A plastic cutout of a figure with two thumbs up. Hiding behind the figure is a shadow of the same man looking very disheveled. From behind the cut out is a speech bubble with a sobbing emoji.

What You Don’t See: Living With an Invisible Illness

Living with an invisible illness has taught me a couple of things: (1) people make assumptions about my condition based on what their eyes see; and (2) that I need to overcome my own biases when thinking about someone else’s chronic illness experience.

The invisibility of an invisible illness

Lots of people live with invisible illnesses. But what does the term "invisible illness" mean, anyway?

Invisible suggests a lack of outward appearance...the lack of something immediately identifiable to one’s eyes. It’s the opposite of visibility. The word visibility literally means "the ability to be seen," but the term and the definition have several connotations. What does it mean to be seen? When we talk about visibility for invisible illnesses, we’re at once talking about seeing, awareness, and understanding.

There’s a difference between someone seeing visible symptoms of our illness, being aware of what ankylosing spondylitis is, and understanding what it means to live with this disease day in and day out!

What your eyes can’t see

Many aspects of ankylosing spondylitis are not visible. While I take some comfort in that because I can be selective about who I share my experience with, I also understand the invisible nature presents a barrier to belief and understanding.

Chronic pain is a prominent aspect of AS. For me, the pain is often the most bothersome symptom. When I experience a flare-up in pain, I may be bedridden for days at worst, or fairly limited in my mobility and activities at best. But pain in and of itself does not show up to the world around me.

Fatigue is a common and sometimes debilitating symptom of this illness. AS fatigue can be the most disruptive symptom for me, making me feel like I’m walking around with weights attached to my body. Not only is fatigue not visible, but it’s hard to explain, adding to the wider lack of understanding surrounding invisible illnesses.

Visibility for invisible illnesses

We all can take steps to help the supporters in our lives understand our chronic illness better. We cannot force understanding or empathy in the disbelievers, but we can talk to those who will listen.

1. Talk about how you feel

Identify those allies in your life who are willing to listen and support you. Talk to them about how you feel. Without a chronic illness of their own, they can only understand if you share your experience.

2. Share your story

It’s daunting to share your story in general. Though many people will not listen, some will. I share my story here, on my personal blog, and to select family and friends. I don’t expect anything in return, but every once in a while someone from halfway across the world will respond to something I’ve shared and share their story in return. Those interactions are both heartwarming and heartbreaking for me.

3. Support disability rights, culture, and awareness

One way to expand the conversation about invisible illnesses is to support disability initiatives, culture, and awareness. Change takes time, but it’s worth the effort!

What are your thoughts about living with an invisible illness? I’d love to hear more about your experience and what you do to promote understanding!

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