8 Things this Human with A Chronic Illness Wants You to Know

Disclaimer: These are my opinions and my experiences. All disabled people have their own beliefs, opinions, and experiences.

I have a chronic neurological condition called Narcolepsy. I also have comorbidities like Depression and Generalized Anxiety Disorder. Here are some things that I want non-disabled people to know about my life.

• Yes, I have tried that. While suggesting treatments or medications to me may be well-intentioned, it comes across as condescending. I have been living with this condition for years and have tried dozens of methods of treatment. Try offering words of compassion and support instead.
• We aren’t always visible. When most people picture a disabled person, they imagine some mobility device or other evidence of disability. 74% of Americans with severe disabilities (as of 1995) don’t use a mobility device. I’ve heard stories of people being shooed out of disabled bathrooms because they didn’t “look disabled.”
• Ableism is everywhere. Last year, Dr. Phil did an episode about an interabled relationship and asked his audience poll questions. He said, among other things, “100 out of 100 times, this won’t work”. When asked if they would date someone who uses a wheelchair, 50% of the audience said yes. The results dropped 20% when asked if they would date that person if they needed caregiving. I am not in a romantic relationship, but this is an excellent example of how ingrained ableism is in all of us. Did you know that someone who receives disability benefits from the government can’t have more than $2,000 in combined assets and accounts, or they will likely lose their health and financial benefits? These are just a couple of examples of ableism.
• I have so much potential energy! I am constantly bursting with inspiration for a new hobby, a new income idea, a new way to enhance my life. The physical energy doesn’t exist in my body for many of those threads of inspiration to see fruition. It’s something that I’m learning to forgive myself for every day. I feel like I let myself and others down sometimes. I think that those of us with chronic illnesses have to get creative about how we work, think, sleep, and live.
• I have to enjoy the little things and practice positive thinking. The Law of Attraction and other ideas like it are trendy now and deservedly so. I think it is a powerful tool, especially for disabled folks. Focusing on the negative can be hazardous for anyone, but it is extra awful for me. There are so many ways in which I have to fight being negative about my life and the cards I’ve been dealt. I chose to focus on what I have and how privileged I am in other ways. I am lucky to live in a stable home and have access to healthy food and a supportive family. Even if the only good thing to come out of a day is that I got out of bed or took my meds, it is still amazing.
• Acknowledge me and my illness. While my disability does not define who I am, it significantly impacts my life and identity. Commenting that I don’t look or act disabled is harmful in multiple ways. It makes the assumption that most people are visibly disabled, that people with disabilities aren’t cognitively present, and that my disability must not affect me much. Instead, ask about how my life is impacted and how it affects my identity.
• I live at the intersection of privilege. While I do not benefit from thin or able-bodied privilege, I do benefit from white, mentally stable, middle-class privilege. I am not representative of the whole population of disabled folks. Many are living in poverty (hello gov’t benefits), BIPOC, and others don’t enjoy the same level of privilege as I do. As much as I try to educate and promote awareness of chronic illness/disability, I am fighting for the people in the world and this country who do not feel safe and who aren’t allowed to exist as they are with the same comfort as me.

If you have any questions about my disorders, feel free to email me or message me on social media! I am an open book. Let’s all educate ourselves and imagine a society that is kinder and more equitable for disabled humans!