Today’s Health Activist Writer’s Month Challenge is going to be tough for me, because, as irony would have it, my RA is flaring and my hands/wrists are really hurting. But, in the spirit of participation, I’m going to give it a try. Yesterday, I played a bit of “catch up” and posted responses for Days 1-9 of the #HAWMC. You can view them, HERE! (So fun!)
Today’s prompt suggest we pretend to write a question about our condition, as though we are typing it into a search engine like Google, or asking a question on the notorious Yahoo Answers forum. (Note: Yahoo Answers can be useful, but you should not use it to self-diagnose!) Then, we are to craft an answer to our question. The questions and their resulting questions can be serious, or silly. I decided I’d do two. They aren’t really funny, but my book Sick Idiot is, so check it out!)
Question: “Is rheumatoid arthritis the same as ‘regular’ arthritis? My grandma has that.”
Answer: No, rheumatoid arthritis is not the same as what you are referring to as “regular” arthritis. That is called osteoarthritis, or OA. Both RA and OA are forms of arthritis, but there are over 100 conditions that fall under the broader umbrella of arthritis and rheumatic diseases. Sometimes, “arthritis” is used as a general term to encompass all of these arthritic and rheumatologic conditions, but usually when people say arthritis, they mean OA. Unless … they don’t.
OA is a type of arthritis that often comes with aging or the overuse of joints. So athletes and labor workers may get it, middle-aged people and senior citizens often get it, and sometimes it can be the result of a bone and joint injury, or, from being overweight or obese (which adds extra stress on the joints.) Sometimes, OA can result from congenital bone and joint deformities. But there is really no “one-size-fits all” answer. I’ve had OA since my early-20’s, and I’m not an athlete, or obese, and I’ve never broken a bone or done manual labor.
But I do have OA’s nasty cousin, RA. And I’ve had a form of it (whether juvenile idiopathic arthritis or early-onset adult rheumatoid arthritis has long been debated over the years,) since childhood. I was diagnosed sometime around the age of 10 or 11, and it really began to affect me during my middle and high school years, and still does to this day, despite some periods of remission. RA is “not your grandma’s arthritis.” In other words, while OA and RA can co-exist in certain people, a person with RA is more likely to develop OA as a comorbidity than vice versa. This is because where OA is borne of more structural and “mechanical” issues, RA is autoimmune. Autoimmune, in a nutshell, is like civil war going on inside a person’s body. The immune system is overactive and is always fighting itself, attacking healthy and”good” tissues, organs, joints, cartilage, and cells, instead of attacking the “bad guys.” Autoimmune means that there is more “sickness” involved than “just” joint pain and issues with joint mobility.
This isn’t to diminish OA which can also be incredibly painful. In fact, arthritis in general is the leading cause of disability in the United States. But while both conditions are painful, RA is more serious. Yes, OA can cause people to become disabled or handicapped, or have to quit working or use assistive devices like a cane, crutches, or a wheelchair — no one is arguing that fact, and I do think that OA often gets unfairly overlooked or downplayed because of other, sometimes more life-altering arthritic conditions. But if we’re going to be honest and frank, here, RA is much more serious. A person with OA could develop it in their knee because of a running injury and they may not be able to run any more. But they are not “sick” every day too, with an incurable illness that can attack vital organs like the heart, kidney, and lungs, and they do not have to take sometimes-dangerous drugs including biologics, immunosuppressants, and chemotherapy drugs for their OA. Patients with OA are not at an elevated risk for cancer, infertility, and heart disease like those with RA are. In short, RA is just a little more serious. It’s almost like having OA in all of your joints, and the flu, and then some. For life.
I have RA and OA, so I feel that I can speak freely on both. My OA bothers me more on a daily basis. I can tell the difference when my OA is bugging me versus an RA flare, and it frustrates me if my doctors don’t acknowledge these differences and the nuances between the two conditions, because, as most rheum patients can attest to, they are distinct. So, my OA pain is more constant. However, when my RA is flaring, it is way more severe, debilitating, and incapacitating — and there’s a sickness and fatigue and tons of odd symptoms due to inflammation throughout the body that goes along with it, much more than it would with OA, which, for me is only pain and stiffness. I can’t speak for every patient, only myself. But in short: OA is a condition. RA is an autoimmune disease. (And having RA puts you at a higher risk for other autoimmune ailments, too.) Neither one is pleasant, and neither is curable per se, but, in some patients, OA is more manageable. If you want to learn more about the differences between these two diseases and all of the other forms of arthritis and rheumatic illness, visit the websites for the Arthritis Foundation, CreakyJoints, and/or the American College of Rheumatology.
Question: “…But you don’t LOOK sick?”
Answer: Um … thank you? I think? I mean, I’ll take the compliment. Duh. I don’t want to look sick. Who would?
I put a lot of effort into not looking sick.
But, it is really, really hard to live with an invisible and disabling illness that no one can see. Because I “don’t look” sick, people don’t fully understand just how sick I am. Because I try to keep up appearances, certain expectations are placed upon me, and when I fail to meet those expectations, I am seen as unreliable or “less than” or whatever.
Also, paying me a compliment on my appearance is lovely and kind, (and always welcomed, *wink wink*) but if you inquire about my health, followed immediately by, “I mean, you look great!,” then I don’t really know how to respond. Do I elaborate and explain that, yes, I may look great to you today, but you should have seen me yesterday when I could barely get out of bed, had dark circles under my eyes, had trouble walking up and down the steps, had difficulty pouring my coffee or brushing my hair, and was hobbling around like an old woman, wearing pajamas all day.
Or, do I just accept the compliment, and change the subject, because — let’s face it — most people, honestly, would prefer to talk about where I got my blazer or my leggings, or where I got my hair done, rather than truly hear about my chronic illness.
And I get it. I’d actually usually prefer to talk about that stuff, too.
And your compliments do make me feel good. I work hard not to look sick.
Because nonetheless, I still AM sick. I’m an ambitious, over-achieving, creative glamazon fashionista trapped in a body that hates me and several illnesses that are always trying to take things away from me or rob me of a normal life. Sometimes — often — I do want you to focus on the “me” that doesn’t “look sick” or doesn’t portray a stereotypical “disabled” or “patient” image, because I want to be seen as more than the sick girl.
But other times, being told I don’t look sick seems to undermine my conditions. Depending on the delivery, how it’s worded, and who said it, “you don’t look sick” can either be a genuine, innocent, well-intended compliment, or, it can be a passive-aggressive remark: “well you don’t LOOK sick, so why don’t you go to the gym anymore?” “You don’t LOOK sick, so why did you quit working a full-time marketing job?” “You don’t LOOK sick, so why did you cancel our plans last night?” Or the worst: “She doesn’t really look that sick … she seems fine … so, who knows … she’s probably over-exaggerating or faking it.”
Here’s the thing, folks: how I look really has nothing to do with my health. I have a multitude of health problems, some more disabling and incapacitating than others. They’re a part of me, but they’re not all of me, and the symptoms of these conditions can lull and flare, and ebb and flow, all the time. They fluctuate in severity day-to-day, or even hour-to-hour. Some days are better than others, some weeks are better than others, some months are better than others, some years are better than others. And that will remain true regardless of how I look. There is not a proper way to “be” sick. They don’t give you a manual at the time of diagnosis and say “This is how you are to look. Section two covers how you are to act. Lastly, you’ll want to review the section on how to be, and how to make everyone around you less uncomfortable about your health problems.” So yes, I may have been at the doctor on a Friday and out with friends on a Saturday. I may have had to reschedule a meeting on Monday but by Wednesday, I’m feeling well enough to go on a bike ride. I may look cute one day, I may look like a zombie the next. I simply don’t know. So while I’m glad that I don’t look sick to the general public, I am. And it is NOT easy to live with incurable health issues that no one can see.
I guess, as a society, we should always consider the fact, also, that looks are not the only value a woman has. How a woman looks isn’t all she has to offer, and there are other things in her life of value that are worth inquiring about, and so appearance really needn’t be the first thing that is always addressed, even though that is a really common occurrence for females. Let’s be mindful that you can’t judge people based on appearances or even their resume or social calendar. Those things oftentimes bear no reflection on someone’s health and wellness, and frequently, those of us with chronic illness are fighting like hell to try to live some semblance of a thriving, fulfilling, productive, happy, healthy life, despite bodies that are constantly attacking us. And remember before judging others that not all disabilities are visible, and you certainly shouldn’t make assumptions about anyone’s health or level of physical ability, just like you shouldn’t make assumptions about anyone — especially based on looks alone.
A lot of us don’t “look” sick.