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What I'd Like the World to Know About Living With Rheumatoid Arthritis

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This is what I want those who love me to know, and what I wish the rest of the world understood about living with chronic disease.

Please don’t tell me to keep a positive attitude

I deal with rheumatoid arthritis (RA) every day and I know how dangerous depression can be. I wish I could simply “snap out” of it when those feelings take hold. You mean well, but telling someone struggling with chronic disease that they “need to keep positive” is condescending. It makes us feel as if you’re diminishing what we’re going through. Your pep talk doesn’t help us rise above, it can leave us feeling as if we’ve somehow failed.

The reality is that I live with a lot of pain and a state of near-constant worry. When I am able to function well, I worry about how many of those days I have left. When I can’t, my feelings escalate into something that feels like the beginning of the end.

People with chronic disease struggle with this and more every day, so please — don’t judge when we give in to setback or can’t quite keep all those emotional plates spinning in the air. And know that if you’re loved and trusted enough for us to reach out to you when those plates fall and shatter, we don’t need you to have all the answers — we just need you to be willing to listen.

I, along with others struggling with chronic disease, are not trying to be martyrs. I am just trying to make you understand that pushing through the pain and depression is not an unknown concept. We do it more often than you might realize and deserve credit for the times we succeed, not reprimanded when we don’t.

Mean what you say, say what you mean and please, make it easy for me to accept your help. 

When you live with chronic disease, it’s not easy to face the reality that you need help. It’s harder when that reality is met with vague, “Let me know if you need anything” statements – the kind that sound (because I think they are) like something people say when they don’t know what to say.

I am blessed with people in my life who genuinely want to help. Yet regardless of how heartfelt the offer is, it’s never easy for me to hear.

Please know that I appreciate that you want to help. If I’m hesitant, it’s because I hate accepting help — even it comes from the heart. For me, the thought of being needy is embarrassing, and the idea of being a burden terrifying. I am worried that I may unknowingly request something that you feel too personal or inconvenient or frivolous. And sometimes I’m so consumed by whatever challenges I’m facing, I can barely decipher what it is I need in the first place — let alone figure out how to ask someone else to provide it. It’s not that I don’t need your help, it’s that I don’t know how to ask for it gracefully.

What I can accept gracefully, though are offers that don’t make me feel as if I’m asking the world of you. An, “I’m going to the drugstore, can I pick up your prescriptions while I’m there?” or “Are you feeling up to a visit this afternoon? I’m going to be in the neighborhood” or or even “Holy roots, Batman! When can I come over to slap some hair dye on that head of yours?” is priceless — and so much easier to accept. 

No, you really don’t know “just how I feel” – and I don’t expect you to.

I have no doubt that your knees creak and I’m sorry that your joints ache. I know you honestly think you understand what I’m going through because you watch your grandmother/father/uncle/neighbor struggle with arthritis, too (hint – they might have osteoarthritis and yep, it’s a bitch but it’s not RA). I know you are well-intentioned, but unless you live with a chronic disease – RA or otherwise — you have no clue what it’s like.

To put it in perspective, telling someone with RA that you know how they feel because you have arthritis in your knee is like telling Michael Phelps you know how he feels because you were on the high school swim team.

RA causes my body to attack its own tissue, meaning I live with pain that is at best omnipresent and at worse, horrific. And despite having the word “arthritis” in its name, RA doesn’t limit itself to joint damage. Given a chance, RA can go after the lungs, heart, eyes, airways, blood vessels or organs. It’s insidious and loves to keep me — and my doctors — guessing. What I have is a chronic, autoimmune disease that on a bad day leaves me feeling like I’m coming down with the flu after being hit by a train and on a really bad day, lands me in bed with so much pain I can’t move – but fortunately I’m way too sick to really care. And in case that wasn’t enough, RA (and the drugs used to control it) weakens my bones — bones already made vulnerable by a lack of cushioning normally provided by healthy joint tissue. As a result, my bones are more prone to fracture — as my recently broken ankle attests. And as there is no cure. The best I can hope for is to slow the damage it causes — damage that once done, is permanent. I will have this disease for the rest of my life. 

 So honestly, it’s OK that you don’t know how I feel – I hope you never do.

It’s really, really lonely.

Everyone has their own lives, and I appreciate that. Really, I do. But once the “newness” of being sick or injured begins to wear off and visits from concerned friends and family start to taper off, prepare yourself for the very real likelihood of spending a fair amount of time feeling alone and abandoned.

Can’t imagine what that must be like? Let me help you. 

Imagine spending weeks in the house without ever going outside, seeing your friends or leaving your bed. Imagine being in pain and scared and heart-achingly sad over a holiday weekend where you have nothing to do but focus on how everyone you know had plans that didn’t include you (some may say this is a moot point given you may not feel up to participating — but I assure you, not being asked makes a horrible situation worse). Imagine living vicariously through social media, but signing off when you just can’t bear seeing all the festive posts from friends out celebrating while you’re so depressed it physically hurts.

Imagine waking up in the morning and dreading the day in front of you because you know it means you’ll be alone for hours on end.  Imagine needing to talk to someone but not being able to because they’re all busy — or worse, they’re avoiding you because it’s unpleasant and besides, they just “don’t know what to say.”   

That is the kind of loneliness and despair and depression I’m talking about. 

“It could be worse.”

Of course it could be worse, I could be dead. 

In the grand scheme of disease, there are many far worse than RA. That said, knowing others have carried burdens heavier than mine doesn’t leave me feeling particularly grateful to have RA.  

“You were doing so great yesterday.”

Thanks for reminding me. And I might be doing great again next week. But right now — not so much. 

“You know, I bet you’d feel better if you stopped eating ___.”

Seriously!? I can’t believe all the time scientists have wasted trying to come up with a cure for this sucker when all you really have to do is give up carbs/red meat/high fructose corn syrup/red dye/gluten/vodka…

I assure you, if curing RA was that simple, no one would have RA.

“Have you tried ____?”

I know exercise is good for me. I also know that when I am experiencing a flare, just getting out of bed is a Herculean task. I do what I can, when I can. 

I understand that the supplements your sister-in-law’s brother’s godson took were nothing short of miraculous and I appreciate your wanting to help. But I am already taking enough drugs to down a wildebeest and I’m working with a barrage of well-trained specialists — all in an effort to manage my RA. So please don’t become offended if I don’t put your suggestion to immediate use.  It’s just not that easy. 

And please, do me (and everyone else with “moderate to severe RA for whom methotrexate did not work”) a favor and please don’t talk to me about the happy, rainbow-spouting wonderland drug manufacturers suggest waits for those who take their magical biologics. These are scary, serious drugs. No matter how promising those commercials look, there is no magic bullet. I wish there was – but there isn’t.   

For now, the best I can hope for is to be able to hang onto a little bit of my old life a little bit longer.

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Lead photo by Thinkstock Images

Originally published: January 31, 2017
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