I’m just gonna go ahead and get this out. Hi, my name is Saidee and I have an invisible illness. Multiple illnesses, actually. Well, they are invisible to most, but they are very visible to me.
• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?
I see it in my purple feet, thanks to blood pooling in my legs. I see it in the weight I’ve gained due to exercise intolerance. I see it in my weekly schedule, high on doctor’s appointments and low on social engagements. I see it in the loss of a career I loved greatly. I see it in my daughter’s face when I tell her I can’t pick her up or carry her. What is invisible to many, is so clearly visible in my life. And being invisible can feel incredibly isolating.
An article on umass.edu states that, “It is estimated that 10% of people in the U.S. have a medical condition which could be considered a type of invisible disability.” It goes on to estimate that one in two Americans has some type of chronic medical condition. One in two! Half of the U.S. population is walking around with an “invisible” condition and, yet, most of us are walking around feeling completely alone.
An invisible illness, as you’ve probably guessed, is an illness that isn’t immediately visible to others. Such conditions include: depression, anxiety disorder, Ehlers-Danlos syndrome, fibromyalgia, postural orthostatic tachycardia syndrome, celiac disease, irritable bowel syndrome, and so many others that I could never possibly name them all. These conditions range from common to rare.
I happen to have multiple invisible illnesses which have become debilitating for me. When I am in my wheelchair or using my rollator, my illness becomes visible to others. I have run into many people who are quick to help me or accommodate my needs when I am using a medical device. I get looks of pity and am often talked down to, but that’s a subject for another post.
But when I’m out in public without my wheelchair or my Rollator, I am met with looks of criticism and judgement. I get eye-rolls that read, “God, what a drama queen,” if I’m out and exclaim to my boyfriend that I need to sit down so that I won’t pass out. I’ve had people laugh when they hear me out of breath after walking across a parking lot, yet, they don’t realize that I’m panting because my heart rate is getting dangerously high and I’m on the verge of passing out. I’ve heard several whispers and snickers because of my not-so-fashionable compression socks and leggings. I wonder if they would still be whispering and judging me if they knew that my compression wear is the only thing keeping my blood from pooling in my legs instead of circulating?
How is it that 50 percent of US citizens have some kind of chronic medical condition, and yet, our society immediately assumes that someone walking slowly is just being a pain in the ass rather than having a legitimate medical condition? Even with my wheelchair, if someone sees me stand up and get out of it, their looks go from pitying (not an enjoyable look either) to horrified and judgmental. There are several different reasons that someone might need a wheelchair. Being a paraplegic is only one of them.
Could it be that the reason people have a hard time believing in and understanding invisible illnesses is because they are so often kept hidden? Or is it that we feel we have to hide our illnesses away to make others feel comfortable? Often, as I explain my condition to people, I see their eyes gloss over and their faces contort into an expression that says, “Oh dear God, what do I do? This is so awkward.” They seem unsure of how to handle what I’m telling them. Are they supposed to pity me? Are they supposed to offer solutions? Are they supposed to tell me they’ll pray for me? Or that they’re sure that things will get better one day?
I have heard all of those reactions and more. I end up feeling trapped in this weird place of wondering if I should be honest and talk about what’s going on in my life or pretend that everything is OK so that the conversation doesn’t get weird. But then, I’m not really left with much to say. I don’t talk about my illnesses to get pity or attention. I talk about them because they are a pretty big part of my life right now. They inform most everything that I do. There isn’t a day that goes by where I don’t have to think about my illnesses. Leaving out my illnesses in everyday conversation feels like I’m being dishonest because, honestly, my illnesses are an everyday thing.
So, I choose to talk about my illnesses. Not because I want to make others uncomfortable, but because I want to make it more normal to talk about these things. I don’t want to be afraid to tell someone that I’m getting dizzy and need a break just because society says that I’m supposed to suffer in silence. I don’t want to shy away from telling people what I’m feeling, or being honest with myself, because I’m afraid of judgement. Because, the truth is, I know a secret that society doesn’t seem to know.
I know that my illnesses are a sign of strength, not a sign of weakness. No matter how bad things get, and sometimes they get really bad, I know that I will continue fighting. I will continue to try to find the best in each situation. I will continue to try to find new ways to combat symptoms. I will continue to try to be the best mother, girlfriend, daughter, teacher, etc., that I possibly can be – even if those roles look very different than how I hoped they would. And I will continue to fight for others with chronic illnesses, to erase the stigma that keeps us hidden away from the world. I will continue to be a warrior, just like every other person who is battling a chronic illness.
This is where I call on all of you to help. Let’s make the invisible visible. I’m calling on all Spoonies out there, whether you are disabled or not, and all Spoonie supporters to, “Show me your spoons!” If you are up to the challenge, then take a picture of yourself with a spoon (preferably hanging on your nose because…well, because it’s fun) and post it to social media. Tag it with #showmeyourspoons. Some other tags I’ve used are #endthestigma and #maketheinvisiblevisible. Feel free to share what chronic illness you are fighting, but it’s also OK if you aren’t ready to share that yet. Just sharing your spoon is enough. Let’s show the world just how many of us there are!
Follow this journey on Spoonie Warriors.
Thinkstock Image By: AlexRaths
Just a Spoonie girl chronically living in a Spoonie world! Check out my blog at spooniewarrior.com for more stories. I write about life with chronic illnesses, including: Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, PTSD, IBS, ADD, chronic pain, migraines, and much more. Follow me on Social Media for regular updates.
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