“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, 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)
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 have felt pressured to be something they aren’t, whether that was positive or negative.
Kimberly 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 Kimberly 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 said. “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?
Kimberly 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.
Lene writes the award-winning blog The Seated View. She’s the author of Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain and 7 Facets: A Meditation on Pain.