When Disability is Cloaked with Invisibility: Living Hidden in Plain Sight

Bubble girl. High maintenance. Monster. Entitled. Needy. Clingy. Confusing. Awful. “A lot,” and “too much.” All titles I’ve earned in life from family and former friends, from doctors, and those in the health department. I can’t express how crippling life has been. As someone who has had undiagnosed congenital Lyme disease for all my life, I know what it’s like to be misunderstood and even vilified. And then I ended up living in mold.

Now I have names to the illnesses that make me so different, but the world has pre-judged me and so many others like me at every turn. I spent the first few decades of my life a walking mystery. Doctors constantly confounded, and never reacting or feeling quite like any other person I met growing up. One thing it has shown me is the intolerance and instantaneous judgment and discrimination of the world that still exists. We have made great strides in relation to racial prejudice and the feminist movement. While those areas of understanding still have much room to grow in this world, we have a new frontier to breach — medical discrimination.

I want to say right here, right now, this ramble may touch briefly on covid, but it is not my desire to direct anyone’s mind regarding the safety or efficacy of vaccines in either direction. It is a smaller piece of a larger discussion that is bigger than a global pandemic. How can we as a society, claim to have improved so much and taken such great strides, when people who are different for reasons that the vast majority of the world cannot understand or relate to, are so viciously and destructively ignored, diminished, defined, and denigrated?

We cannot claim to have grown at all, if we cannot apply the overall lessons we have been learning as a society, in relation to things like racial prejudice and anti-feminist inequities to the overall scope of life. There are many minorities out there, and the disabled folks of the world are more empowered than others if you think we can do all that you do in excruciating pain, and make it seem as though we are not, so convincingly, what is your damage in life? It doesn’t mean we aren’t in hospital grade pain every day. It just means we’re insanely badass for vacuuming the house.

When you get right down to it, discrimination is rampant everywhere. How dare you judge someone’s level of pain? You cannot measure pain with any lab test. And insurance companies cover less and less by the day. The pandemic only heightened the tempers of the healthy. Instead of providing a lesson in empathy for those having lived housebound for years if not decades, it made people even more entitled and selfish than ever. Anything that limits their fun limits their freedom. Anyone who falls outside these lines of constant fun and connection is a detriment to society.

I have news for you. You don’t deserve to be free when you behave like such an animal towards your fellow man. The experience a person has inside their own body is theirs and theirs alone. Anything that is your DNA, is your authority, your territory, and your jurisdiction. Personally, for extremely complicated medical reasons, I cannot be vaccinated. However, I take this situation in the world seriously. I avoid public spaces that are too crowded, social distance, double-mask, and support my immune system out of respect for those I may come in contact with. As it is, I have little energy for much anyway, but I respect the right of everyone to health and safety, and as much as it depends on me, I will do my part to be hyper-vigilant for the comfort of others.

And those around me are all largely vaccinated. We don’t judge one another, and since they’ve been here in this journey for 3–4 years now with me and my husband, they’ve witnessed a lot of intense things that I do not show the world, as it crosses a boundary of vulnerability that is a privilege to earn access to. But as a result of this rare private access granted through my own consent and earned trust, they have no concerns for their own safety, as they know I treasure them as gold. They themselves even expressed the desire to be vaccinated to be able to be safe to be around us for OUR sake!

Mutual respect, a refusal to judge with finality until you truly understand every aspect of a person’s experience, and an ample dose of humility are necessary to temper the tempers of this selfish world, so completely blind to the severe discrimination and ostracism of a community of people even more overlooked and marginalized than anyone knows — the invisible illness warriors. We are all here. Hidden in plain sight. Around, but not often, mysterious, and hard to get to know — if ever.

We don’t park in the disability space, and we don’t qualify for benefits. We are viewed as different and a drain on society. And yet all we long for is a boring life of work, tv, gardening, house maintenance, trivia night, game night, and bed by 9pm. Maybe a vacation. The joy of being able to afford a house so you can complain when the dishwasher breaks and you need a new one. The simple pleasures of knowing if you can eat drink or sleep, or even have access to your own personality on any given day. No clue if you may encounter some trigger that rips away weekend plans, no idea if someday the people who love you now will eventually get tired of dealing with the limitations necessary to be endured to be in your life and love you.

We deserve a voice and a life just as much as those whose inequities in life are plainly visible, or have recognized support in government and the community. Meanwhile, here we are. Cloaked in our invisible illnesses, waiting for the world to truly wake up.