The Mighty Logo

When Others Automatically React With Pity to My Disability

The most helpful emails in health
Browse our free newsletters

There was a time I would have not known what to say to a person living with chronic illness. I was a high-powered business strategist, living my life on airplanes, traversing jetways in four-inch stilettos and giving keynote presentations across the country. I had no idea what it would be like to live a life with physical limitations. Then it happened to me. My life changed in a single moment when the tailgate of my SUV fell on my head in between business trips. Although the injury was classified as “mild” (because I didn’t pass out), it changed my life instantly.

I am no longer the high-powered business woman. Most people today don’t even know me as I was before the TBI, they only know who I am today – a woman living with dysautonomia, chronic migraines, adrenal insufficiency, post-concussive syndrome, hypopituitaryism and more…Interestingly though, I don’t think I have changed; no, I feel I am the same woman, just no longer wearing a mask and living with some new challenges.

In my former life, I was like most people – it felt awkward to be in the company of a person living with chronic illness. I mean, what do you say?! That’s why I try to have empathy toward those who fumble over their words in my life today, as I have been in their shoes. But I will be honest, there are times when I have a strong reaction – and that is especially true when it comes to pity.

I recall speaking with a female authority figure a few years ago about my disability accommodations. Although I am not required to disclose the details of my disability, it can be helpful to give context given the way I process complex information. As an example: I have synesthesia as a direct result of a traumatic brain injury six years ago, and I take notes in color. To the average person it might look like I was disengaged and doodling, when in reality I am using color to capture complex lines of paradoxical thinking via my right hemisphere.

I am an “acquired savant.” That means I suddenly developed artistic talent in the wake of a life-changing traumatic brain injury. I could not paint before the accident; after the TBI I was literally an insatiable artist. This is the “new normal” for me.

painting by an artist with synesthesia
“Rising Courage” – Original Art by Heather Thompson, Blue Phoenix Art

As I conveyed my story to the very professional looking woman, just as I have done many times before, she sternly looked at me and said, “Wow, there must be so much grief.” My first reaction was surprise, followed by anger. It took me a while to understand why her statement evoked such a big response inside of me. Upon reflection with my counselor (something I recommend for anyone adjusting to life with a disability), I realized I didn’t like having someone project their feelings onto me. This is especially true given that grief isn’t the emotion I associate with my healing journey. For me, my path is one filled with gratitude and grace, even when it has been messy and difficult.

Truthfully, I am happier than I have ever been in my entire life, even with the limitations imposed by living with disability. There is a strange kind of balance in my life today. On the one hand, I am living the life of my dreams – I live in the country, surrounded by old growth cedars, with a menagerie of animals (including goats) and my lovely 9-year-old daughter. At the same time, I live with my fair share of struggle – and even as I write this I am coping with physical pain of an unknown origin. In fact, I am on my way to the Mayo Clinic this week to attempt to get a diagnosis.

See, I love my life. Even with the flaws, and even as I take every courageous step toward greater healing, I embrace this moment as absolutely perfect exactly as it is. I no longer hold the belief that “I will be happy when…” No, I choose to be happy now.

As I look back on the conversation I mentioned earlier, I have a different awareness. People have assumptions about chronic illness. I have observed that they attempt to empathize from their own perspective, without any ability to grasp what life is like for those of us that have a physical disability. They try to imagine what it would be like – and then they experience the shock, horror and/or fear that comes with the recognition that life could change in an instant.

This is at the root of pity – it isn’t about me or my condition; rather, it is a person struggling to imagine what it would feel like to live in my shoes.

Isn’t it remarkable, then, to realize my life with chronic illness – most people’s worst nightmare – is filled with a depth of love and gratitude I can’t even begin to put into words? And so I paint it. I use the gift of synesthesia to express that which cannot be said in human language. I take notes in color. I embrace the ways I am different, because those are the gifts…and I try to be patient with my body because this is the vessel that carries me through life.

In my opinion, the most challenging aspect of living with a chronic illness is coping with the opinions of others. That is why I have placed authenticity at the core of my journey. The more I become willing to
authentically be who I am, regardless of what other people think of me, the more I cultivate my freedom and ultimately my happiness.

I am not going to ask people to stop pitying me. Instead, I am going to dare to live the life I have been given with my courageous vulnerability acting as a cornerstone of strength. Perhaps being open about this imperfectly wonderful life might show even one person that joy and pain can live side-by-side, and when it happens to them – because some kind of life-threatening condition will happen to all of us – it will be OK. Just as stated by one of my favorite authors Anthony De Mello, “Though everything is a mess, all is well.”

We want to hear your story. Become a Mighty contributor here.

Originally published: September 26, 2017
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home