Now is the time to have RA.

If you've ever experienced a serious illness or injury, then you have probably had some pretty funny, albeit well-meant, things said to you. Let's face it, our society is not well prepared to deal with illness or unabled bodies, especially when it happens to young people who 'should' be living perfectly healthy, active lives. People want so badly to make the situation better for you (and for them), and in the process, some odd things come out. 

A really common comment particular to rheumatoid arthritis is 'Oh yeah, I have that in my fill-in-the-blank-with-a-body-part,' when in fact, what that person has is osteoarthritis, which is TOTALLY different. Jennifer, a fellow RA blogger, named her site 'Yeah, I've got that'  in an homage to this frequent but frustrating mistake.

Some people jump right onto the optimism train full speed ahead, giving you advice and suggesting things you can do, books you should read, things you should eat, not eat, try, etc., and declare that 'you're gonna be fine.' (Never mind the fact that currently, you feel anything but fine and may be tempted to slap this person silly if they keep at it.) 

And then there are the oddball comments that, in context, make sense, but don't ever really feel helpful and often make me want to scream. During my first visit with my rheumatologist, she herself said two things that struck me as strange, even though I understood what she meant.  The first, upon coming back into the room after my examination and declaring that I officially had RA, was 'but otherwise, you're healthy.'

Hmmmm.  Really?  Let's examine this statement. Other than the fact that I've just been diagnosed with a chronic, systemic disease that I will have for the rest of my life unless a cure is found, I'm healthy.  Other than the fact that I'm living in pain and unable to sleep at night and one of my toes has been eviscerated, I'm healthy.  Other than the fact that my immune system has just gone completely whack for no discernible reason, I'm healthy. Even in my overwhelmed state, I remember finding that statement so rich with absurdity that I couldn't believe she'd said it. 

The other thing she said to me, and this phrase has been echoed since by many well-meaning people when I tell them I have rheumatoid arthritis, is: 'Now is the time to have RA.'

Clearly, I didn't get the memo.

I know what folks mean when they say this.  I get it - the way RA is treated now is WAAAYYY better than it was ten or even five years ago (let alone decades ago when patients were put on bed rest and told not to move, which we now know is the worst thing you can do). People who develop RA now have a much better prognosis, much better meds, and are unlikely to end up in a wheelchair, unable to walk.

I recently finished reading Kathleen Turner's biography (RA finally has a celebrity in our corner! Hooray!) and reading about her experiences with RA drove this fact home. She developed RA in the mid 1990's and it took her forever to actually get diagnosed-no one knew what the hell was causing her feet to basically explode, and she was hobbling around in massive pain for over a year before they finally figured out what it was. It took even longer to find medicines that worked - she spent years on 'chemo' drugs (methotrexate?) that caused all kinds of horrible side effects (maybe because they are CHEMO DRUGS, people!!). She was finally able to get on trials for what I think is now enbrel (she doesn't mention any drugs by name in her book, which I think was smart) and begin to regain her strength and life back, but not before RA had taken out a lot of her joints permanently.  She's one tough woman. (I recommend the book - she has had a fascinating life, and doesn't take crap from anyone, especially the doctor who told her she'd be in a wheelchair. She told him to 'f*** off.'')

BUT, on the other hand, no matter what the intention behind saying this is, I think it's a really bizarre statement to make because to me, NO time would be the time to have RA. Or, if I have to have it, I honestly would not have chosen to have it before I turn 30, before I have met someone I'd like to spend my life with (or at least a major part of it, or hell, even just next Friday night), before I've had kids, before I'm financially in a position to take care of all my medical and health needs, and before I've lived the majority of my life out. Frankly, I don't think that NOW is the time for me to have RA. I think NOW is a pretty lousy time for me to have RA, and if I could put it off until I was 60, I would in a heartbeat. I've got a lot of life in front of me, so it's gonna be one hell of a long road, and most likely, by the time I get to the end of it, I will have spent more of my life with RA than without it.

Knowing what to say is a tricky mine field, for sure. As I said before, I understand the good intentions behind all the things people say, and I do appreciate that people are trying to be helpful. But the best advice I can give to anyone grappling with what to say to a friend or loved one who is experiencing a major illness (or any type of serious crisis) is something that has taken me nearly a year to figure out myself: simple acknowledgment goes a long way.

You don't have to say something super-optimistic or skip forward to when things will be better for them, or fill the space with advice and suggestions of things they can do and try (unless they ask you for it). Just acknowledge what's happening to them and give them the space to respond in whatever way they need.    

Comments

[millicent]

For what it's worth, I think you are handling this major roadblock with grace & spunk!Yet another warrior in our family!

[Jennifer]

Amen and Amen!

[Courtney W]

Oh my gosh! You said this very well. I have RA and healthy people always say things like "I know exactly how you feel, I hit my knee on the table". Or, "just exercise -- it's good for you". Just acknowledge that I am really trying to make it through the day. That's it! I've been reading your blog for awhile and I think you have been handling this very well. Hang in there!

[Sara]

Hi Courtney- thanks for leaving a comment. I'm happy you found me!

[Jeff]

Well said. But I confess, I can see myself as being one of those people who say, "Now is the time to have RA." I get so excited about what's happening in medicine, that I forget about the fact that the conditions still SUCK. Man, I feel for you and I wish I could see you and give you a hug when you visit Catherine later this week. Your blog is a beacon of strength.

[Sara]

Hey Jeff,
well, you're right-it is a really exciting time in medicine, and I know that is what most people mean when they say that. I'm bummed i'll miss you in SF this weekend, but can't WAIT to hear all about what you are up to in Madison....

[JB]

Hi, is it possible to e-mail you? You can e-mail me if that's easier for you: jbuchanan AT THCN DOT COM

[A Child of God]

I just stumbled upon your blog tonight. I too have RA and don't really think it is a good time. There were a lot of other things I would have rather done with my twenties and thirties.
One of my previous physicians told me that RA really wasn't all that bad?!?! Really? Tell that to my back- it seems to think otherwise.
Anyway- enjoy your blog and appreciate being able to read your story. Will keep on reading-

[Sara]

I'm glad you found me- I can't imagine being told by a physician that RA isn't so bad. Who are they kidding (and where do they get off?)

[Vanessa]

Thank you for this. I'm 24 and was just diagnosed about a month ago. I'm already frustrated with some of the "optimistic" comments when I'm struggling trying to work through pain to do things that most people do not even think about. It helps to know that other people share the same experience.

[Mara]

It is so cathartic to read this. I was diagnosed when I was 17. It never quite gets easier.

[Shelby]

I got diagnosed about a week ago. I'm loving hearing what you have to say. Thank you!!