If you have RA or a similar chronic illness, such as fibromyalgia, lupus, Crohn’s disease, diabetes, and the list goes on and on — you’ve probably heard the term “invisible illness” thrown about more than once. I’m happy to say that my RA is invisible, physically, for the most part. You can’t really tell that I have a painful chronic disease unless you look really close and catch me limping a bit sometimes, notice my puffy right ankle, or see the scars on my wrist from a synovectomy surgery years ago. But some people aren’t so lucky and they’re forced to deal with the physical and emotional stresses of being out in the world with disfigured hands, steroid-induced moon-shaped faces, surgery scars, joint deformities, braces, walkers, canes and even wheelchairs. Thankfully with advancements in medicine and more effective RA treatments becoming available, patients are better able to get their disease under control and avoid physical damage and deformities.
So that’s great news, right? Yes! But at the same time it makes it more challenging for everyone in the “outside world” or “the able bodies” (as my friend Mara calls people who don’t have RA or chronic pain) to understand that you still have a painful disease. How many times have you heard people tell you that “you don’t look that sick” or “you look normal?” Or maybe they don’t specifically say those words but their actions and perhaps other, equally offensive comments, let you know that they really have no understanding of what you go through living with pain every day. It must be nice to not work full-time. What do you DO all day? But of course your family and close friends wouldn’t fall into the same category of these misinformed, misunderstood, judgmental and sometimes insensitive people who make up the general public, right? Wrong. The people who are closest to you often have the least clue of what’s really going on, and what it’s like to live with RA. And they can be some of your harshest critics.
I’m not working a “normal” full-time job right now, which really bugs a lot of people — especially my family members. I’ve recently been substitute teaching as a special education para at different elementary and high schools while trying to supplement my hours and income with freelance writing and photography jobs when I can handle it. Despite this work (which is not the typical office job with benefits), I often get the feeling that many family members and friends think I’m just being lazy, unmotivated, and that I don’t care that I’m not a fully contributing member of society (whatever that’s supposed to mean). I have worked many different traditional office jobs in the past, but usually temp jobs, because I physically can handle working that schedule for only so long before my body gives out and I need to rest. Jobs that have more flexible hours and flexibility in general just work a lot better for me.
To a healthy able-bodied person, this probably sounds like I am lazy and I just don’t want to work. That’s hardly the truth. I want more than anything to be able to live and work like other people do, as a productive and independent person. The reality is that I have significant physical pain on a daily basis; I have not had a pain-free day since 1997. That can make working a bit tough sometimes, never mind the other symptoms that often accompany RA: extreme fatigue, anxiety, depression, headaches, stomach issues, etc. I’m not lazy. I just don’t feel well 90-99% of the time.
Dealing with these “invisible illness” issues with my family and some friends has been frustrating over the years, and it’s something that I constantly struggle with — feeling guilty and like I’m not doing as much as I should or could be doing in life. My family’s expectations and sometimes lack of understanding isn’t what prompted me to write this post today, though. It was a rather shocking conversation I had with a good friend who accused me of using my chronic pain as an excuse.
The conversation I had with her left me deeply depressed, angry, and in tears. It was the first time anybody has said those words to me, those accusations. Although I’m guessing that plenty of people have thought them or have said them behind my back over the years. And I kind of see where they’re coming from. To some, I probably look like I’m a lazy slacker, coasting through life, letting my parents help me out with my health insurance and other financial burdens. But the truth is that I hate it that I can’t afford my health care on my own at this point in time. And I spend a lot of time worrying and beating myself up about it already, so I don’t really need anybody else contributing to my own self-loathing. I doesn’t help. Believe me, I have enough anxieties and say enough harsh things to myself, feeling guilty that I’m not doing enough. That I’m not working enough or trying hard enough, or living a better, more productive life. I am my own worst critic.
Life is a difficult, confusing, messy struggle for everyone. And it is especially so when you live every day with some degree of pain — sometimes manageable, and sometimes unbearable. In no way do I ever want to use my RA as an excuse in life. Nor do I want pity from others. The thought of that sickens me. And the thought that family or friends would think that I use my RA as an excuse, despite that I know better and I know the truth of what I’m dealing with, is also hard to take. But on the flip side, this makes me grateful and value the people in my life who are understanding and kind and truly supportive. And it makes me want to reach out and be empathetic to others who might be dealing with similar things. Everyone is struggling with something in life and I think we all just need to be a little bit nicer to each other.
My friend Mara, who also has RA, was supportive when I told her about what happened with my friend. I’m so thankful that she understands exactly this dilemma or “Catch-22” we face having an invisible illness like RA.
“It’s this double-edged sword where we have to come across as being okay, even when we are seriously suffering, just to be able to function in an ableist society,” Mara said. “But then if we actually abide by what our bodies want we are called lazy. We have to “fake it to make it” in a very real sense.”
As of now, I still haven’t spoken with the friend who accused me of using my chronic pain as an excuse. I honestly think that I deserve some sort of an apology from her, but in her stubborn mind she thinks she’s absolutely right in the comments she said to me and she wasn’t willing to try to understand anything I was communicating to her. I don’t think I’m a perfect person or have the right views or opinions by any means. I guess I’m not sure what to do right now. How do you try to explain what it’s really like living with a disease like RA? How do you make people understand, even after you’ve already told them about it? That seems to be the main challenge when living with an invisible illness.