Describing Adversity

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Describing adversity (disability, disease, condition, or disorder) to someone who does not understand it can be difficult — particularly if the adversity is neither common nor visible. Overly scientific descriptions are rarely understood. So, what is a good way to describe a disability to someone who is not familiar with it?

The Mighty asked its readers on Facebook to share how they describe their own, or a loved one’s, adversity to people who don’t understand it. The responses received were informative, creative and incredibly helpful.

Here’s a few of the responses:

  1. “My daughter has dyspraxia, which is poor motor planning because of slow neural transmissions. I describe her to others as being a super-computer with a dial-up modem.” — Stephanie Bruttig Brander
  2. “My son has autism. I tell people the best way to describe what my son deals with daily is to imagine being in a foreign country. You do not speak their language, they do not speak your language and you can’t communicate your needs to get help. You’re lost, hungry, thirsty, etc… How frustrated would you be? I believe this is a great visual aid for others to understand.” — Theresa Angrisano
  3. “I explain that having systemic scleroderma is like having a vat of concrete poured into your veins, skin, and organs. Eventually everything becomes so hard to move that you are paralyzed and everything shuts down. You slowly turn into a living statue.” — Chanel White
  4. “[I explain it] with truth. My son has many scars from multiple surgeries. He is 6 years old and we always discuss his health, scars and disabilities with honesty. I prefer questions rather than stares or shooing people away.” — Jenn Budd
  5. “My little brother once asked, at 3 years old, why he didn’t have crutches like me. I told him, ‘Because my legs aren’t as strong as yours, but that’s OK.’ He accepted that and had a simple, positive explanation to take forward with him.” — Tonia Says
  6. “I have depression and anxiety disorders. I [explain it] like this: Depression and anxiety are teammates and I’m the opposing team. Their one and only goal is to drag me down. They make me paranoid, they make me feel useless and they steal all of my energy and motivation. However, sometimes, they go on vacation. I never know how long the vacation will last, but I get stuff done while they’re away.” — Sarah Cecilia Flanigan
  7. “I had to explain [my daughter’s seizures] to her 1st grade class after she had one at school. I explained like this: ‘[My daughter] has something special about her. Her brain has seizures, or, like her brother calls it, ‘her shakes.’ She is what we call epileptic. I know it’s scary, but when she has her shakes, it’s important to stay calm and go get an adult so they can help her. If you can’t find an adult, get her brother, he’ll know just what to do.’ Then, we began our conversation of what our siblings help us do and why being a ‘helping friend’ is so important.” — Crystal Wright
  8. “I tell people who ask about my son’s multiple conditions that he was in such a hurry to see the world he showed up a little early. He has some issues but he is awesome and happy and that’s what matters.” — Jessica Hirschenhofer
  9. “[Living with depression] is like treading water and never reaching land.” — Barbara Winthrop
  10. “[I explain my son’s] Down syndrome to the kids at his school by using an example they can relate to. I came up with the concept of two bears made out of Legos that are very similar, but with one difference — an extra chromosome or an extra ‘lego-peg.’” — Ingrid Muschta

*Some responses have been shortened and/or edited.

To read the complete article written by the Mighty staff, click here.

Credits

Click here to read another Beyond Adversity post.

Thanks to Ross for sharing the article with Wendy who shared the article with me; The Mighty staff for writing/publishing the article; and all the people who, directly or indirectly, made it possible to include the picture and text in this post.

3 Comments

  1. Scott, usually we hear of a patient’s family having to deal with physicians who are not caring or respectful. That you, as the patient, fired your doc because he was rude to your family speaks volumes about your values!

    Good call, in my opinion.

  2. My mother had expressive aphasia after a severe stroke. Because she didn’t speak, many people thought she could not comprehend what was going on and spoke about her like she wasn’t there (including a neurologist who I promptly fired ). Many others treated her like she was simple minded or deaf. I told people that she still had LANGUAGE, could understand them and formulate her own thoughts. There was just a disconnect of the language that is in her brain and the ability to express it.

    1. DiDi,I had a similar experience with a neurologist. He was extremely rude to me. I tolerated his rudeness because he was considered a great neurologist by other doctors and patients. However, when he was rude to my family. I fired him immediately. I like the way you describe aphasia as a “disconnect.” That is a nice way to explain aphasia to people who are not familiar with it.

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