Living with rheumatoid arthritis and I used to have a popular blog once

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I used to have a popular blog a few years ago.  I was up there with the big RA bloggers, quite well known.

And then I did a few things that decimated my following.  And I did them quite purposefully. I didn’t do it to lose my following, I didn’t expect that to happen. And I certainly didn’t expect to become someone who was considered a pariah, a traitor to the cause…we’d all rather be loved than trolled.  But I did them because I needed to stand up for honesty, truth and being real.  The things my blogs are based on.  The things my whole life philosophy is based on. 

I know that makes me sound like superman or something.  My dedication to telling the truth has caused me much harm over the years. And still I think honestly is the best policy. 

The blue candle

A few years ago the RA community was getting very unhealthy.  Many were becoming very over the top (OTT) in the way they blogged about their illness.  That’s OK, everyone has to tell it like it is (for them).   I love reading raw, personal experiences.  I love people who can be that open and honest, because that’s a place that’s often very risky to access, let alone publish.  That’s the whole point of blogging, and reading blogs – getting another person’s experience. When that experience jibes with your own, or you relate to the feelings and/or physical things that person is going through that’s a powerful line of communication.  A powerful mechanism for support and comfort.  And a powerful way to build community.

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We’re all different.  We all gravitate towards different styles.  I’m not a competitive person, never have been.  Wait, I am very competitive…with myself.  I am always trying to improve on who I was yesterday.  But that’s it. Otherwise I abhor competitive behaviours.

Competition is the natural enemy of empathy. 

The “sick Olympics” is something everyone hates, but we’ve all seen or even been drawn into before.  It really only takes one person to play “my pain is worse than your pain”.   It takes two people to refuse to play.

A few years ago a very popular lady died from complications of RA.  It was horribly sad and unexpected.  I never found out the details, none of my business.  But I, and the rest of the community, mourned.

After that there was a bit of a push to raise awareness that RA can kill.  Its true, RA can kill.  But…death from RA is rare.  Its not a terminal diagnosis.  But there was a very vocal group we were pushing the idea that RA COULD be terminal and therefore it WAS a terminal diagnosis.

I was adamantly against this idea. For many reasons. 

First, a disease that can kill but usually doesn’t is not generally what we think when we hear “terminal diagnosis”.  Its actually the reverse…a disease has to almost always be the cause of death for it to be a terminal diagnosis.   At the time I followed a lot of bloggers who did have terminal diagnoses.  And it felt so horrifically disrespectful to try and elevate a non-terminal disease to terminal status for attention.

Because that’s what it was…OTT attention seeking. Not awareness raising.  Awareness raising with false information is NOT awareness raising.   Putting up false information just causes a backlash when people realise its not true.  And they don’t like it much. it doesn’t further the cause, it hurts it.

And I said so. Oooh the backlash!  The hate I received!

I was just stating my opinion and I had some pretty strong facts to back that opinion.  It seems so silly now, so many years later, writing about it.  RA is clearly not a terminal diagnosis in the typical sense of the phrase.  But at the time emotions were very high. 

So I came up with an idea.  A way to mark deaths related to RA and genuinely raise awareness.  I found an image of a blue candle and I shared it in memoriam for the lady who died.  It was the first of many candles shared.  I thought it was a beautiful gesture,  a heartfelt way to honour her and those who died from RA. 

It was also a self-limiting gesture. The candle would only be shared when someone passed, and therefore it was a very visual way to see that yes, RA does kill people, it is a very serious disease that is life-limiting and can also cause death.  But it would also reflect that its rare to die from RA, you are more likely to die with RA. 

I thought it was a great idea, and it did catch on.  Pretty sure someone claimed the idea was theirs and took all the credit for it, but I didn’t care. I’m not a credit hound. That’s not why I blog. 

And it wasn’t my original idea. My close friend at the time had a daughter who had type 2 diabetes.  She told me that they had an image that they shared every time someone died in the diabetes community.  So it was more like I heard their idea and adapted it in the RA community. 

Then another lady died.  The candle went around.   Over the course of a few months people died, the candle appeared.  I thought it was working beautifully to show the seriousness of RA.  But then the OTT crowd got a hold of it. And the candle started being shared when someone died was hospitalised or had serious complications.  The candle started being shared multiple times for the same person’s passing, over the course of months.  I spoke to one lady who was behind that push who wanted to keep the awareness alive that RA was a terminal diagnosis. She and the people who shared her philosophy pushed that idea and the candle was shared a lot.

So much that it became meaningless.

I stopped sharing it.  The point behind it had been co-opted and destroyed.  It now meant nothing because it was shared weekly to “raise awareness” that RA causes heard disease or pulmonary disease…evert time someone was diagnosed with a serious co-morbidity the candle would fly.

Which is still a noble cause…but they’d destroyed the idea behind it and I didn’t want to be associated with what it had become.

That wasn’t the meaning behind the candle.  I was disappointed that the OTT crowd had ruined it and I stopped sharing.  I was attacked for not supporting the cause.  I was kinda ostracised from the core RA community.  I was trolled.  I lost many friends and followers and readers, and I have to say, I while I certainly cared, I couldn’t have done anything else.

The community had gotten unhealthy and I was happy to no longer be a part of it. Online communities can become toxic.  A strong personality and a few followers can change everything in a relatively short period of time.

I’m not a strong personality, I’m a weak one.  If I see things I don’t like I don’t fight, I walk away.  I probably should have fought harder for the candle to be used appropriately, but hey, I was really sick at the time. Diagnosis after diagnosis were stacking up and I had bigger things to deal with. I didn’t blog for a long time.  Things actually just got worse and worse and I was very alone.

But I couldn’t do much. I hate fighting. I hate drama. I hate confrontation. Weak…yeh, I guess so. 

But from then I was no longer “arthritic chick who was raw and honest and told it like it is” I was an outrider, pariah, traitor to the cause. 

Obviously I liked it better when my blog was popular, but I couldn’t support what was happening inside the community.

Combined with another stand I took – that methotrexate is NOT chemotherapy in the doses used to treat RA  – that was the end of the popularity of my blog. 

I lost a vital outlet, a source of pride and self-esteem.  A source of joy.  But that’s the way it goes.

The OTT crowd was posting about their “chemo days” and I found this horribly disrespectful to those going through cancer chemotherapy, because it just isn’t the same thing. 

Yes, methotrexate can be a horrible drug for some people, cause horrible side effects. Even life-threatening ones (though very, very rare).  But its not the same as having a terminal disease and having your life depend on chemotherapy.  Facing THAT is just not the same as a weekly injection or tablet that is the gold standard treatment for RA, helps most people and the most common side effect is some nausea the next day. 

Yes, some people suffer severe side effects. Those people can stop the methotrexate and try something else.  People whose life depends on their “chemo days” can’t just decide  to stop the chemo…they’ll die.

The whole thing really upset me and I wrote an article explaining the facts, backed by science and reviewed by a prominent rheumatologist. 

When I was first diagnosed with RA I was told that methotrexate was chemotherapy. I was horrified and afraid and I avoided taking methotrexate for a year.  I learned later that year was my “window of opportunity”.  It’s possible that my RA could have been halted and put into remission if I’d treated it aggressively in the first year.  I now know that it was the worst mistake I made, and I made it because I believed some strangers online who were fear-mongering.  I didn’t want other people wasting a treatment-year because the “methotrexate is chemotherapy” crowd were at it again.

My article was published on CreakyJoints and the backlash was huge. I was trolled, I was abused.  And every time CreakyJoints would share it, the trolling would start again. 

I regretted writing it at a really low point. But now I’m proud.  That article made real change.  I don’t see much about “chemo days” anymore.  And I helped to change that.  That’s important to me.  My blog may not be popular, but it meant something. It did something positive for the RA community.

Because misinformation does nothing but HARM the cause. As I kept saying, over and over, RA IS bad enough without exaggerating the treatments or trying to make it a terminal disease. 

RA is horribly painful, can be disabling and life-destroying.  We need to get the facts out there, not some OTT half-truths.

My blog never recovered.  I don’t have many followers.  But I’m proud of the stands I took.  Of course it feels better to have a popular blog and have people say lovely things about you.  But it needs to be based on honesty, raw truth and telling it like it is.  Because that’s who I am. 

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2 COMMENTS

  1. You know I only blog for myself if others read it that is great. Most dont and that is OK as well. I am glad I do not care. I have to please exactly one person, me. But that one guy, he is bear to work for Hopeful someday he will mellow out.

  2. I’m still here reading Neen. I also agree with both of the points you stood up for. This disease is hard enough to live with without people like that scaring people who are newly diagnosed into thinking that they are going to die or have to have chemo. I’m on mtx, have been for about 25 years now, do I like it no, does it help me yes definitely.

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