My dad keeps telling people my hair is falling out.
I have an autoimmune disorder called Undifferentiated Connective Tissue Disease, which causes me chronic muscle spasms; constant pain; weakness that sometimes prevents me from walking, showering or even getting out of bed; migraines; vomiting; tremors; episodes of depersonalization/derealization; and telogen effluvium, but sure, yes, my hair is falling out.
That’s what finally took me from hypochondriac to sick after almost a decade, and it’s absolutely infuriating. I’m not alone in this experience — gaslighting in women’s health is incredibly common. It wasn’t just my dad either; it was my friends, my other family; even my doctors. Losing my hair took my UCTD from an imaginary frenemy to “life threatening chronic illness” because finally, it was something other people could see. Why else would a woman be bald if she wasn’t sick? There’s almost too much ableism and sexism to unpack here, but we’re going to dive into it anyway.
Related: Managing Lupus Symptoms: Hair Loss
The root of the problem (hair pun intended) — besides years of systemic inequity and prejudice against marginalized communities like disabled people and women — is that we often rely on our own experiences to internalize and evaluate information, particularly when it comes to disabled people. When something doesn’t align with our understanding, we reject it. Read: it’s really hard for people to pick up what you’re putting down when they don’t know how heavy it is.
The worst part of having an “invisible” illness, or a diagnosis no one knows exists is that it’s not invisible and it does exist. Others’ ability to perceive your disease does not determine the impact that it has on your daily life. If it bothers you, isn’t that enough?
The answer, I’ve found, is no — it’s not enough.
The truths we hold about our realities are not shaped in a void; our experiences are molded and influenced by societal expectations. For example, a commonly held societal idea is that a person who doesn’t work is sick or lazy. If you can’t see the sickness, then they must be lazy. If they insist they’re sick, why aren’t they getting better? We rely too much on our personal experiences to inform our perception of others.
We’ve been conditioned (that hair pun was not intended) not to trust each other.
If you don’t live with someone who has a chronic illness that leads to them not being able to clean their house, but you show up when the house is dirty, you have no experience with which to pit “dirty house” against than your own experience and the norm: this person must be dirty. We chronic illness sufferers know this is not the truth; our symptoms flare and make normal tasks, chores and obligations impossible.
And so, for some non disabled individuals, the symptoms of invisible diseases can look an awful lot like lack of regimen, discipline or even care.
If you’re as lucky as I am, most of your hair will fall out of your head directly from the root leaving you with weird stringy strands of shoulder blade length hair and a gnarly combover, and then you can do a jig in front of your friends and family while holding clumps of loose locks in your hands and saying, “HA! I told you!”
If you are not like me, your battle is a bit harder. You’ve probably spoken to friends, family and doctors ad nauseum; you may have inconclusive test results, untrackable symptoms and a general distaste for humanity at this point. You may even doubt yourself and ask questions like, “Am I really sick? If I am sick, am I as sick as I feel? Did I do this to myself?”
Read this twice: if it bothers you, it is a problem. Your experience is equally as valid as anyone else’s. The struggles you’re facing may take parts of your body, certainly much of your time and even your ability to live the life you lived before, but they cannot take your story. You’re not as invisible as your invisible illness may make you feel. It shouldn’t be your job to restructure the structure, to undo the stigma and disbelief. It shouldn’t. But, if the alternative is isolation and self-doubt, you owe it to yourself. Keep putting down your truth, and those of us who know will be here to help pick it up.
Sara Watkins (she/her) is an editor, author, UCTD-haver and editor-in-chief of Spoonie Press, which is devoted to publishing work by chronically ill, disabled and neurodivergent creators. She is the winner of the 2022 MASKS Literary Magazine Story Award. Recent publications include work in Wordgathering, Vast Chasm, and Bitchin’ Kitsch. Contact her at www.sarawatkins.net or @saranadebooks on Twitter and Instagram.