I know that I haven’t written lately. Between planning a wedding and trying to meet the NaNoWriMo challenge, I haven’t had much time to focus on writing blog posts. However, recent conversations I’ve had, as well as the upcoming holiday season, have inspired me to write today.
I have seen multiple people in various support groups or on social media writing about friends and/or family members who tell them that they shouldn’t talk about their illnesses or disabilities so much. People have been accused of attention seeking, making things up, or various other strange excuses.
Because of this attitude, many people with disabilities and chronic illnesses won’t share anything about their daily life as long as it involves their disability or illness. They lock a large part of themselves away, afraid of sharing even important moments in case their inbox will once again be filled with “helpful” people telling them they look weak, pitiful, desperate, or whiny due to an innocent post.
If you follow me on social media (and you should!), then you know that I don’t hold back when it comes to my illnesses or life as a disabled woman. I share about my illnesses, how they affect my life, ableism I encounter, so on and so forth, regularly. I’m sure many people have several theories as to why I do this, but I wanted to take a minute to share with you all my side of the story about why I share so much about my illnesses.
You may have noticed this strange habit people have on social media: posting about their lives. Funny how that works, right? People share pictures of their kids, fur babies, themselves, and even the meals they eat. They share about what they watch on tv, meetings, work, activities, hobbies, vacations, special life events…you get the idea.
So, why does it seem strange for a person with chronic illnesses and/or disabilities to share about their life and experiences? My main job right now is my health. You go to meetings at work, I go to doctor’s appointments. You have a tough assignment due, I have a difficult medical test or procedure. You had a long commute, I had a long wait in the doctor’s office.
And yet, people who talk and share about their chronic illnesses are often accused of faking for attention or looking for pity. These accusations always anger and confuse me. I mean, for one, who on earth would fake being this sick for this long? I know, people will shout “what about Munchausen Syndrome?” because they don’t understand that there are actually incredibly few confirmed cases of that disorder. If anything, Munchausen by Proxy is more common than actually faking your own illness for a long period of time.
Most of us with chronic illnesses have lost so much to our illnesses. I lost a career I loved and worked hard to get. I’ve lost many friends simply because I can’t get out and socialize anymore. I lost income. I lost the security of being able to make plans. I lost my passions of dancing, singing, and acting. Why would someone give all of that up just for attention? Especially when that attention is most often negative as we are blamed for our illnesses, told we don’t try hard enough or don’t want to be well, called attention seekers, treated like children, pitied, and judged.
We aren’t sharing because we want your attention or pity. We’re sharing because it’s part of our lives. No, our illnesses don’t define us, but they certainly are part of us. We want understanding and acceptance, just like everyone else.
Having chronic illnesses can be isolating and lonely. I have met so many wonderful spoonies because of how outspoken I am about my illnesses. I have had friends who have been able to get a diagnosis they needed because of my posts about my symptoms. I’ve had multiple people message me saying that they never knew anyone else experienced what they experienced and finding out that someone else does makes them feel less alone in this world.
If you’ve never had unexplained symptoms, then you may not be able to comprehend how incredibly relieving and validating it is to find out that it’s not all in your head. That it has a name and a cause. And that others go through it as well.
Ehlers Danlos Syndrome is a genetic condition I was born with, but I wasn’t diagnosed until I was 30. I spent most of my life questioning why I was always getting sick and injured. Wondering if I really was just making it all up, or just wasn’t as tough as everyone else. I doubted all of my own experiences and feelings, a habit that still hasn’t fully worn off as I often wait until symptoms get severe before talking to my doctor about them, just in case it’s really all in my head and will go away if I stop thinking about it. Spoiler alert: they never do.
That amount of self-doubt gnaws at you. It shapes everything you do. You end up doing more damage to your body as you push yourself to do things everyone else is able to do because you don’t understand why your body works differently. Discovering why your body is the way it is, is an incredibly relieving feeling, but knowing others go through the same exact thing is even more amazing. But, how can others find you if your not allowed to speak up and share what you’re going through? They can’t!
3. To Normalize Disabilities and Chronic Illnesses
When someone says that talking about my illnesses and/or disabilities is attention seeking or that it’s somehow wrong to talk about, what I hear is that they think I should be embarrassed or ashamed of my illnesses and disabilities. I hear that they think these things should be kept a secret because they are abnormal or somehow less worthy of sharing than a photo of their meal.
Let’s go ahead and get one thing clear, disabilities and chronic illnesses are not sources of shame or embarrassment. Does my life look different than that of an able bodied healthy person? Absolutely. Does that mean it’s any less worth living? Absolutely not.
Disabilities and illnesses have long histories of being kept out of public view and treated like a dirty little secret. Children and adults were put in institutions with horrible conditions, which few did anything about because as long as they didn’t have to look at them, then they were ok. Before the ADA came along, disabled people could (and would) be kicked out of public places for “making others uncomfortable.”
Disabled people are still often pushed to the sidelines and ignored. We very rarely get any representation in entertainment, and when we do, it’s usually as a villain of some kind. Even when the character isn’t a villain, the role is usually played by an able bodied person, which again makes us seem like mythical creatures that are so rare that they couldn’t find a single one of us in all of Hollywood to play the role.
One of the most harmful effects of this lack of representation is summarized fairly well by the saying “out of sight, out of mind.” When people think that disabilities are incredibly rare, they are more likely to park in the disabled parking without a placard, use the disabled toilet, or believe that accessibility isn’t an issue because they’ve never seen a disabled person trying to get in to a place. This leads to people not really caring about the rights of disabled people, as we’ve seen in politics lately. I barely heard anyone who wasn’t disabled talking about the attempts to roll back the ADA, which protects the Civil Rights of disabled people. From the few that did, I heard things like “why should I have to make my business accessible when I’ve never once had a disabled person come in?” or similarly ill-informed ableist statements.
It’s infuriating when people tell you not to talk about your disability because it makes them uncomfortable, yet, when discussing the rights of disabled people they shout, “I’ve never had a disabled person here. If it bothers them, why wouldn’t they speak up?” It’s a classic manipulation seen in all kinds of oppression. Force the oppressed into silence, then claim that they must be ok with the oppression because they aren’t speaking up.
Well, anyone who knows me knows that staying silent isn’t exactly my thing. I refuse to play into the ableism that tells me my life isn’t good enough or valuable just because I am not able bodied. I refuse to hide away from view just because my existence makes others feel uncomfortable. I refuse to give into the notion that my life isn’t worth sharing or being proud of. I refuse to give in.
So, I will keep posting. I will keep sharing. I will keep talking about my disabilities and my illnesses. I will keep living my life as a proud disabled woman, and anyone who feels uncomfortable or embarrassed by it can kindly see their way out of my life. If you are receiving negative comments or feedback due to posting about your life with chronic illnesses and/or disabilities, then I encourage you to keep posting anyway. Block, unfriend, unfollow, or whatever, anyone who tries to tell you that your life isn’t worth sharing or is something to be ashamed of. No one needs that kind of negativity in their life.
If you are someone who rolls their eyes at people’s posts about their illnesses or assumes they are just attention seeking, please re-read this article and reconsider your position. You’re not helping anyone.
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