Here’s the thing about rheumatoid disease: you can‘t predict it. One moment you feel great, the next … not so much.
When I first got RD, that unpredictability upset me as much as the pain did--and that was a lot. The amount of pain I was in affected everything else in my life. If it was mild, I could still do everything I wanted or needed to do, except maybe a little bit slower. If the pain was moderate, it slowed me down a lot more, but I could still manage most things. Severe pain, though, frequently stopped me dead in my tracks.
And I could never predict which type of pain I’d have to deal with each day--or even moment to moment. Although my disease intensity has been a hilly affair--lots of peaks and valleys--over the years, its unpredictability has remained constant.
I still never know what to expect.
If you’re like me, you base how you judge yourself on how well you perform from day to day. You take your responsibilities seriously. You strive to get things done the way you and others expect you to. And what you accomplish directly affects your self-esteem, whether it’s making the bathroom sparkle or finishing that report right on deadline. If you’ve got a family, that you step up reliably to your responsibilities matters even more to you. Your spouse and kids are depending on you to make an adequate income, help the kids with homework, and put together a nutritious evening meal for everyone. It’s as important to you that you get it done as it is to them--and you judge yourself based on how well you do it.
But with rheumatoid disease, sometimes you just can’t. Whether it’s pain, fatigue, malaise, brain fog or even all of them at once, the fact is, RD can bring your life--and your plans--to a screeching halt.
Planning life with RD is tough. Friends and family want you to be part of an outing or a get-together, and you want to be there. But more often than you like, your RD symptoms force you to ask for a rain check or even cancel entirely. Not only do you miss out on the fun, you worry about what people must think of you. Do they think you’re flaky and unreliable? That you’re snooty and don’t like being with them? That you’re rude and don’t care if you’re ruining their plans?
Feeling bad about frequently having to change or cancel plans is natural, but it sure doesn’t help you cope with the disease. Stress, low spirits, and depression can all make rheumatoid disease symptoms even worse.
So what to do?
With almost 28 years of experience with this disease, I’ve learned a few things about coping. So here’s my take on unpredictability-guilt:
First, acknowledge that you’re doing everything you can to treat the disease so it can’t screw your life up so much. It’s true, so own it. Whether you’re treating it with your diet, supplements, and exercise, with drugs, or with some combination of both, you’re actively working, every single day, to feel better.
This is no small accomplishment. You have to be vigilant all the time. You have to take meds on schedule. You have to do things you’d rather not do or don’t feel like doing. You have to exercise when you feel so rotten you’d much rather curl up in a ball on the couch. Or maybe you have to inject yourself with a powerful drug that you know will make you feel awful for the next three days--or even trigger life-threatening side-effects--but you do because you want to feel better overall.
You know, so you can get on with your life.
Doing these things takes courage and determination, inner-strength and willpower. Acknowledge that! You might not have been able to go out with friends last night, but because you’re faithfully following your treatment regime, you were able to meet other, perhaps more important, responsibilities. Be sure you give yourself kudos for what you accomplished instead of beating yourself up for what you didn’t.
RD is not for sissies.
Next, try to accept that unpredictability is now part of your daily life. It’s not going to just go away. Like any other circumstance in life that you can’t control, the only way to deal with it is to make the best of it. Go with the flow. Slow down and look at what’s really important in your life, and let the rest go.
And stop berating yourself. When your friends or members of your family get sick, you’re kind and compassionate with them. You try to cheer them up, encourage them, and do what you can to make their lives easier.
So why not do the same for yourself? Just as you wouldn’t condemn them for getting sick and upsetting your plans, don’t do it to yourself, either. Tell yourself--and mean it--that it’s OK you had to cancel, that you’ll try it again on another date. Wish yourself a good night’s sleep, and that you’ll feel better tomorrow. Do it again and again, each time your RD gets in the way of your plans. Remember: you didn’t ask for this disease. There’s nothing you did to make it flare on your parents’ anniversary dinner date. It just did.
And remember that just as you’d forgive them, they’ll forgive you. People are kind. If they know you, they know how hard you’re working to overcome the effects of your RD. They know how much you care about them, and that you wouldn’t change or cancel plans unless you really had to.
And if they don’t? They’re not very good friends or very loving family members. Maybe it’s not such a bad thing that you’re not spending your precious time with them.
Having rheumatoid disease is no picnic. Denying yourself compassion and forgiveness can only make it worse.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?