Sometimes, we are our own worst enemy. Maybe not to ourselves as individuals, but to the collective “us” that is all people with chronic illnesses, chronic pain, cognitive impairments, and/or mental health conditions.
There are things we do that make it harder for everyone. So, with a heart full of tough love for you and for myself, here are the 10 things we just need to stop.
1. Getting Cured
This is a bold article, so I thought I’d make a bold start! OK, so I’m actually not telling you to stay sick. If there’s a cure for you, go get it! Right now! Why are you still reading this??
I sincerely wish a cure for everyone, and if your condition has resolved, that is definitely a great thing. Just please be mindful as you announce it to the world. It’s problematic when you say, “I thought I had ________, but really all I needed to do was ________, and I’m all better now.”
This is an immediate slap to the credibility of anyone who truly does have the condition you thought you had, and it get others thinking we just need to do that thing you did, and we’ll be fine, too. But that’s not the case. We’re not fine, and probably we’re not going to be.
It also takes away from people whose conditions may be in remission. During these good runs, we may seem cured, but we still live with the constant worry of when our symptoms will return as we walk on the eggshells of trigger avoidance.
2. Projecting Our Own Diagnoses
It’s not that we become our diagnoses. But they are our constant travel companions. They’re always there, sometimes in the passenger seat (probably talking way too much), and sometimes they take over and drive. We become intimate with our diagnoses, knowing them inside and out. We get to where we own them, our own personal piles of crap.
Then, when we are talking to someone else who may have some similar symptoms, it’s super easy for our minds to turn to that thing we know best, to our own unwanted companion. Like when someone with Lyme disease tells an undiagnosed friend that what they have must be Lyme too. Or if I’m reading someone’s social media post about their sister’s struggles, and the first thing I think is that she must have fibromyalgia, like me.
If someone already has a diagnosis, it’s not our place to question or change it, no more than it’s the place of someone who is well. We don’t get special privileges to pretend we’re professional at something we’re not just because we happen to be sick. Yes, we are professionals at ourselves, we own our diagnoses, but we don’t own the disease itself.
If someone doesn’t have a diagnosis, an important part of being supportive is remaining open minded on their difficult journey. Be a co-explorer rather than trying to steer them down your own narrow path.
3. Projecting Our Own Symptoms
We need to always remember, what whatever it is we have, that which goes by the same name is different for everyone. If we affirm that a condition comes with certain symptoms and doesn’t come with others, we can be hurting the credibility of others and denying their truth.
With my fibromyalgia, I don’t often experience the intensity of pain that others with fibromyalgia have. I made sure I communicate this. If I’m telling an able-bodied person, “My pain isn’t that bad,” I make sure I include, “but for others with fibro, it’s really horrible.”
With my osteoarthritis and degenerative disc disease, I’ve experienced harmful comments from others. People I’ve encountered who have similar spine or pain diagnoses have accused me of being weak, lazy, or exaggerating, and even gotten angry at me for what I wasn’t able to do, all not considering that same diagnosis doesn’t mean same experience.
4. Pressuring Our Own Coping Methods
These conditions are different for all of us. (I’m starting to sound like a broken record, aren’t I?) Therefore, a coping technique, or a treatment, or a diet that helps you may not necessarily help someone else with your same diagnosis. I mean, if you’ve found something that works, please, by all means, share. That’s one of the great advantages of community.
Where it becomes problematic is when we insist it’ll work (see No. 1). When we hype up too much hope. When we go from suggesting to pressuring, to nagging. Sometimes it can be taken as far as being judgmental when someone isn’t doing things your way.
Also, what you’re suggesting might not be within our means or comfort level, and that can be a trigger. I can fall into a black hole of emotional doom, feeling like a failure at life (mental health symptoms of fibro are rough, dude) when someone tells me to try something I can’t afford or don’t live near, or whatever.
So yeah, don’t do any of that.
I did write a separate article with tips on how to offer your ideas. Check out 5 Ground Rules for Offering Help to People with Hidden Disabilities.
Look, it’s not a competition. I have a thing. You have a thing. Your thing might be crappier than my thing today. But please, let me have my moment to express the terribleness of my thing. I’m looking for a friendly ear, my safe space where I can openly talk. And yes, I want to be heard. Immediately chiming in with how your thing is worse, or even just the nonchalant, “me too,” doesn’t allow me to be heard. It pretty much either shuts down my truth that I’m trying to share, or fires the starting pistol of victim Olympics.
We shouldn’t be competing with each other. Because no one’s winning anyway. Let’s just all take turns and share like we learned in elementary school.
Also, I’m sorry your crappy thing is crappier than mine today. That really sucks, and it’s totally no fair. I love you and I hope you feel better soon.
I am a huge advocate of talking about what we’re living with. It’s literally my job. But we need to tell the truth. Credibility is hard enough for us as it is, and while I think lying is terrible in any situation, I think it’s especially damaging to an entire community when we lie in the context of our disabilities.
Please don’t claim a diagnosis you don’t have, please don’t misrepresent what someone with your condition can or can’t do.
I understand sometimes we tell our little white lies because we’d rather say “I have other plans,” than, “My IBS is sooooo out of control today I can’t leave the house.” That’s way different than what I’m talking about. Just, you know, use your better judgment of right and wrong.
As far as the little white lies that I just mentioned? Well, they’re kind of harmful, too. They can be harmful to you, yourself. I wrote about that a month ago: What “Passing” Means to a Disabled Person.
7. Denying Diagnoses
Back with that we’re all different thing. Please, please, please, don’t tell someone they don’t have a certain condition. Unless you’re a professional and that’s your actual job. Don’t tell their friends or family you don’t think they have the condition. Even professionals can’t do that (unless consent is signed for). Don’t even say things like, “She says she has bipolar disorder.” You might as well just add on, “…but I don’t believe her and you shouldn’t either.”
8. Denying Discrimination
When someone says discrimination doesn’t exist, or a certain event of discrimination never happened, it’s super harmful. It’s exponentially more harmful when it’s someone from within the same marginalized group as the person who experienced the discrimination.
I’ll go back to my roots as a comedian to explain. When a man says that sexism (against women) in show business doesn’t happen, sure, his comment has a certain influence. But when a woman says it, she can be given “token” status and be seen as speaking for all female comedians and her statement moves, in the minds of outsiders, from opinion to truth.
The real truth is, sexism is rampant in show business. She just may have never experienced it firsthand, so you can’t let her speak for everyone’s experiences because then she’ll give everyone a free pass to not believe those of us who live it.
Likewise, if you’ve never been discriminated against as a disabled person, that doesn’t mean it’s not happening to others. It is happening. Please don’t say it isn’t, because when you do, you empower our deniers to oppose things like, oh … the Americans with Disabilities Act, or Section 504, or individualized education programs in school, or heck, even ramps.
In my heart, I think this is probably a very rare thing in our community, to deny our own struggles, but I didn’t want to leave it out.
9. Abusing Privilege
Again, you’ve probably never even thought of doing this, but I can’t omit it from this list. I, actually, have thought about doing this, and I’m welcome in my own house to live with myself because I don’t give in.
There is such a thing as privilege for people with disabilities. You’re like, Wait, what?? Let me explain (and stay with me to the end, here).
I remember getting caught up in it in this privilege one day when I was at an amusement park with a friend who uses a wheelchair, and we didn’t have to wait in line to get on the rides. Then when we had to wait in a food line, I got annoyed. In my mind, I was like, but we don’t wait in lines. Then I had to check my (guiltily appropriated) privilege.
Mind you, it is not a privilege at all to go to an amusement park as a wheelchair user, because for as many rides as we boarded without waiting in lines, there were rides we didn’t go on at all because the engineers and lawyers said my friend wasn’t allowed. (There’s much more to this story, but it’s his to tell, not mine.)
I tell you this as my best way to explain privilege for people with disabilities. When we get used to certain appropriate accommodations, we can sometimes expect to have accommodations where they’re not warranted.
Here are my two.
The first is one other people want for me, but I just won’t do because see No. 6. That’s using my condition to have my pet deemed a therapy animal or a service animal so I can take her everywhere with me or at least avoid pet fees at hotels. She’s not a service animal, and she never will be. And I don’t need one.
My second is a little more difficult to resist. That’s my handicap parking placard. I’ve wanted one for years because of the parking difficulties and long walks in inclement weather at my speaking gigs. (You can see the impact for real in my wee movie where I hike length of Johns Hopkins University … the time I didn’t get lost: Documinitary: Visit to JHU to Speak on Hidden Disabilities.)
I finally got the placard after the recent spell of difficulty with my back, and now that I have one, I have to consciously resist the temptation to use it anywhere and everywhere every day even when most days, I can walk pretty well! So I’m resisting, and I allow myself in my own house.
Because when we do things like pretending our pets are service animals when they’re not, or using the handicap spots when we don’t need to, we make it more difficult for the people who do need these accommodations to have the credibility and access that they’re due.
10. Perpetuating Stigma
I’ve already mentioned above some ways that we can contribute to the stigma and illness shaming of people with disabilities. But there are a couple more worth mention.
I so strongly encourage you to talk about your experience. When we keep silent, it perpetuates the expectation that we all just keep our crap to ourselves, and that feeds the stigma around talking about it.
If you’re uncomfortable talking about it, I understand. You can still welcome others to talk about it, and newsflash, you’re doing it right now by reading my words! (Yay! Thanks!)
I hope you’re not ashamed of your condition. It’s not your fault. Well, maybe it is. I mean, my fibromyalgia is my fault because I triggered it by working three jobs. But I’m not the person I was when I caused my condition, and I bet you’re not either. Forgive that past you and love yourself like you deserve. Your condition is nothing to be ashamed of, so don’t express shame about it. That keeps the shame alive in everyone else’s world, too.
I read recently that people treat us the way we teach them to treat us. If we just love ourselves, as individuals and as a community, we can teach everyone else how to love us, too.