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.


Annette said…
In some areas I feel a slight pressure to complain, dwell on problems or to welcome uplifting statements in frames. But that does not fit into my conception of myself and I don't have to be there. If Britt is able to climb and aims for mountains that's great. I feel mildly unhappy that I can't do the same, but treatments are different now, and the effects of chronic disease are inconsistent, so I don't judge her. People should feel inspired by achievement. My regrets come when I watch the Olympics.

I've learned a lot in 33 years of RA and enjoy sharing my opinions; That does not mean anyone has to read them. I prefer to talk about what I can do and what I've learned. Maybe that's easier because I am in a supportive private group where we all share the bad and the good (and I must say that as we are aging we are complaining more).

Long ago I made a resolution to comment more often on blogs, and the people I try to hardest to follow or follow back are those who are new to twitter and have a chronic illness. We all do support differently - just don't talk to me about cleanses and the road back.

Star said…
Great post!

When I was first diagnosed over 10 years ago, I spent a lot of time in various forums. At first I found it helpful because I wasn't getting any real info about the experience of living with RA from the medical professionals I worked with, but eventually I was overwhelmed by the negativity.

Recently RA guy posted on facebook that he had been getting backlash because he was too positive.I laughed out loud because I thought it absurd that people were annoyed by his successful treatment and positivity, then I thought about it...

I love Chef Seamus Mullen, but of late have been very frustrated to read him using the phrase, "cured my arthritis" when talking about changing his diet and exercise routine. Part of me was happy that he was symptom free but part of me was frustrated because his choice of words was perpetuating this public idea that if we all just ate better, quit gluten, ate paleo, etc. we'd all be cured. Then I realized I was also feeling jealous that he wasn't on a biologic, didn't rely on steroids to quell flares, etc...

There is so much fear that goes along with chronic disease. Media attention on success stories can feel threatening. I think about some of the insane commercials for RA drug where they show a sad lady who all of a sudden climbs a mountain...so misleading. Maybe some people have that kind of turn around, which is great, but that is not representative of the majoirty of drug recipients.

We all want to be seen, heard and understood. Sometimes that means commiserating with others who are flaring and struggling like you, sometimes that means celebrating when you have a victory. Regardless each of our journeys is valuable and has a right to be expressed.

It always baffles my mind to see people hate commenting or demeaning something that someone else values. What the hell is the point? It can't possibly raise you up to spread that kind of negativity. If I don't like something someone is writing...I stop reading. As Amy Pohler says in her book, "good for her...it's not for me".

Looking forward to the next part of this post.
Anonymous said…
Lene, thanks so much for tackling this sensitive and oft overlooked topic. I suspect that it's common in all chronic disease communities. Looking forward to part 2! Andrew
Mary Fletcher Freeman said…
Lene, I love this blog so much! And I thought it was awesome to see you do a post on the elephant in the online RA support group. My doctor is brilliant and intelligent but also very clinical. When I was called back to the office after blood work came back, she sat me down and told me I had RA. And that was it. No break down, explanation, nothing. Just a script for Methotrexate and I was on my way. My head was spinning! So I went online and started to research being the geek I am. And the things I read and saw started to seriously frighten me. During this I stumbled upon an RA support group. I started participating heavily, being a known presence. I loved this group so much. It changed everything for me in terms of my ooutlook and I made friends. And then about two years in I was online one night and I saw this odd and rather inappropriate post by one of the administrators. When I commented that it seemed inappropriate for the group the two administrators started to personally attack me and then rally 60 some members in an online mean girl session. I was very hurt and ended up leaving the group before I was removed. I recently, after a year, found a new group that I love. We rally around those struggling and cheer for good news and achievements. I don't understand the need to cut others down or judge. We are all just coping as best we can and making the best decisions for ourselves. Thank you Lene for always being relevant, observant and the truth teller you are!
Annette said…
Do you think that some of the online rankings systems factor in to this? When you have to get people to vote for you, so that you can be number 1, doesn't that bring out some unhealthy competition and favouritism. I don't mind voting now and then, and you become aware of more people as you do it, but choosing one over another and turning help and support into a competition is not productive.

I would rather see a listing of every RA/Autoimmune/chronic illness help and sharing blog without rank.

And for sure I have missed something big in the #rheum community to be so unaware of the issue that this is dividing us. Too bad we can't all get together and have lunch.
Oh wait - then you might notice that I have grey in my hair. Oh well.
Myna Bird said…
Oh yes! The social media factor I think plays a big part. Click bait is usually targeted with shock value so guess what is going to get most click through? "Person lives with RA and gets gradually better and sometimes worse" or "Doctors hate her, see why!" most people clicking through are also general public.

No I don't hate blogs that are all positive but I do dislike misinformation. I do have to remind people that I can't just replace my joints and that the cheapest forms of medical splinting is butt ugly and still very expensive! And in part I want to remind people of this because right now too many people see a few wonderful examples and say "it's sorted, I don't have to think about this any more and I don't have to help any more."

We can also be filtered out of context. Not just if a post becomes popular but the way algorithms work.
Anonymous said…
One of the best so farI've read..... Finally a voice that's has meaning, hearing, understanding, etc. This is a very isolated topic. Very lonely from NC.