Living with FA has taught me the difference between pain and suffering

“Pain is inevitable, suffering is optional,” my husband, Dave, said to me. It’s one of his usual platitudes, and most of the time, I let it pass without much thought. But the last time he said it, I was mired in the mud of self-pity. I heard him and thought, “Really?” When you live with a chronic, degenerative disease like Friedreich’s ataxia (FA), a situation that’s not temporary, is suffering really optional?

Each morning, as I grab the pole that helps me get out of bed and into my wheelchair, I am viscerally reminded of how hard life with FA can be. It is easy to feel that the pain FA brings is suffering, and that it’s inescapable. Every day, I am less able than I was the day before.

There are countless examples of how painful FA is. I usually return to the most obvious ones. In 2006, I could still walk, though I needed a rollator. That same year, I began using a wheelchair part time. Now, 20 years later, I cannot walk at all and use a wheelchair full time. And that is only one of the many losses my FA symptoms have resulted in over the years.

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Have I endured many losses? I have. When I am down, I can feel entitled to suffering, but that is not where I want to live. I let myself be down sometimes; otherwise, I would be pretending things are good when they are not. That would not be acceptance. It would only keep me from asking for the help I need and drain my precious energy — energy I need to pursue my passions and make my life meaningful. Sometimes I feel entitled to suffering, but it does me no favors.

I do not mean to suggest that you can simply choose your way out of deep depression. My way out of the self-pity quagmire was not a single grand choice but many small ones over the years. I have sought counseling when I needed it, and I have learned that there are many ways to support your mental health. It is important to find what works for you. Those choices have helped me, little by little, understand the difference between pain itself and the suffering that can grow around it.

Over time, I have realized that living with FA has taught me an important lesson about the difference between pain and suffering.

Pain and suffering

Pain is a universal part of being human. No one moves through life without loss, disappointment, physical hurt, grief, or fear. We cannot control every event that happens to us, nor can we shield ourselves from every wound. In that sense, pain is inevitable. It comes with loving deeply, hoping sincerely, taking risks, and simply living long enough to experience change. To be alive is to be vulnerable to pain; accepting that truth can make us less shocked and bitter when hardship arrives.

Suffering, however, is often the story we tell ourselves about pain. It grows when we resist what is happening, replay it endlessly, or convince ourselves that the pain should not be here. We may not choose the first blow, but we often have some power over the second — the mental struggle that turns pain into despair. When we meet pain with patience, honesty, and self-compassion, we make room for healing rather than hopelessness. Suffering becomes optional, not because life stops hurting, but because we can learn not to deepen every hurt with fear, resentment, or resistance.

Today, when I pull myself out of bed, and it is hard, I remind myself that it is what it is. I accept that I have FA, even though it is not the life I would have chosen. I try not to stay stuck in who I was 20 years ago, but to live in the present while helping to create the future I want. I want the people who come after me to have a cure for FA. Pain may be inevitable, but I do not want suffering to have the last word.

Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.