By Mike Matthews
At the end of 2021, Cambridge Dictionary announced their Word of the Year was “perseverance.” On top of all the profound collective challenges that everyone is currently experiencing, the myositis community has the added personal crucible of managing a chronic disease for which there is no cure.
Despite the best efforts of myositis researchers and clinicians, a large portion of myositis patients still do not achieve sustainable clinical remission. The lack of personal control can lead to learned helplessness, a victim mentality, and a myriad of other mental health challenges that I strongly advise seeking professional help for as needed.
Even as a career counselor with a preternatural optimism, it has been the challenge of my lifetime to persevere with a positive outlook over the past six years with dermatomyositis (DM), which has been refractory to a gauntlet of medications and treatments. Myositis forced my full retirement sooner than planned, and my habit of dispensing advice as a counselor has been replaced with humbly comparing helpful notes with others in the wonderful myositis community, many of whom have struggled longer and more mightily than I.
The Myositis Association (TMA) offers support groups, educational webinars, an amazing Annual Patient Conference—which is more impressive than you can imagine—a massive amount of educational material on their website, and other resources that I have benefitted from greatly. I honestly do not know where I would be without the support of my wife and TMA.
Through physical and other diminishments created by DM, I have had to accept a new personal normal and have embraced an unshakable, often tragic optimism, as I search for meaning and purpose during times of inevitable challenges. Fully accepting our myositis diagnosis can motivate us to find resources within ourselves that enable us to avoid falling into what the father of positive psychology, Martin Seligman, termed “learned helplessness.” This acceptance can help us move instead into learned optimism, despite our greatest challenges.
A “problem” is a situation that has a solution, whereas a “predicament” (which is the current state of myositis) has no solution. It is a situation that must be managed the best we can. We must stay realistic and authentic but maintain enthusiasm for the miracle of life and flourish the best we can alongside our myositis.
As a counselor, my career mission and purpose were to give support to my clients and empower them to overcome their obstacles, but it has always been difficult for me to accept offers of help when I need it. Maybe you have found yourself in the same dilemma. I’ve found that the staff and members of TMA, myositis researchers, medical personnel, and other resources are sincerely interested in helping those of us who live with myositis and our families manage our chronic conditions. I appreciate all their efforts and have unshakable optimism that their efforts will expand and reap tangible rewards in the future.
Through the diversity of our experiences, our myositis community shares triumphs and setbacks, joys and sorrows, and innovative ideas as we unite with common goals of effective treatments and the hope for an eventual cure for myositis. Every time we volunteer, attend a conference or support group, or participate in a webinar, it strengthens our bonds with our myositis family and weaves unbreakable threads that create a resilient fabric for our lives that supports us like a parachute, even in times when it feels like we are in a free fall.
Mike Matthews is a retired teacher, counselor, and mental health administrator with a mission to create a cohesive and peaceful world. He was diagnosed with dermatomyositis in 2017.
This article first appeared in the Fall 2023 issue of TMA’s The Outlook magazine.