November 9th, 2020
Even on good days, my chronic illness is never far from my mind. All it takes is a little extra exertion, or spending too much time sitting around and the chronic pain and fatigue begin creeping back in.
Life with a chronic illness can be a daily battle. But my Ankylosing Spondylitis isn’t immediately apparent to those around me. Unless I open up about my chronic disease, no one around me would know I’m in a daily battle with a ramped-up immune system that causes pain, inflammation, and fatigue.
And since few people know I’m living with an invisible illness, and since even fewer people can recognize the subtle signs of increased pain and inflammation, few people know when I’m having a good or bad day with my AS. That’s the nature of invisible illnesses--most people simply have to take my word for it.
But my friends cannot see my increased inflammation, my coworkers can not read my pain levels on any given day, my doctors cannot record the change in my symptoms from day to day, and my family cannot always recognize a change in my joint stiffness and mobility unless I tell them.
What is an Invisible Illness?
I wish I could say it’s a super power, that it allows me to do things that others just can’t do. But that’s not the case. An invisible illness is simply a broad term for any illness, usually a chronic illness, that is not outwardly visible. Diabetes is an invisible illness. Rheumatoid Arthritis is an invisible illness, and so is Major Depressive Disorder. Lupus is an invisible illness, and so is Ankylosing Spondylitis. The list goes on.
Invisible illnesses are often chronic, lifelong illnesses that progress in severity over the years. Many of these illnesses show up on medical tests--imaging, bloodwork, or other manners of tests--but sometimes medical testing does not paint a complete picture.
Often, the most debilitating symptom of an invisible illness is chronic pain. This is my experience with Ankylosing Spondylitis. At work, the only indication that I’m struggling through back pain is my constant squirming in my desk chair, but those around me don’t know why I’m squirming in my chair. My co-workers don’t know my constant stretching, standing up, readjusting, is caused by back pain from AS. Instead, it may appear like I’m anxious, or distracted, or any number of things.
What Others Don’t See
As the term ‘invisible illness’ suggests, a major roadblock to garnishing support and understanding is a lack of presentation or outward manifestation. Let’s face it, people often question what they can’t see.
To make things a bit more complicated, many invisible illnesses are constantly fluctuating in severity. For example, my AS symptoms are mild most days. I am grateful for that. But on some days my pain and inflammation ramps up, leaving me less mobile and more fatigued. But my friends cannot see my increased inflammation, my coworkers can not read my pain levels on any given day, my doctors cannot record the change in my symptoms from day to day, and my family cannot always recognize a change in my joint stiffness and mobility unless I tell them.
For this reason, it’s important to disclose the nature of your invisible illness to those need-to-know parties in your life. Who those parties are is completely up to you.
The Choice to Disclose
Of course, living with an invisible illness also means having the choice to disclose your illness or keep it secret. Since it’s often uncomfortable to talk about a chronic illness with all but the closest of individuals, the ‘invisibility’ of the disease may seem like a blessing. But I’d argue that disclosing the nature of your illness is important in certain situations.
I don’t like to have the conversation to disclose my Ankylosing Spondylitis. The conversation is always uncomfortable. I’m forced to make a judgement call regarding how much information to share, as well as figuring out the right words to talk to someone who may have never heard of AS. I often err on the side on disclosing less rather than more, especially when disclosing to a supervisor or colleague, because it often shortens the conversation when I only discuss what I see as need-to-know info. But that doesn’t make the conversation any less nerve-wracking.
Ultimately, it’s up to you to decide what you want to disclose about your invisible illness, and how you want to do it. And for all those out there who know someone with an invisible illness, please remember that a little empathy goes a long way. It’s important to realize that just because the major symptoms or effects of an illness are not visible does not mean they’re any less painful, real, debilitating, and in some cases disabling.