Dynamic/Invisible Disability

Advocacy, Connect IV Legal Services, General 4 Minutes

I’ve written a lot about labels and fitting into groups of people or feeling a part of a group of people. I think that means I think about it a lot. Bottom line, as I’ve said over and over, belonging and feeling accepted is fundamental and words/labels really do matter, especially when you are a person who doesn’t fit neatly into a category.

Who fits neatly into a category?

Anyway, I digress but the obvious answer is NO, no person fits neatly into one category unless they create that category specifically for themselves.

In 2017, after I had lived with MBC for 90 days, I qualified for private disability income under an insurance policy that we’d purchased when I was still young and healthy. In 2018, after I had lived with MBC for five (5) months, I qualified for Social Security Disability Insurance (SSDI) income because of all the funds I’d paid into Social Security during the time I’d worked (consistently from age 16 to 38, when I was diagnosed).

I qualified for the funds and had to fight for some of the benefits under my policy but the label “disability” felt weird to me then and it still does now.

When my palliative doctor helped me to apply for a handicapped parking tag because of how much I struggled walking quickly and how tiring it was for me to keep control over my active boys in a busy parking lot, I eagerly agreed and jumped through all of the hoops to get it. The look on the lady’s face who helped process my application was clearly skeptical since I look pretty “healthy” usually on the outside. When she kept looking at me and then looking at my application, I got a little upset (ok, a lot upset) and asked her if she wanted to see the scars on my body from my treatment or perhaps the note from the doctor that clearly outlined that I’m terminal. She quickly finished her processing and didn’t look at me so skeptically after that.

As I read books and articles trying to come to terms with this new label, I realized that once again, I don’t fit neatly into the “disabled” category — shocker, since I’ve never really fit neatly into any categories unless said category is very very specific. The good thing was that as I read and learned, I discovered that there were other categories that better describe the limitations and challenges that I face every day.

The first term I discovered was “invisible disability.” This one is pretty self explanatory, I think, but the formal definition I found is: “In simple terms, an invisible disability is a physical, mental or neurological condition that is not visible from the outside, yet can limit or challenge a person’s movements, senses, or activities. Unfortunately, the very fact that these symptoms are invisible can lead to misunderstandings,  false perceptions, and judgments.” This article describes this concept very well and the website is a good resource as well. For those of us living with cancer, especially a metastatic cancer, most of our side effects are not visible on the outside, but those same side effects affect every day of our lives in many ways.

And so I made myself a T-shirt that literally says … “Ask me about Metastatic Breast Cancer” and I try to wear it whenever I ask for a wheelchair escort (like at the airport when we could fly) or at the zoo or any place that would require consistent walking. I don’t need to use a walker or cane or crutches consistently any longer, but I often feel as if I should. My bone mets cause me pain in various areas and the surgical changes from the rods inside both femurs, well, I feel ALL weather/pressure changes as pain. No one would know these things from the outside and I don’t complain as I have a significantly high pain threshold and I have a complicated medication routine that keeps me ahead of the pain as much as possible.

The next term I discovered was “dynamic disability.” This one doesn’t have a handy definition or webpage that I can reference, but it is also somewhat self-explanatory in that a disability (something that affects functioning) is dynamic (changing) from day to day (or minute by minute at times). This is especially true for me when it comes to energy and is why I try to share the spoon theory with anyone who is listening. To read more about the spoon theory, you can read this article. Basically, the idea is that we each get up in the morning with a specific number of spoons that represent energy. For someone who is healthy, they may have unlimited spoons or a lot, for those of us with an invisible disability that saps our energy, we have limited spoons. Once the spoons/energy are spent, that’s it, no more.

Some days, I spend my energy on things that are visible — taking the boys to school, going to an appointment, meeting someone for coffee, etc. Once the spoons are gone, I crash and literally have no energy to do anything else. But people see those visible things I’m doing and can’t comprehend how much I pay for that time of activity. Sometimes, I’m at a point in my medication cycle where I just have more energy than other times during the month — on those days, I almost feel “normal” or how I felt before cancer. If I meet someone or run into someone on one of those days, they have a picture of me that isn’t always accurate. Sometimes, I am at a point in my medication or scan cycle when getting out of bed is the most I can do. If someone meets me on a day of very low energy, they may have a picture of me that isn’t always accurate.

One thing I’d like to add, which may be obvious to some is that a disability isn’t just physical. I’ve talked a lot about physical symptoms in this post since I think those are examples that resonate with most people; however, the emotional, psychological, cognitive, spiritual and every other area of life affected by living while dying cannot be overstated. Energy and pain are affected significantly by overall wellbeing, it’s just harder to see objectively.

These labels are ones that resonate with me since both invisible disability and dynamic disability do reflect a portion of what I live with. Each day is different for me and yet my diagnosis remains the same.

Published by Abigail Johnston

I'm a daughter, a wife, a mother, and I've been living with Stage IV Metastatic Breast Cancer since March, 2017. All of the words I publish are my own.

Published

34 thoughts on “Dynamic/Invisible Disability”

    1. Yes!! It’s so versatile! As someone commented on Twitter too, it’s applicable to mental illnesses as well as autism and a whole host of other neurological issues too. As a capable healthy young person, I met and got to know a woman with fibromyalgia and it was a huge teaching moment for me as she described what she went through. There is just so much we don’t know about others. Thank you for reading and commenting!!

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  2. I hear this! I use the spoon theory, too. It’s amazing the first time you read it. Sadly some still just don’t get it.

    I was “at the school helping one day, so clearly I can go to work every single day for 8 hours and not need to sleep for 2 days to recover.”

    I like the word you used: something about it being “inconceivable.” That’s exactly what it is. I didn’t “get” my “box” before I was here. I didn’t “get” the caregiver role or Josh’s issues before we were there. So I shouldn’t be surprised when others don’t. They don’t have a frame of reference. Kind of like people who don’t believe in Covid until someone they know (who was healthy) struggles or passes from it. Not even then do our lives count. They are dismissed as people with “underlying conditions.” A label I’ve “LOVED” 🤮 through Covid.

    As always, thanks for writing this. ❤️

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    1. I think this is a really good point, that until a thing is personal to someone, it is harder to get. I’m not sure it’s impossible but definitely much much harder. I also hate being dismissed as not worth saving because of an underlying condition (my interpretation of the rhetoric and dismissive language). I’m hopeful we will see a difference soon because of the leadership in the White House where previously there was so little. Only time will tell!

      Thank you for your consistent thoughtful responses. ❤️

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  3. Thank you for writing this blog. I’ve never heard of spoon theory before and will surely investigate further. As I like to say to my students, “We don’t know each other’s stories, so be kind.” I appreciate you being so open with your story. ♥️

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  4. Every time I read one of your posts, I want to reblog it because it is so helpful. You have so many balls up in the air at the same time and are amazing in the way you use your energy. I totally get this because my life and energy level is the same way on a less severe basis. I say less severe – you get a lot more done than I do even with your disability. You are an amazing woman, Abigail.

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  5. After I applied for Disability, I felt like such a fraud because I look fine. Two years later I still look good. But just as you say, my Spoons are limited.

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  6. Reblogged this on By the Mighty Mumford and commented:
    HAVING BEEN DECLARED DISABLED—I FOUGHT IT FOR TWO YEARS UNTIL I COULDN’T DO THE NEXT AVAILABLE JOB ANYMORE—I STILL HAVE TO EXPLAIN TO PEOPLE WHY I CAN’T DRIVE (PARKINSON’S, DIABETES, EYESIGHT). BUT THEY DO SEE MY CANE AND HOW I WALK AND BREATHE. EXPLAINING CHRONIC DEPRESSION, HOWEVER—IS MY DYNAMIC DISABILITY! WE FEEL FOR YOU, ABIGAIL!

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  7. YOU ARE IN GREAT COMPANY HERE, BABE! YOU SHOW THE REST OF US THE GUTS AND DETERMINATION WE NEED FOR OUR OWN HANDICAPS—PHYSICAL OR MENTAL! GOD’S TRENGTH AND POWER COME SHUNING THROUGH YOU—OH RADIANT ONE AND DAUHTER OF THE MOST HIGH ❤ ❤

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  8. All so valuable, Abigail. I had learned about “invisible disability” from darling Caz at Invisible Me. Though I’d never be rude and approach someone parking in a designated spot, that term was an eye-opener for me.

    Once again, thanks for using your experiences to emphasize/expand our shared humanity.
    💕

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  9. I also like spoon theory because it applies to so many situations. I usually don’t refer to energy expenditure as such – I just assess if I’ll have enough energy to do all I want to do each day. I am usually done for the day after treatment and intentionally do not plan anything else. Looking forward to Zoom Book Club later and I have enough spoons for it.

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