Guilt often stems from a sense of responsibility and high expectations we set for ourselves. When MS imposes limitations, it’s easy to feel like we’re letting ourselves and others down. For me, MS is a daily challenge that affects my physical capabilities, mental health, and overall quality of life.
The Early Days
Being diagnosed with MS turned my world upside down. While I had anticipated physical challenges, I never expected the overwhelming guilt that would accompany my diagnosis. I was 44 years old when I was diagnosed with Primary Progressive MS (PPMS). My life was good; I had a great job, two beautiful children, and a wonderful husband. Before MS, I prided myself on being self-sufficient and active. I was a fixer, but I couldn’t fix me.
Because of cognitive issues associated with MS, I had to give up my career and my car. I will never forget the overwhelming devastation the day I failed the cognitive assessment to renew my driver’s license. Suddenly, MS was real, and it was going to have life-changing effects on our everyday family life. It didn’t just bring symptoms; it brought catastrophizing, ruminating, and the biggest for me—guilt. It was endless.
The guilt seeped into every aspect of my emotional well-being. I started feeling guilty for every inconvenience my MS caused. To me, the universe had shifted, and I was left grappling with my vulnerability. Thirteen years on, and I still feel guilty:
- Guilt about not earning
- Guilt on the loss of my career
- Guilt on the loss of independence
- Guilt on the loss of my car
- Guilt on the loss of the life my husband and I had planned
- Guilt on not being the first person my children call for a lift
Coping with Guilt
Guilt is a very complex emotion, one that I never expected to associate with my own health. Over time, I started to wrap my head around it. While I can manage my own emotions some days better than others, the tendency is always there to ensure that I am making things as easy and uncomplicated as possible for everyone else regardless of how difficult it is for me. That's the guilt—constantly apologizing.
As time went on, I gained some coping mechanisms. I joined a monthly MS support group six years ago, and they helped me to laugh again. It was comforting to know that I wasn’t alone and that others understood my feelings. These connections provided a sense of community and reassurance that it was okay to lean on others. I have learned to lower the bar on myself, acknowledge moments of guilt, reason with them, and let them pass.
Opening up to my family and friends has also been important but not something I find easy. When I share my guilt with them, they are quick to reassure me that there’s no need for it. While MS brought many challenges, it also highlighted the importance of focusing on what I can control. With the guidance of my GP, practice nurse, and MS community worker, I started engaging in activities that brought me a sense of purpose and accomplishment. These not only distract me from the pain and guilt but also provide a sense of purpose.
Lessons from My MS Journey
Guilt is a natural but unnecessary companion in the journey with MS. My experience keeps teaching me the importance of seeking help, embracing vulnerability, and focusing on the positives. For anyone else struggling with guilt, remember that you are not alone, and there are ways to overcome these feelings despite the challenges MS may bring.
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