Living with Rheumatoid Arthritis – would a different disease mean more support?

I have a confession to make.  I’m feeling that nasty, stabby, churning feeling in my stomach when I think about what I did.  That feeling of deep anxiety and guilt.  I feel like I’m going to be struck down by lightening, as punishment for my terrible sin.

What could I possibly have done that would make me feel so guilty?

I lied.

Lying is something I do so rarely that it causes physical symptoms when I knowingly say something that isn’t 100% true.  But, as Dr House would say, everybody lies…at least once in a while.  And what’s worse, I lied about my health.

For years I have wondered: What if I had a different disease, a more well understood disease, would I have received more support?  More empathy? More compassion? 

Is it my disease or is it me?

All of us who suffer with rheumatoid arthritis, or other forms of inflammatory arthritis are familiar with the general population’s knowledge of “arthritis”.

“Oh, is that all?”

“Oh! Well thank goodness, I thought you had something serious!”

“Um…aren’t you a bit young for that?”

“Oh yes, my gran has arthritis in her thumb. Stops her from gardening sometimes”

“Have you tried fish oil/turmeric/advil?”

These are all actual responses that I received when I told people I had rheumatoid arthritis.  And these are the good ones.  The kind ones. The sympathetic ones.

Sometimes I just get a blank stare, and a quick subject change.  Other times the person uses my RA as an excuse to launch into a long list of their own aches and pains. They think their bung knee or tennis elbow is just like my RA…because they have no idea what my RA is really like.  And most often they have no real interest in finding out.

My point?  The average person has absolutely no understanding of the fact that inflammatory arthritis is a serious, debilitating, progressive disease.  That “arthritis” is not just for old people”.  That “arthritis” can attack your organs and lead to other serious, complications.  That “arthritis” is not “cured” with fish oil or turmeric, but instead may require life-long medications that can have severe side effects and don’t get us anywhere near remission or a “normal” life.  That “arthritis” is much more than an achey joint, and for some is an excruciatingly painful, disabling disease. 

After more than ten years of advocating and trying to educate on the reality of living with “arthritis”, I have achieved nothing in terms of raising awareness, not even in those whom I have been closest to.   I still get told “oh, that’s nothing” when I tell people I have rheumatoid arthritis.  But I rarely tell anyone “I have rheumatoid arthritis” anymore because I’m mostly at home.  Alone. 

Rheumatoid arthritis is also an extremely isolating disease.  And lack of understanding about the disease is one major reason why.

When you become disabled you rely on others to visit. To help you get out of the house.  To keep in touch with you and make the bigger effort.  That gets tiring for people.  Life is so fast paced and busy that many people start to resent the “extra effort” they have to expend to keep me in their life.  People get tired. I get that. I can’t say I blame them, especially when my illness is completely invisible and they have to take it on faith that I am truly in as much pain as I say I am.

Especially when I don’t talk about my pain, or my health, very much because I don’t want to be a downer.  And when I ‘m with friends, I want to hear about their lives, to feel  included in the ‘real’ world.   It has to be a very bad day for me to mention pain, so I guess I understand why people forget.

I learned very early on that no one wanted to hear about my disease, my pain, my medications, my doctors’ visits, my diagnosis, my prognosis…none of it.  I learned not to talk about it, I actually started this blog so I could “talk” about it, and get those feelings out.

Since I was first diagnosed, since well before in fact, I have never received empathy, compassion, understanding, support.  No matter how much I explained or complained, almost all of those around me gave me the eye-roll, or maybe a few platitudes, or perhaps even some well-meaning advice on how to cure this disease they know nothing about. 

No one, not one person, asked me about my disease, how it affects me, how it feels to be young and chronically ill and in chronic (often severe) pain.  At best people say nothing and change the subject, at worst they ridicule and display open scepticism

   “Come now, it can’t be THAT bad…”

“You just need to try a little harder.”

“My Mum’s best friend has that, and she’s fine!”

Again, actual things my friends and loved ones said to me.  I got more support from complete strangers than from the people I loved.

As I spent more time online, connecting with others who live with rheumatoid arthritis, I discovered this is a very common experience.  And I started advocating, volunteering, educating and most of all, supporting people in the RA community.  I was hoping to be part of changing that scenario. My blog started leaning more towards education and advocacy than venting my feelings.

But at the back of my mind, I also started wondering…

Had people failed to support me because they didn’t care about ME or did they truly not understand rheumatoid arthritis and its effects?  Did they truly not know how much pain I was in or that I needed support?  And if they did know, would it have mattered?

What if I had been diagnosed with a different disease?  Would my experience have been any different?

I will never know. 

If people knew that RA is a very painful and potentially disabling diagnosis, would they have offered more help?  Would they have tried harder to keep in touch?  Would they have offered a shoulder when I needed someone to talk to?  Would they have checked their resentment at needing to “do all the work” instead of taking my “no shows” personally and gradually stopping the invites, and allowing our friendship to drift, and eventually dissolve?

I’m very sure they wouldn’t have hurled abuse at me or accused me of fraud (faking disability).

Over the years that thought has always been in the back of my mind.  And when I moved house two years ago, that move included finding a new gym which meant getting to know new instructors.  At the beginning of most classes, they usually ask if anyone has any injuries or other limitations.  I don’t like shouting out my medical issues in front of everyone, so I approach the instructors before class.

I do this so they don’t single me out and try to push me harder than I can work.  I want them to understand that I am using the gym as rehab, and that while weight loss would be welcome, its not my primary reason for being in the gym.  I don’t find talk of burning calories and “building a perfect butt” motivating.

I’ve had instructors single me out before, thinking I’m the “fat, fifty” lady going to gym for the first time.  They get in my face, they try to push me harder, they “encourage” me by saying stupid things like “sweat is your fat cells crying” and other entirely non-sensical statements.  It ruins my workout, I don’t enjoy it.

I also do it so that they understand that I know my limitations, and I will do my own thing when I need to, adapt the exercises as I need to, or even just do something entirely different when I can’t do what the rest of the class is doing.  I have a cert IV in fitness and I’ve exercised my whole life. 

But here’s the thing – when I tell them I have rheumatoid arthritis they look back at me blankly.  And then they start talking about osteoarthritis and telling me to be careful of my knees, as if knees are the only joint that can be affected by arthritis.  But, worse than that, they STILL treat me like the “fat, fifty” lady, only now she’s making excuses!

So this time, when I went back to gym, I told them I had an MS-like autoimmune disease.

I know, I’m feeling that stabbing pain in the guts that I get when I feel guilty again.  Because, while that is true, its not my limiting disease.  

I do have lesions in my brain.  They are small, and initially it was thought I had early MS.  But I have no lesions in my spinal cord, and for a diagnosis of MS you need to have lesions in both the brain and the spinal cord.  So no “official” MS diagnosis.

BUT I have an MS-like disease.  I have yearly brain MRIs to check on progression.   I haven’t had one in three years now, because MRIs are expensive, and unless I get more symptoms I’m not going to waste time worrying about it, or spend unnecessary money monitoring it.  Currently I get occasional double vision, lose balance, numbness and tingling in my hands and feet, headaches, memory problems, and fatigue, but these are mild and nothing compared to my RA symptoms.  I already spend enough time with doctors, I don’t want to add “neurologist” to my list of specialists. I saw one regularly for a few years, all that happened was that yearly MRI and three consults per year, and me around $1200 out of pocket.  I can do without that.

I do NOT have MS.  But I have a disease that looks a bit like MS on a brain MRI.  And I have a debilitating, progressive disease that causes pain and disability like MS does, albeit in a different way. So I told the instructors that I have an MS like autoimmune disease and rheumatoid arthritis, and they cause my physical limitations, but that I’m in the gym to improve my strength and health.

And their reaction?

The instructors were empathetic.  MS was immediately recognisable as a serious, disabling disease.  They asked me about my symptoms, how the disease affects me…one even went away and researched MS and exercise and educated herself on the disease.   

ALL were sympathetic. NONE treated me like the “fat, fifty” lady.  NONE got in my face and pushed me or focused on weight loss. 

With very little information beyond “I have an autoimmune disease similar to MS” they immediately understood that I have a serious, disabling disease and treated me like I was a bit of a hero for showing up at gym at all.  I was praised for working so hard and improving my health with exercise.  Most of all, they stopped and listened. 

Which gave me the chance to tell them about my RA, and explain that my arthritis and joint pain is far more debilitating (for me) than my demyelating lesions in my brain. 

To be clear, before the outrage begins, neither RA nor MS is better or worse than the other.  Both can be mild, or completely disabling.  This is NOT about comparing diseases…or proclaiming one disease worse than another. 

It’s about the general knowledge and level of awareness in the community about these two diseases.  MS, in my part of the world at least, has a much higher profile.   

While a lot of people don’t know what MS is exactly, they have a sense that its serious. 

And while a lot of people don’t know what RA is, they have sense that its nothing serious.

And that’s a huge, huge distinction.  One that makes a big difference to the quality of life of those who live with RA and could use some understanding.

Rheumatoid arthritis is often a completely invisible disease.  People who live with RA often FEEL invisible.  Unacknowledged.  Misunderstood.

And that makes me sad. 

Because people who live with RA need support. People who show up at gym with every joint on fire are kinda heroes. They deserve encouragement and extra support because exercising with RA is hard. Very hard. 

What is it going to take to make people realise that RA is a serious disease?

I really don’t know. An expensive ad campaign?  More celebrity diagnoses?  I don’t know.  I know a lot of people are working on it.  Trying hard to enlighten the masses.

Should I have bent the truth?  I don’t know.  I’m getting the understanding I need.  I’m getting the space I need.  I feel less intimidated in the gym and therefore I enjoy my workouts more. 

I just wish that saying “I have RA” would elicit that same response.