You Don’t Have to Feel Guilty for Missing Life’s Big Moments

We’ve all experienced a time in our lives when we missed an important event. Maybe work prevented us from attending a family get-together, or perhaps celebrations were too far away to attend. Regardless of the reason, we’ve all felt that disappointment about missing out on a significant occasion.

For those with a rare disease like myasthenia gravis (MG), missing important events can be a common occurrence. We already must deal with the barriers life throws at us, yet we also must consider the challenges our disease creates as well. Life’s demands, already difficult enough, become harder to juggle.

Although I’ve missed out on some major events and opportunities because of MG, the one that most affected me was the death and funeral of my grandmother. I couldn’t visit her before she passed away, and MG prevented me from saying a proper goodbye.

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We knew she wasn’t doing well, so several family members had an opportunity to see her and say goodbye. Unfortunately, I was at one of the weakest points in my MG journey. I had received a preliminary diagnosis of MG, but still needed confirmation from a neurologist before I could be treated. I could breathe on my own, but I was weak from head to toe.

I was too weak to see my grandmother, so I stayed at home while my mother and sister went to visit her. An hour passed, then two, and three. I became increasingly worried as the night progressed. Finally, they arrived home and told me that my grandmother had passed away.

After hearing the news, I was an emotional wreck. Mostly, I felt guilt. Looking back, I believe I made the right decision about staying home, but I didn’t feel that way then. I also still feel guilty now, and I’m not sure that feeling will ever go away.

I was in the process of working through my grief when a neurologist confirmed my diagnosis. I didn’t entirely understand what was happening, but my neurologist said I needed to stay in the hospital for five days to receive intravenous immunoglobulin treatment.

From that point on, everything was a blur. I packed a bag, grabbed my meds, and checked into the hospital.

It didn’t hit me until three days later that I wouldn’t be able to go to my grandmother’s funeral. MG had caused me to miss another important event. That made me feel sad, angry, and guilty — again. I didn’t give myself MG, but it still felt like my fault that I missed her funeral.

That was 11 years ago, and I’ve since realized that I can’t blame myself or MG when I miss important moments in my life. I just have to deal with MG for the rest of my life, just like MG has to deal with me. And trust me, I can be more annoying than MG any day.

It’s normal to feel like we’ve let people down when we miss something important, but if they truly love us, they won’t be bothered. I know my grandmother would have told me to put my health first. Our loved ones know that we miss out on things only when we have absolutely no choice about it.

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