An Invisibility Cloak of Shame

I think we’ve all, at some point in time, thought about how cool it would be to be invisible. I know as a kid I used to imagine having that super power. I was a huge dork in grade school: frizzy hair, thick glasses, played the violin… I always felt like I stuck out like a sore thumb. Looking back, probably very few people noticed me the way I felt like they did. But I remember thinking how wonderful it would be to be able to disappear from time to time.

Invisibility means anonymity. It means the ability to do things without fear of judgement or discovery. It means a free pass to observe and act in ways we might not otherwise be able to. Think of the way that invisibility is portrayed in popular culture: those who are invisible can spy on others or sneak into places they otherwise wouldn’t be able to. It’s fun and a little dangerous.

But there’s another side of invisibility that is both dark and isolating. It’s a side that many Spoonies, myself included, know all too well. When you suffer in silence, the pain and other symptoms of your illness hidden from everyone around you, invisibility feels like a curse.

Like many people with Fibromyalgia, it took years to get a real diagnosis. I dealt with pain, depression, and a myriad of other symptoms separately, not knowing that the real culprit behind all of them was Fibromyalgia. I fell into the trap that a lot of women fall into: the medical field doesn’t like to believe women in pain. We’re told to lose weight and that will solve all of our issues. When we do lose weight, we’re told we’re faking. Or exaggerating. It takes years of searching for a doctor who will take us seriously. And even then, it’s often very difficult to get that Fibromyalgia diagnosis. Very little is known about Fibro, there is no cure, and it is invisible. All of those factors make the medical field very resistant to give that diagnosis. Doctors like to heal. And there is no real healing when it comes to chronic illness. There’s no great success, only coming to terms with it and managing what you can.

That type of invisibility is all too common. Many people with dangerous illnesses have died waiting for doctors to take them seriously. Fibro doesn’t kill, but there are hundreds of illnesses that can and do kill people while doctors wait for them to “lose a little weight” before they do any tests. This type of invisibility is literally killing people, women and people of color more than others. These are serious issues that need to be addressed. But the invisibility trap doesn’t stop with a diagnosis.

When I got the diagnosis, after years of waiting and not knowing, it felt like a relief. It has a name. I assumed that, now that I had a name to put with my all of my symptoms, people would believe me. That doctors would believe me. That friends and family would show compassion. Sadly, that’s an over-simplification and not always the case.

Fibro warriors and other Spoonies who have illnesses that leave no trace talk about having “invisible illnesses.” What we mean is that we could be in the worst pain of our life, with gut-wrenching aches and sharp, stabbing pain all over our body, and you wouldn’t see a trace on our body. There aren’t any bruises to point to, no swollen, red joints to massage. There’s not a single physical sign that shows the world, “ah, yes… there’s a reason she’s in pain.”

We live in a world that requires proof. And in many cases, looking for proof of something is important and justified. But that mindset leaves those of us with invisible illnesses trying desperately to prove to those around us that our symptoms are real. We wear our invisibility like a cloak of shame. On one hand, we want to show that we are strong and capable. But on the other, we want desperately for those around us to believe us that what we experience on a daily basis is very, very real.

I’ve been told on a number of occasions that the pain I experience on a daily basis is all in my head. And that very well may be the case. My own brain might be the cause of this gnawing pain that disrupts so much of my life. But that doesn’t make it any less real or debilitating. And the fact that it is constant and unyielding doesn’t make it easier to deal with. You don’t “get used to” living in a body that is never at peace. The pain can be tolerable and it can be intolerable. But is always with you. And it always affects you.

There’s a lot to unpack when it comes to living with and accepting the invisibility of my condition. There’s my own desire to appear strong in the face of adversity. There’s my resistance to asking for help. And there is also this desperate desire to feel seen and heard. Every time someone says “you can’t be in pain all the time,” it feels like a little blow. When I open up enough to tell someone that yes, this pain is constant and unrelenting, it takes a lot of courage and trust. And to have those symptoms diminished feels a little like a betrayal. I understand that it’s because people don’t want to believe someone they care for could be in that much pain all the time. I understand it is their own coping mechanisms. But it still feels shitty all the same.

If you’re out there wearing your own invisibility cloak, give yourself permission to release the shame of it. Own your pain. Own your symptoms. Own the strength it takes to face each day, knowing that the pain will never go away. And don’t let anyone tell you that your experience isn’t valid because they can’t see it. I see you, and you are one glorious warrior. Stand strong. I believe in you.