Living with Rheumatoid Arthritis: Simple Wardrobe Changes
When you first get diagnosed with rheumatoid arthritis, no one tells you this disease may require equipment that'll make you stand out in a crowd and not the kind of standing out that happens when you're wearing a pair of really sexy shoes. They don't tell you this equipment looks like it belongs in a hospital and there is no handy list of shops with fashionable clothes for people who have trouble with buttons.
Regular naps to restore your energy
Not typing even though you have something to say
Staying home from the party because you're having a flare
Asking for help when you used to be able to do it yourself
They don't tell you that, either. They don't tell you that you learn to run an almost subconscious continual assessment of your energy and pain levels and what that means in terms of what can be done today or about the strength you need to cancel plans. They don't tell you that even when your RA is well controlled, you'll need to make adjustments to how you do things, forever working out a compromise between what you would like to do and what you have to do.
Compromise. Learning how to balance the needs and wants of each other, to meet in the middle and to let go of what's not important is the key to a successful relationship.
Living with RA can at times seem like you're dragging around an extra person -- a cranky, overtired and constantly complaining person -- and the negotiation and accommodation you do with this disease is a relationship of sorts.
Take shoes. In order for your RA to be happy, it needs -- not wants, needs -- plenty of room around the toes and a low heel. On the other hand, you want shoes that look nice and express your personal style. Although it's possible to find nice ones in stores specializing in wide sizes (check out Easy Spirit or Walking on a Cloud from Canada - yes, they ship to the U.S.), at the end of the day, you may still end up compromising on what you want. And for a while, it feels as if this is the only thing you can see about yourself or you worry that it'll be the only thing others can see when they look at you.
However, expressing your personality and attitude can be done in other ways, like giving yourself the gift of a really good haircut or creating a trademark in accessories -- e.g., for a long time, my signature accessories were funky earrings. Accentuating other aspects of yourself can help take attention away from the medical-ness of it all and bring focus squarely back to you. And maybe if we all join the call for manufacturers of medical equipment to jazz up their products with attractive colors and designs, they might realize that no matter your age, needing to use splints or a cane doesn't mean you want to give up beauty.
Applying ice packs at home while others are having fun without you can invoke an overwhelming awareness of what this disease takes away. A feeling that you're not just compromising, but compromising yourself. Altering who you are. But does how you do things define you? Will using a cane and wearing comfortable shoes change who you are? Will respecting the needs of your body, enabling it to do it all again tomorrow be a bad thing? Are you not helping yourself to live better by making compromises?
There are days this makes sense, days where through these compromises, you go one level deeper and in realizing that it is about being with your friends, not about where this happens, you start to figure out what's important. Sometimes, as you change how you do things, you find out that letting others help you can be an expression of love and that life is more civilized lived a little slower. On those days, if you squint, you can begin to see that your RA gives you the gift of questioning the prevailing definition of how we're supposed to live. That not doing things the way you used to can be a good thing.
And then there are the days where you have to cancel your plans or have to ration your time at the computer to 30 minutes twice a day and those days, it seems as if you're doing all the compromising and your cranky, overtired and complaining companion is taking more than its fair share. But that's the way of relationships, isn't it? Sometimes, you have to look at the big picture and know that despite the bad days, overall, you've negotiated your way to a relationship that works for both of you.
You can read more of Lene's writing on The Seated View