Imagine, for a moment, that you wake up one day and your skin has turned electric blue. You frantically wake up your partner/spouse/roommate/pet and cry “look at what’s happened to me! I’m blue!” and the person/animal you have awoken blinks, then ignores you. “You’re fine. I don’t see anything.” they tell you.
You call off work and go to the doctor and, upon arrival, the nurse asks you “what brings you in today?”.
“What do you mean? Can’t you see? I’m blue!” you reply. The nurse makes a note and nods sympathetically.
“Sometimes, that happens. The doctor will be in shortly.” They quit the room and you know they didn’t see your cerulean skin. They don’t believe you. The doctor comes in and reads from your chart for a moment, then considers you. Right away, the sigh gives them away.
“So, what seems to be the trouble?” the doctor asks coolly. You try to stay as calm as possible, but by now, you’re not just blue. Now your hair is producing an electric current, your hands and feet are highlighter green, and you can hear someone singing opera off-key. You tell the doctor, who looks you over, then goes back to their chart reading, never leaving their stool.
“That’s not what you told the nurse.” they say matter of factly. You try to explain that you were scared and didn’t really notice the other symptoms. The doctor shakes their head and sends you on your way, with a prescription that might help the blue fade a little if you’re lucky.
You’re frustrated, right? Yeah, me too.
That’s what each experience can look like when you’re dealing with invisible illnesses. You try your hardest to explain, but the message just doesn’t seem to come across to whoever you’re trying to tell. Sometimes, its someone giving you a dirty look when they see you take the elevator instead of the stairs. Sometimes, its the disappointment you hear when you cancel plans on a friend, again. Sometimes, its medical professionals turning you away outright or putting you through the ringer when you have to see someone that isn’t your own doctor.
The struggle to be seen and heard when managing invisible illnesses can be horrifically overwhelming. While some get lucky, others have it harder. I was able to find a doctor who genuinely listens to me and does everything she can to help me. I have a dear friend, however, who is still fighting to even be diagnosed with EDS, even though she displays all of the hallmark traits of the disease.
Then there’s stigma. Think of the feeling you get when you see someone who appears able-bodied on one of the motorized scooters in grocery stores or department stores. You get irritated, right? “Get off of that,” you think, “you obviously don’t need it.”.
I should be using those. I’m too afraid to use them and end up on the receiving end of that disapproval. I avoid using my cane in public unless I absolutely need it or I know I’m going somewhere “safe” because of one person who felt entitled to tell me off over it.
Thankfully, there are more and more resources and support groups popping up every day for those who live with invisible illnesses and the conversation is beginning to turn in a very positive way. Talking about these things isn’t so taboo anymore and compassion and acceptance are becoming, slowly, the normal response. I’m more often greeted with a “really? Me too!” than I ever thought I would be when I talk about some of my struggles and illnesses and every time a new lemon or spoonie comes forward, I feel a surge of kinship, that “me too” hitting soul deep and allowing me to forge bonds with people that make me stronger.
If you struggle with an invisible illness, be loud. Use your voice and your story to bring visibility to these hidden menaces in our lives. You never know who could be watching or listening.
If you don’t struggle with an invisible illness, be kind. Show compassion and strive to understand and listen and never offer judgement or derision. You never know who could be watching or listening.
Our illnesses might be invisible, but we’re still people.