When you have rheuma, it can hard to explain to others why you can’t just “hurry up” or “do” like anyone else. If you’re like me, you prefer to keep quiet about the pain you’re in – you don’t want people to think you’re a wimp, or a whiner, or that you’re angling for attention and sympathy.  Or maybe you just don’t want to have to launch into the whole complicated, mind-numbing explanation about your disease.

Again.

The trouble is that people usually can’t see rheumatoid arthritis. Those who have it generally don’t “look” disabled, even though the disease may eventually confine us wheelchairs or leave us bedbound and helpless. We hope that the cocktail of drugs we take each day will prevent that unwanted denouement – even as we hope they don’t prevent the proper functioning of our stomach, liver and kidneys. We dream that a cure will be found in our lifetimes, and that maybe it will happen in time to help us, too.

We’re pessimistic optimists.

Rheuma is an invisible disease. But we who have it frequently have to cope with the very real and varied disabilities that it causes. The inflammation and pain of RA often moves from joint to joint in our bodies. It’s if the disease is consciously malicious, going out of its way to conjure up new challenges for us to overcome.

Here’s an example: A few days ago, one of the metatarsal joints in my foot was painfully flared. I limped around all day like I’d broken several toes but didn’t have enough sense to go to a doctor. Yesterday it was my shoulder joint. The flare waited until late in the day to manifest, so when it was time for bed, I had a hell of a time getting my stretchy, pullover blouse off. Then had trouble sleeping because I couldn’t get comfortable. Today (and just about every day, if I’m honest) my hands are achy and twinge-y. When I went to hang a small fry pan on the pot rack after washing up my breakfast mess this morning, just reaching up and fumbling the handle loop over the hook made me yelp, groan and, once I’d accomplished the task, cuss ferociously under my breath.

Rheumatoid arthritis pain is real. It can be, at times, absolutely excruciating. At other times it’s bearable, but it’s always exhausting. You have to move carefully. Slowly. You can’t just “do.” A flared joint is stiff. It “screams” when it’s forced to move. It won’t willingly bear weight. And there’s not much you can do about it but wait it out and take painkillers in the meantime.

Of course, painkillers constitute their own, exclusive little corner of hell.

But back to the “invisible” disease. When our daughters were young, my husband loved to take them hiking and fishing with him. Sometimes I went with them. If it was a “good” rheuma day, hey, no problem. I could tramp around and cast a lure with the best of them. But if it wasn’t, it meant bringing up the distant rear during the hike. I simply couldn’t walk fast enough to keep up. Each step – literally – hurt like a you-know-what. That I was walking at all – and even taking on a three- or four-mile hike in spite of my feet hurting like they’d been beaten with bamboo sticks all night – was a source of an odd and private pride for me.

After a while I’d fall so far behind that I was hiking alone, hoping to God that I didn’t trip and fall or twist an ankle, and that my family would notice my absence and maybe come find me if I did. Because I didn’t complain, they weren’t concerned about me. Once at our destination, the day would stretch out interminably. There was usually no place to sit down. I’d endure hours and hours of standing or gimping along the shore on my painful feet, casting for fish that, naturally, were totally uninterested in being caught and cooked for supper.

Still, I didn’t talk about how much I was hurting. I’d chosen to come along, so I did my best to smile and laugh. I really enjoyed being out in the wilds with my family. I enjoyed basking in the fresh air and bright sunshine, resting my office eyes on the pretty, natural surroundings. I’d spot flocks of Sandhill cranes passing high overhead, their weird calls finally reaching my ears like whispering ghosts. I’d watch great blue herons stalk tiny fish in the shallows (far more successful fishers than I could ever hope to be). I’d stare down the occasional herd of slow-moving cattle that wandered by.

And then there’d be the long, long hike home. I’d bring up the rear again.

Invisible illness. I remember one night in Germany when my hands were so painful that I couldn’t work the door lever to my bedroom. I could push it down with my elbow, but I couldn’t bear to pull it open once it was unlatched. The agony that little bit of pressure caused was simply more than I could bear. So I stood at the door and cried like a baby. Finally, I worked up the courage to take hold of it and pull. There was no choice. I had to go to the bathroom.

And taking care of that was another almost impossible obstacle.

I was fortunate enough to have the disease go into “remission” for a long time. While it was, I began to forget how painful my life had been before. I got used to being able to do what I wanted to do again. I backpacked. I canoed. I fished. I gardened. As a journalist, I covered local wildfires and kayak rodeos, bow-hunters and bears that had wandered into the suburbs. All of these required a lot of walking and sometimes, running. I did it. I even participated in whitewater rescue training with the local fire department, wetsuit and all.

Now the rheuma is back and steadily ramping up. This time, I’m speaking out when I hurt. I’m asking for help when I need it instead of suffering in silence. I’m researching the disease, learning all I can about it and talking with my rheumatologist, asking lots of questions, making him prove his stuff. Most of all, I’m learning to be my own advocate. I’m not whining. I’m not lazy. I’m sure not a wimp. Rheuma may be “invisible” to others, but it’s still disabling.

That’s a lonely, isolating condition to be in. Speaking up – and speaking out – is vital.

National Invisible Chronic Illness Awareness Week  was Sept. 14-18. I missed it. One of the things bloggers who suffer from chronic illnesses did was post their responses to the statements below in an attempt to help the “well” world understand that these illnesses are common and that the people who suffer with them are human beings, not dry statistics.

Rheumatoid arthritis is very poorly understood by the general public. It’s considered a disease of the aged. Because of advertisements for over-the-counter remedies and painkillers, people think that it’s an easily treated disease. It’s not. And it affects children and young adults as often as it does older people.

So I’ve decided that even though I missed National Invisible Chronic Illness Week when it happened, I’m going to participate now anyway. And hopefully, someone out there will have a better understanding of what RA is because of it.

1. The illness I live with is:  Rheumatoid Arthritis.

2. I was diagnosed with it in the year: 1987.

3. But I had symptoms since: 1987. I was one of the lucky ones. My doctor diagnosed RA quickly. I didn’t have to suffer with it for years like a lot of people do before getting a diagnosis and treatment.

4. The biggest adjustment I’ve had to make is: accepting the frustrating disability RA causes periodically.

5. Most people assume: That RA is a disease mainly of the elderly and that it’s easily treated. It isn’t and it’s not.

6. The hardest part about mornings are: putting my feet on the floor and standing up. My feet ache like I’ve been standing on them all night, even though I haven’t. My joints, all over my body, are also stiff in the morning. It takes a while to warm everything up and get moving.

7. My favorite medical TV show is: ER. I loved the character development and the excellent writing.

8. A gadget I couldn’t live without is: my hands-free can opener. RA affects my hands nearly every day to some degree, and sometimes they hurt badly enough that I can’t grasp things like manual can openers or even a cup of coffee. I also love my indoor grill because it helps me cook easily and healthily.

9. The hardest part about nights are: When I’m suffering a flare in a joint, the pain keeps me awake. I can’t get comfortable. So I don’t feel rested when morning finally arrives.

10. Each day I take four sulfasalazine tablets, one half of an Arava tablet, folic acid, magnesium, and Tylenol. Sometimes I take several doses of tramadol, a synthetic opiate painkiller, too. And I take fish oil and other vitamins in the hopes that they’ll keep me healthier and help my joints.

11. Regarding alternative treatments I: have tried many. They don’t work for me. I think mainly the people who sell these things are making money off the suffering of others, which makes me angry.

12. If I had to choose between an invisible illness or visible I would choose: Neither one, frankly. Both types of illness are difficult to deal with in their own ways.

13. Regarding working and career: Working is often very hard, even though I love the work I do. It’s tough to concentrate when I’m in pain. And sometimes, when I’m having a flare it keeps me from moving around easily and sometimes, from moving at all. That doesn’t help the career in any way.

14. People would be surprised to know: How truly difficult it can be to live with excruciating, disabling pain day after day and how much determination and courage it takes to keep on doing – and smiling – in spite of it.

15. The hardest thing to accept about my new reality has been: that there is no cure for rheumatoid arthritis and that even though the drugs to treat it have improved, they mostly don’t deal with the pain. I will always have RA. I will always have to deal with it. And it will continue to disable me as time passes in spite of everything I try.

16. Something I never thought I could do with my illness that I did was: Going skiing in the Alps and hiking in the Desolation Wilderness. It hurt and I was slow, but I did it anyway, and I was proud of myself.

17. The commercials about my illness: give the general public the impression that RA is easily treatable and controlled by drugs. It’s true that some drugs may help some people, but it varies from person to person and often, the effects of the drug don’t last. In addition, they all come with potentially serious side effects, some of which are worse than the disease the drug is supposed to treat. This is very frustrating as it makes people think that those of us who have RA are just not trying hard enough or that we’re whiners.

18. Something I really miss doing since I was diagnosed is: getting through whole days without any kind of persistent, chronic pain.

19. It was really hard to have to give up: I’ve been fortunate in that I haven’t had to give up much because of RA. I can’t do as much as I used to, and often mundane tasks like grocery shopping are much, much harder than they should be. I’ve had to learn to pace myself and accept that sometimes, I just can’t do what I want to do.

20. A new hobby I have taken up since my diagnosis is: I write all the time. I have two blogs and I write fiction. None of it’s been published yet, but writing is one of the things I can do that distracts me from pain. It’s a good and beneficial thing.

21. If I could have one day of feeling normal again I would: go cross-country skiing or snowshoeing.

22. My illness has taught me: to be aware of the courage people with disabling illnesses and injuries have, and to be grateful for and mindful of the good things in my life.

23. Want to know a secret? One thing people say that gets under my skin is:  when people say that I should walk more, or exercise more, and then I’d feel all better. The assumption is that my pain and disability is my own fault. I also get frustrated when people say, “But you’re too young to have arthritis” or “Oh, I know how you feel. I hurt my knee the other day …” They don’t have any real idea how I feel.

24. But I love it when people: try to understand and show compassion and kindness. And I love it when they don’t act like I’m just whining for the attention it brings me. Honestly, why would anyone pretend to hurt all the time?

25. My favorite motto, scripture, quote that gets me through tough times is:  This too will pass.

26. When someone is diagnosed I’d like to tell them: Try to keep a positive attitude and don’t suffer in silence. Speak up about your illness and educate your loved ones and the people around you. Don’t feel guilty when you can’t do everything you used to, or when you have to say no to invitations because you’re hurting. You are your own best advocate. And be sure to find others to talk to, even if it’s just online, who also have RA and can understand what you’re going through and offer moral support. It helps a lot.

27. Something that has surprised me about living with an illness is: how tough I am. I keep going with pain that I know would floor my loved ones and friends if they could feel it. I’m also surprised sometimes at how I can still smile and have a sense of humor in spite of feeling terrible.

28. The nicest thing someone did for me when I wasn’t feeling well was: when a co-worker stopped by one day when I’d stayed home from work because of a flare. He asked if there was anything I needed from the store or if I’d like him to bring me a meal. I was very touched by his kindness.

29. I’m involved with Invisible Illness Week because: even though I’m a few weeks late, I think this is a good way to raise awareness of RA and other invisible but debilitating and disabling diseases. Having RA can be very lonely, and because most people don’t understand what it is and what it means to the person who suffers from it, there’s a lot of guilt that goes along with not being able to do as much as you want to. It’s frustrating and sometimes humiliating. So anything that makes people more aware is good.

30. The fact that you read this list makes me feel: good that you’d take the time to learn more about me and about rheumatoid arthritis. I hope you’ll pass it along to other people you know so they’ll understand more, too. People with RA are people just like you. We love, we laugh, we hurt, we weep, and we keep going, just like everyone else.