Do you have a chronic illness or disability? Chances are that if you personally don’t, you know someone who does. What I’ve come to discover in my own journey with a physical disability is that no one tells you about the mental health challenges that are certain to arise. As well as how to navigate in a society where physical ability is considered a marker of one’s capabilities, intelligence, and value.

In planning a counseling group for this population I was deeply struck by the lack of literature surrounding the needed adaptations and skills to process the emotional, financial, functional, occupational, relational, and social challenges that arise. When I was diagnosed in 2013, and to this day, no member of my medical care team has ever suggested to me that these challenges were normal or that mental health support would be necessary to endure them. It was as though I was innately supposed to know how to comprehend and process the ongoing grief and loss. Internalized ableism, relationship changes, identity transformation, functional limitations and adjustments, discover flexible coping strategies, find financial resources, and understand the adaptive goal setting needed to succeed. I think when we ignore discussing all of these areas of change we promote the stigma that mental health care is for the weak. I feel a great passion in changing this mentality – not only for those with chronic illness and disability but on a societal level where the confines of ableism endure.

I’d like to linger on the concept of internalized ableism. Ableism is like racism, sexism, ageism, but is societal judgments about those that have disabilities. While it can be painful to acknowledge, we all have opinions. In your mind, you have a judgment about how clean a person is, how smart, how capable, and, I hate to say this, but what you feel they are worthy of having or accomplishing in life. Now, this may feel upsetting to hear, and that is all right, perhaps you have already done the hard work of looking at yourself and have insisted on not leaning into the societal norms. That’s great! But, most of us haven’t. Most of us are uncomfortable with those with disabilities. And, that uncomfortableness is what is internalized by those with disabilities – in fact, so much so that we begin to believe we are less or different, or less capable, or less smart, or less beautiful, or less deserving… You get my point. This is internalized ableism and it changes a person’s identity, mindset, emotional awareness, goals and aspirations, relationships, and how they seek help. I’m going to be vulnerable and say – it’s excruciating at times, but never more so than when you realize you have limited your own life due to what society tells you that you are worthy of. So, I encourage you to ask yourself again how you feel about those with disabilities and how you might become an advocate of equality.

The other concept I’d like to hone in on is the ongoing grief and loss. In the past two years alone I have gone from being able to read my textbooks at my kitchen table to needing specialized lighting, to needing magnifiers, to not being able to read them, and needing electronic books. I can no longer just use my computer, everything has to be continuously inverted and magnified. I surrendered my driver’s license. I have to determine where I will live and work based on the public transportation available to me. What that means is, though I, who I believe myself to be, would love to live in the woods – I can’t. Though I am not really a person who loves hats, I have to wear them always when I am outside. Though I would like to just run out for an hour to shop about, I have to check the bus schedule first. You see – who you are, it has to change, and I assure you, that causes grief. These are called symbolic losses in the mental health field, but they are viewed equally as intense as grieving a death. Also, they aren’t a one-time ordeal, they evolve as one’s condition changes and new loss occurs. So, the idea that one could process all of those emotions without mental health care, in my opinion, is simply absurd. We all need to understand this so we can help comfort each other and diminish the stigma around mental health care.

I am an advocate for this population, not just because I am a part of it, but because I realize now how very complex a road each of us travels. Support is essential. If it’s you that is suffering, I encourage you to reach out to a mental health professional.