Living with spinal muscular atrophy (SMA) can trigger anxiety, and it’s an inescapable enemy most of the time. Although SMA is a disease that affects the physical part of the body, emotions and mental health are greatly impaired as well. There are many things to cope with and finding the appropriate strategies to help is essential.
During my early adolescence, I was shorted the advantage of learning the right coping mechanisms to overcome my fears and misunderstandings. I wasn’t skilled at sorting out my feelings, and knowing which ones were appropriate to share. No one offered guidance in this department, nor did I seek any instruction. It was naturally innate to wear a mask of strength, in hopes of avoiding seeing my loved ones sad for my well-being. It’s crazy to think, that even though I was the one suffering from the disease, I felt responsible for staying strong for the family.
Fears and worries were absent in my life up until my pre-teens. It was already difficult facing the natural nuisances of being a pre-teen, but when you mix a disability into the equation, the situation becomes greatly dilated. In this pre-teen season, the progression of the disease crept in like a dark shadow in the night. And the light that once gave you joy, can feel impossible to restore.
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Nevertheless, I know change is inevitable. We all must experience change in life. Good or bad. But, living with a rare disease, such as SMA, change comes far too often. It demands your time, energy, relationships, and much more. It leaves minimal room to prepare for. It reminds me of a domino effect, everything tumbling down at once. Whether it’s my scoliosis progressing, muscles weakening, knees and hands contracting, having difficulty breathing… the pile felt suffocating.
I feared sharing these changes with my parents or doctors. I was extremely petrified of disappointing them or finding out what the next medical procedure was to remain stable. My thoughts were, it could either cause more physical pain, disappointment, or no hope at all. Unfortunately, there was never a solid, fixed solution. There were only many temporary fixes to a permanent condition.
Reaching my adult years, SMA became more personal. I was angry at it. It was like a serial thief. Someone who kept robbing me over and over of my independence, due to a variety of losses. These included things like poor posture, sleep deprivation, bedsores, inability to draw or do the other hobbies I once’s enjoyed.
Without choice, I had to get used to my body functioning differently. One day, I would have full hand strength, and the next morning, I could wake up, and lose all movement in a finger. How do you cope with something like that? So sudden, and without warning. And although most symptoms of the disease progress slowly, some came in rows. I suppressed a lot of pain and frustrations. These changes were difficult for me and my family to overcome. Right when you thought one obstacle was under control, the next one would crop up, and it becomes an exhausting game of what comes next?
It wasn’t until recently, I realized everything I was feeling as a child was near-constant anxiety. It held me hostage for a long time. I cried a lot behind closed doors, I couldn’t sleep because my worries poisoned my thoughts. I wish I had been more knowledgeable back then, more able to properly express my fears and explain to those I loved, the heavy pressures I bared. I was mute because I knew they were baring them, too.
By not addressing these troubles early on, they intensified into the present day. I’m not someone who looks into the past and reflects on what I should’ve, could’ve done differently. However, what I’ve learned taught me how facing your fears with a hand to hold, and an ear to share is vital.
And, although addressing my concerns on a daily basis is a continual struggle, regardless of what I’ve learned, they’ve become more manageable. I give credit to my parents for beginning my life on a Christian foundation. If it were not for my faith and prayers, and the endless prayers of those who cared for me, I’m confident I would’ve collapsed from the weight of everything.
I won’t pretend that my uncertainties have fully escaped me. As an adult they are much more grandiose, including being alone, dependent almost fully on others, trusting others, and not to mention the epidemic of COVID-19; however, life still must go on. And, through many trials and errors, the first thing I learned for myself, is that no trial I face can be done alone. For me, surrendering my anxieties to my faith and building a community of trusted supporters added sweetness to life that no one should be limited to experience.
With that said, what I hope is that medical professionals would carefully consider the emotions and mental health of someone diagnosed with a rare disease, especially in childhood. Educating children early on and balancing the right information can help prevent considerable anxiety and prepare them for what to expect.
Sharing emotions with a professional to help guide the process, would help considerably. I wish I could have spoken to someone daily during my childhood. Even if I wasn’t showing I needed to be heard, I believe it could have prevented many panic attacks and fears throughout adolescence and adulthood.
