Coping with adversity when living with a rare disease

Adversity comes in all shapes and sizes and how we deal with it differs from person to person. I have faced great adversity at different times in my life, some of which I handled well and some not so much. For example, after being diagnosed with dystonia in 2001, I didn’t handle the first 5 or so years very well. Depression, anxiety, fear, anger, isolation, helplessness, self-loathing, and basically wanting to die from the insane physical and emotional pain was my way of life. I gave up.

Deep pits of depression and darkness filled my world, the polar opposite of the person I once was; an upbeat, fun-loving go-getter, which describes many people I know with the same condition and feel utterly beaten down that they can’t keep up with their former life. I am getting more of that person back despite still living with dystonia and chronic pain, but it has taken a lot of work. I had to take a new and different approach when the you-know-what hit the fan.

Many of us have heard things like, “we are only given as much as we can handle”, “what doesn’t kill us makes us stronger”, and other similar sayings. I don’t mean to be cliché, but it’s hard to argue them. When adversity comes our way, it provides us the energy to be propelled to a higher level. Most anyone you meet who has insight and compassion and lessons to share, it is usually because they have faced tough times. Before continuing, I want to make it clear that I have not conquered the secret to living a pain-free life or am cured of anything. I am just trying to share some perspectives that might help all of us across the board with any health issue feel better.

I try to keep in mind that adversity can be a great thing. Exhausting for sure, but always an opportunity to grow stronger if we view it this way, but it can also knock us on our ass over and over and over again if we are not careful. If you are familiar with me and what I write about, I try to pound home the notion that within every obstacle lies opportunity. In the very beginning of my first book, Diagnosis Dystonia: Navigating the Journey, I quote Herb Brooks (head coach of the 1980 US Olympic hockey team) who said to his team prior to the game against the Soviet Union, a David and Goliath match where the US miraculously prevailed, “great moments are born from great opportunity.” I try to remember this when confronted with challenges.

The concept that we can be propelled to a higher level in the face of adversity originally came from the Kabbalah, the ancient text of Judaism, which says, “The falls of our life provide us the energy to be propelled onto a higher path.” The belief is that the more challenging the obstacles, the more potential there is for personal growth. There are times when being broken down is what it takes to rebuild us to a place that is better than where we came from. As Ernest Hemingway said, “Life breaks all of us, but some of us are strong in the broken places.” I can relate to this because I have been able to use my pain and suffering for strength. Consider scar tissue…it is immensely strong. Emotional scar tissue can heal the same way if we find the right coping tools. I’d like to suggest my second book for some ideas- Beyond Pain and Suffering: Adapting to Adversity and Life Challenges.

Instead of always fighting what we view is wrong with us, we eventually have to say something like, “I am tired of falling prey to all of this! This is my life, and I am going to live it to the best of my ability despite the challenges and do my best to enjoy every moment. If all I do is focus on what is wrong with me, then I will live in a dark and depressing world. I accept that things are tough, and it won’t keep me from being happy.”

This is so much easier said than done, but it all comes down to the choices we make about how we want to live. If we want to be happy, we need to learn to be okay with things that may not be the way we want them to be; that they are the way they are and we can find ways to live with it, all the while remaining committed to our search for relief from our suffering. We need to embrace everything in life and feel it and then find ways to be okay with what we view as not okay.

None of us are immune to the challenges of life. At some time or another, we all endure tough experiences. When adversity comes, how we respond to it determines what happens next. Life experiences become tragedies if we make the conscious decision to make tragedies out of them. We can either resist or we can flow with challenges. If we choose to view all challenges as opportunities for personal growth, they can be a driving force for positive changes.