30 Things about my invisible illness you may not know

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 living, breathing human beings, not just dry statistics.

So I’ve decided that even though I missed National Invisible Chronic IllnessSwellyHand2 Week when it happened, I’m going to participate now anyway. It’s hard to do, because I’ve kept the fact that I have rheumatoid arthritis mostly to myself for many, many years. But hopefully, you’ll come away with better understanding of what RA is because you read this post, and because now you know someone who lives with this invisible illness every single day of her life.

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, being told it was “all in your head”  like a lot of people do before finally getting a diagnosis and actual 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  and sore 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. Most have not worked for me. I think mainly the people who sell these things are making money off the suffering of others, taking advantage of their hopes for relief and a cure. This makes me angry. The one alternative treatment I’ve taken that did help was accupuncture. Naturally, my medical insurance wouldn’t help me pay for it, so I couldn’t use it. 

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 since I was first diagosed, they mostly don’t deal with the pain RA causes. It’s hard to accept that I will always have RA, that I will always have to deal with it, and that 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: Go skiing in the Austrian Alps and backpacking 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. They have no idea how serious the disease really is.

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

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. Giving up that freedom, I guess, is the hardest.

20. A new hobby I have taken up since my diagnosis is: writing. 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 show each and every day of their lives, and to be grateful for and mindful of the good things, the gifts, of the world I live in.

23. Want to know a secret? One thing people say that gets under my skin is:  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 and that if I’d try harder, it would go away. Well, it won’t. I also get frustrated when people say, “But you’re too young to have arthritis!” The fact is, children get RA. Young adults get RA. I was only 31 when I was diagnosed. Of course, I’m not so young anymore so people don’t say that much to me now.

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. Just wait it out.

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 so they’ll understand a little more. 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, others 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 actually 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. I take a sort of secret pride in that.

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 diseaases. 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 you and everyone else in the world. We are not “other.” We are you.

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One Response to “30 Things about my invisible illness you may not know”

  1. What a wonderful post. All to often others just do not “get it” about pain. This is especially bad if the other is one of your doctors. But many do understand and those are to be treasured.

    One thing you have in abundance is real courage (sometimes I call it “cussedness”). It helps to face what we must.

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