To the Teacher Who Said My Chronic Illnesses Were 'All in My Head'
It’s taken me a while to process this. Far too long. How you, a teacher I respected and loved learning from, could say the symptoms I experience from my two diagnosed neurological diseases (which required two brain surgeries before my 21st birthday) were exaggerated and “merely” caused by anxiety. How you could sit in your classroom as I got up to leave for yet another painful medical procedure and tell not only me but also your entire class that I was making it all up. How you smiled and almost laughed, encouraging my classmates to laugh, when stating that my six uncontrolled epileptic seizures a day were unreal, that the immense pain I deal with daily because of a genetic collagen disorder was fake.
You insisted that my illnesses were “all in my head,” even though they are neurological, not psychological, and have very real physical causes. Not that this should matter — my PTSD from surviving childhood abuse is just as real, just as important as my genetic diseases, and ought to be treated as such. Mental health issues are so stigmatized in our country that you thought you could discredit my reality by implying my health issues are psychological.
You weren’t the first person to tell me my symptoms were “all in my head” and you definitely were not the last. I will surely be accused of this again in the future. The majority of our society is uncomfortable discussing chronic health issues. We ask “how are you?” as a polite conversation filler only to be offended if the answer is anything but positive. We expect others to put on a positive face no matter the circumstance. We wonder why our loved ones are not better yet and stop asking when we realize the answer is not changing quickly enough, if it changes at all. As if we have forgotten the definition of chronic.
Because you see, teacher, I was not faking being ill. I was faking being well.
Even to this day, even after surviving two brain surgeries, I continue to pretend I am better than I am for the benefit of others. Because it makes even the most well-intentioned people uncomfortable to talk about those who are perpetually sick. Because we expect people to recover from a chronic illness in the time it takes to recover from a cold. Because I realize that when people look at me, they think I do not look sick. They think I am “too young.” My illnesses are invisible, so it is challenging to imagine what I am feeling and easier to pretend all disabilities are visible.
Let me let you in on a secret: my fellow spoonies and I don’t expect you to be able to imagine what we feel. In fact, we hope with all our hearts that you will never know what our realities are like. Because for you to understand what it is like for 23-year-old me to battle Chiari malformation, epilepsy, Ehlers-Danlos syndrome, polycystic ovarian syndrome and PTSD every day, you would have to feel my pain. And I love you too much to want that. I wouldn’t wish my situation on anyone, not even those who act only with hatred. I’m glad you do not understand my pain, but that doesn’t mean it is not real. Just because you don’t understand does not mean my symptoms are “somatic.”
I understand, dear teacher, that it was confusing and even frustrating when I had to miss class. I understand that you deal with many students year after year who for whatever reason choose to skip class, and I know this must be disheartening. But I adored your class, enjoyed each moment of lecture and every assignment, looked forward to absorbing your wisdom and appreciated the compassion you generally showed your students. I worked hard in every class and graduated with a high grade point average while having six seizures a day, when moving and even thinking caused immense pain and took tremendous effort.
Yes, some days are better than others, and I realize it is confusing to recognize I am sick when you see me continuing to do things. Yes, I still get up every day and do my best to accomplish my daily tasks, work full time, volunteer, exercise. Yes, I push through — I have been caregiving for my family since I was 7 years old and I have learned how to manage the pain because I can’t just sit and do nothing. I have responsibilities. I want to live my life and pursue the career and hobbies I love. I want to spend time with my niece and nephews.
Still, I pay physically for everything I do. There are times when the week has been so busy that my chronic illnesses flare and I have to go to the doctor. Or have a painful medical procedure. Or simply stay in bed to let my body rest. This does not make me lazy. And the fact that I am able to smile and carry on with the pain most days does not mean I am pretending to be sick on the more challenging days.
My chronic illnesses are real, even though you can’t see them. I find things to help me manage them, whether it be massage for my Ehlers-Danlos syndrome or cognitive-behavioral therapy for my PTSD. I am doing my best. My fellow spoonies are doing their best. We deserve love and compassion, to not be accused of pretending to be ill so we can get out of things. We miss participating and wish things were different but have learned we must listen to our bodies. My chronic illnesses are not “somatic” and I hope that being open about what I go through will teach everyone the importance of showing grace to each other because we never know what someone else is facing that we simply can’t see.
Getty image by Andrea Obzerova.