How being diagnosed with a chronic illness changed me as an educator

In July 2013, my life was turned upside down. I had an awful bout of vertigo when hanging out with a dear friend while our kids were in preschool. I happened to have a doctor’s appointment the next day and explained to them what had happened. Not concerned, the doctor ordered an MRI thinking I had an issue within my inner ear that could be quickly resolved. When the results of the MRI came back, the discussion was a brain tumor in a place that could not be easily operated on. I was blindsided. I had a 2-year-old and was preparing to start my 11th year teaching.

When I look back at the writing I did, I am in awe of myself. (all italics are from the blog I kept during my diagnosis and treatments)

October 27, 2013: I was diagnosed with a brain tumor late this summer. The entire diagnosis process was incredibly stressful, full of MRIs and incorrect diagnoses. I’ve gone through the Kübler-Ross stages of grief, including an extreme bout of anger and depression, which still clouds some of my days. At this point, I’m in the acceptance stage. However, November 15th brings another appointment with my neurologist and the next steps, which may include a biopsy. The thought of them removing a piece of my skull makes me sick.

Because I still worked full-time, I went through a YOLO year. I had as much fun with my students as I could while still teaching them. I stopped letting little things bother me. Below is the reason why:

I have many fears going into this life journey, the biggest being death. And it’s not necessarily that I’m afraid to die. I’m afraid to die at a time when my daughter would be too young to remember who I was. Every time we are being silly or cuddly, I savor it because, in the back of my mind, I worry that she won’t remember how much I love her. I’m sure no one in my inner circle would let her forget me; however, the thought of not being at her first high school dance or even at her wedding shoots me with a feeling that is inconsolable. And it pisses me off.

On November 13, I learned that it perhaps was not a tumor (thanks to misdiagnosis), but we still didn’t know what it was. I had a spinal tap done and refused the rest of the testing. It seemed unnecessary and stressful, and at that time, they considered a diagnosis of MS and a spinal tap would be the biggest help. I hate spinal taps. I mean, no one loves them, but they are awful.

On December 13, 2013, I was diagnosed with Relapse Remitting Multiple Sclerosis.

Well, after some research, my body is essentially attacking itself. It’s a disease of the central nervous system, including the brain and spinal cord. Cells there are covered with a myelin sheath. My CNS has patches of inflammation, and the myelin sheaths begin to deteriorate. The nerves underneath the myelin start to be destroyed because they do not have the myelin to protect them. Therefore, there is miscommunication within the body, thus causing symptoms of MS.

My immune system turns on itself and attacks the nerves. This causes demyelinated areas that appear on an MRI as white patches. This explains the “tumor” diagnoses at the beginning of this. Those were actually areas of plague caused by damage and scar tissue.

This was legit the wildest 6 months of my life. And it changed me so much, especially in how I interacted with my job and students. And yes, I still worked because the thought of sitting around and waiting was too much. I needed a way to keep up a “normal” life.

Ways being diagnosed changed me as an educator.

You have no idea what is happening with other people, despite their outward appearance, and you are not entitled to know.

Because I have an invisible illness, you can’t tell what is going on in my brain and nervous system. I talk about it with people I trust, but I don’t divulge it to just anyone. Students, coworkers, and families are all struggling with something. Treating everyone with empathy and respect is the best way to handle this. This does not mean tolerating disrespect, but often handling it with firm empathy is better in the long run for you.

Boundaries are important

I am a HUGE proponent of taking days when you need them because, for me, if I don’t, my body takes the days loudly. It’s also never anyone’s business why people are out. I stopped asking my kids why they were out but let them know I was there to help them get caught up on what they missed. Understanding that the teachers in my department were better when they cared for themselves or their families changed how I viewed absences. I told them to take the days, and we could deal with sub shortages. I understood they’d take more time if they “toughed” their way through it, and it was not good for anyone. Again, it was no one’s business, and if I was asked, I’d ask the person why they needed to know. I wasn’t perfect in this, especially on days when I wasn’t at my best, but I feel like this made me a bit better and more of a leader than a manager.

People are well-meaning but sometimes say some really hurtful things.

Here are some things I respond to in my head and what I respond to out loud. (Sometimes what I say in my head comes out of my mouth)

“But you don’t look sick.”——> And you don’t look incompetent —–> I’m curious, what does sick look like?
“I get fatigued too” ——> Congrats ——> (mainly to this, I just respond “ok” because I’m not looking to discuss further.)
“Have you tried…” ——–> For all of humanity’s sake, stop with the unsolicited advice? It assumes that the person hasn’t spent much time, effort, and emotional energy researching the best way to take care of themself.
And my all-time favorite: “Must be nice to be able to park wherever you want”—-> Well, having MS is a big bag of tricks, so being able to have accommodations that allow me to take part in society is helpful, so yes, it is nice to be accommodated.

For a while, it really triggered me. Now, I realize people don’t know what to say or do. This is why I don’t share a lot with others. If I have the energy, I try to be more compassionate, but I often feel it’s not my responsibility to educate others. If I don’t have the energy, I sometimes don’t respond or simply say “ok” and move on. This helped me also relate to my students. When they shared things with me, I often replied, “Please let me know how I can help you.” I’d have options for them to choose from, and one of the options was nothing. Even the thought of figuring out what people can do for me is a task that is too much for me to bear.