Dina Neils, give others something to hope for or does it depress those who have trouble getting through the day? Both sentiments ring true for different people.

How do the athletes themselves feel?

A recent post on the CreakyJoints Facebook page brought about intense discussion. So intense, in fact, that Britt mentioned “athletes with RA felt they were made to be ashamed of being athletic.” Ironically, the post was about how people who aren’t doing well feel depressed when reading about athletes.

I have struggled with immense guilt over my ability to now run and pursue athletic dreams that I have had for years,” Britt told me, which has caused her to struggle with the decision to share her journey. Part of that is due to the doubt that is sometimes cast upon athletes, doubt that they are not really sick. That’s why Dina Neils is a great choice for a SpokesAthlete, Britt says. “You cannot doubt her disease. She has a double hip replacement, and yet is an athlete. You can't fake that.”

Another dirty little secret from our community is that sometimes the pressure escalates into bullying. Whether it is doubting that someone really does have a chronic illness or joining an intensely critical public discussion about someone else, bullying and the pack mentality of mean thrives well beyond high school.

Many of us have been on the receiving end of these kinds of attacks and every time, it feels awful. “There are those few times that people have tried to knock me down and forget that I am human too,” Britt said. “Why is it that the negative remarks sting so much stronger than the positive remarks are able to heal?”

The Way Out
So how do we find a way through the morass of pressure?

Kim believes it is essential to leave “room to hear people who aren’t having a positive experience ... we need to be more comfortable talking about the scary dark things that we go through, as well as our triumphs.” She particularly noted that the recent #ChronicLife event on Twitter, where many joined Britt in sharing the reality of their chronic illness, was extremely helpful. “It pulled back the veil of what life is really like, all the ugly details, pains, struggles.”

Britt, too, thought that initiatives like #ChronicLife had been tremendously helpful, saying “by throwing my entire reality out there for 48 hours, I felt free.” She also believes that it was a valuable experience for the community as a whole. “I like the idea of representing that we can take charge of our feelings and search for solutions.”

This brings us back to the support element of our community. Brenda told me “I am all for talking about our struggles, but once we have talked about them and tried to work through them, whether it be from support of others in the various groups, we need to move forward.” She felt one way to do this is by sharing coping tactics, mentoring those who are having a hard time.

It may be a community, but it is a community that is made up of individuals, with all the differences and occasional similarities. Britt summed it up, saying “sometimes the only thing two people may have in common is their disease …But we can still respect each other, and offer support.”

The second post in this series will appear next week.