The Emotional Impact of Diagnosis
Anyone can become disabled, and most people do gain a disability at some point in their life as they age. Every disability becomes official through the diagnosis process.
I am personally fascinated with the diagnosis process, and the ways in which it impacts our connection to our disabled experience and identities.
Receiving a diagnosis marks a significant change in one's life- a moment where you will forever recognize the start of a new journey. For many, this process can be long, confusing, emotional and distressing.
Recently, I conducted a survey with over 50 disabled individuals about their diagnosis process, and its mental and emotional implications. The results were fascinating, as they both confirmed and questioned my understanding of what is a truly vulnerable and complex experience.
Here are some of the most telling results:
The survey began by asking participants about their initial response after learning of their disability diagnosis. 69% of participants reported that they felt lost or in shock, while 31% of participants reported that they experienced feelings of sadness or anger.
It is normal to begin your disabled journey feeling a wide range of emotions because it is in fact, a deeply unique emotional experience. Being diagnosed with a disability is a life-altering event. The way that you function on a daily basis will forever be different. At first, this shift can be overwhelming- this is both a typical and understandable emotional response.
To me, what happens next in the diagnosis process has an even more significant impact on the way you relate to and view your new disability. For example, what type of support did you receive from the medical professional who provided you with your diagnosis?
A staggering 84% of participants reported that their doctors were not emotionally supportive throughout the diagnosis process, while 9% reported that their doctors were supportive and 7% said their doctors tried, but did not have adequate resources available.
This, unfortunately, is not a surprising result.
Firstly, doctors are not trained to provide emotional support. They are trained to identify medical conditions, and provide potential solutions to maintain or improve overall health.
I don't believe it is the sole failure of the medical system that people with disabilities do not receive proper emotional support after receiving a diagnosis. I do, however, believe that this is a major failure of social systems towards the disabled population. Being disabled is complex, unique, and ever-shifting. There are multiple layers to the emotional experiences of having a disability that range from personal to external.
Society has been built on the premise of ableism- that having a disability inherently makes your life inferior, unworthy, and deserving of pity. Take blind people, for example.
We are often portrayed in the media in two specific caricatures:
We are depicted as sad, hopeless, depressed, and unable to do anything on our own. We are shown as constantly being lost, living a boring and dependent existence.
Or, people with blindness are depicted as a superhero figure with unrealistic powers that save the world.
So, when someone receives a diagnosis of uncorrectable vision loss for the first time, it should be no surprise if they initially worry that they will live an unfulfilling, sad, and difficult life. They aren't superheroes! The only other clear option is to begin a downward spiral into a lost, helpless, and unfulfilling life, right?
If you're listening to or reading this blog, you likely know that these depictions of the blind or disabled experience are false. Many people live happy, fulfilling, and empowering lives after their diagnosis. But, how does someone who is newly diagnosed build a state of self-worth and confidence if the doctor providing their diagnosis is not trained to provide emotional support? Where do people who are newly diagnosed turn to first? Their families and close friends, of course.
In the survey, we asked people with disabilities how their family and friends responded to their diagnosis.
45% of participants reported that they either did not feel supported or that their family and friends did not know what to say. 33% reported that they did feel supported, and 23% said that their family and friends did try to be supportive, though their efforts were not fully successful.
Now, there are many factors at play in whether or not your family and friends are supportive of your disability. However, I'd like to focus on what I consider the main factor: Do they have a disabled lived experience themselves, or have they previously been close to someone with a disabled lived experience? If the answer to that question is no, then you can likely expect the support your family and friends provide to have great intentions with mixed results.
You can't expect your family and friends to be experts about disability. How can one expect them to provide beneficial support in an area they have no intimate experience in? The disabled experience is complex, it is unique, and it is ever-changing. The best support always comes from those who live with a disability themselves and who understand the intricacies of the disabled experience.
In the final question of the survey, I wanted to get a pulse on how folks currently feel about their disabled identities. I asked, "do you feel empowered and comfortable with your disability?"
33% reported that they are currently proud to be disabled, while 54% of participants stated that they are working on feeling more empowered and comfortable with their disabilities. 13% of participants indicated that they were not comfortable with their disability. This means that 67% of participants either do not feel comfortable with their disabled experience or feel that it is a work in progress.
Both through the findings of the survey and my professional experience, it is clear to me that many people are able to feel a sense of pride and joy with their disabled identities in time. Yet for the majority of individuals with disabilities, that journey towards acceptance can feel long, winding, and confusingly complex. There are quite a few "forks in the road" that are distressing to navigate without professional guidance and support.
People with disabilities want to live empowered lives with their disabilities, not in spite of their disabilities. In order to help as many disabled individuals to build self-worth, pride, and integration with their disabilities as possible, we as a society need to do a better job of providing accessible, affordable resources that support the mental and emotional wellness of individuals with disabilities. And whenever possible, this support needs to come from professionals with the lived experience of disability themselves.
In the coming years, I am committing myself and my business to providing more of these resources in accessible and affordable formats.
People with disabilities are human beings who deserve to feel empowered, whole, and fulfilled. We must do everything in our power to support our incredible community in doing just that.
Thank you to all of our survey participants for helping to provide this meaningful and vulnerable insight.
If you'd like to be involved with future projects like this one, I recommend following me and joining our community on Instagram.
Thank you to everyone reading and listening for being an ally in this vital and important work.
Sending love,
Charlie