Invisible Illness Week: What is it, and how can you be an ally?

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Happy Invisible Illness Week to all of my fellow warriors! To the allies of these warriors, this is for you, too! Thank you for everything you do to support your person(s). Now, what is an invisible illness? Disabled World, as featured by Umass, defined invisible illness as “Invisible Disability, or hidden disability, is an umbrella term that captures a whole spectrum of hidden disabilities or challenges that are primarily neurological in nature.” (Umass, 2015)
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To see the article in its entirety, see this link.
https://www.umass.edu/studentlife/sites/default/files/documents/pdf/Invisible%20Disabilities%20List%20%26%20Information.pdf

 

In the last five or so years it has been estimated that approximately 10% of those living in the U.S. suffer from an illness that is not readily apparent to another’s eyes; however, that does not minimize or delegitimize their experiences, or struggles. It can be difficult to recognize what you cannot see, or even understand, so let me begin by listing (a few) examples of an invisible illness

  • Allergies and food intolerances
  • Arthritis, especially rheumatoid
  • Cancer
  • Chronic Fatigue Syndrome
  • Depression and mental illness
  • Diabetes
  • Migraine and headache sufferers

I battle four invisible illnesses: Anxiety, migraines, chronic pain, as well as arthritis. (talk about high maintenance). I have noticed that separate from the symptoms of these conditions, what I struggle with equally is the lack of support from the world around me. The general public quickly understands the difficulties related to my Cerebral Palsy, and I believe that is largely due to the fact that it is very apparent. However, the same cannot be said about my invisible illnesses. There have been days where I have called out of work because the spasticity was so bad I couldn’t remain upright in a chair. I have been unable to see plans through with friends because I was curled up in bed with tears rolling down my face. Worse yet, when I tell someone I have a migraine I’ve had people say “oh, that’s just a headache. Take Tylenol.”

Well… no, that’s not quite how it works. Chances are, someone in your life has an invisible illness. There’s even a chance that you’re unaware of it because they battle it in silence. So, how can you be an ally to someone battling an invisible illness?

 

  1. Offer support, not judgment!- Sometimes the best thing you can do is sit with them amidst their struggles, and ask them what they need most from you. Sometimes that may be understanding when plans are abruptly canceled. Sometimes, helping them with a task they are struggling with that day can make them feel empowered, as well as productive. Other times, just sit with them and don’t try to fix their pain, but let them know that you are there. It’s easy to feel burdened, it is harder to be kind to yourself; so offer them kindness and understanding.
  2. Practice Bystander Intervention- The simple premise behind this concept is: if you see something, say something! The world is not necessarily kind to the things it cannot understand. If someone says things like they’re doing it for attention, not again, what now, I bet they’re faking it, call someone out. Do not allow those words or beliefs to go by unchecked. Beliefs, statements, and mindsets like these only add to the difficulties already faced. Be an active and vocal ally, not just a friend.
  3. Understanding and forgiveness go a long way- It is okay to be disappointed that plans changed or were delayed, but do not penalize an individual for putting their body and needs first. Coming from personal experience I am often embarrassed, disappointed, and sad that my body dictated what I needed that day, and that it eclipsed my wants. It was not personal. Reassure your loved one, and know that it was absolutely not personal.

 

I hope that you found this both helpful and informative; and if you know, love, or support an individual with an invisible illness, from all of us, we thank you!

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