My daughter decides how much to share about her LEMS

As an older teenager, she deserves more autonomy about her health decisions

Lori Dunham avatar

by Lori Dunham |

Share this article:

Share article via email
banner image for the column

For most of my life, I’ve been an open book. I tend to trust people quickly and make fast friends. That’s partly out of necessity, as I’ve been a military wife for most of my adulthood and military families tend to settle in quickly. In my case, that tendency also applies to friendships.

However, when my daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS), I quickly learned the people I could trust with our circumstances and those I couldn’t trust. Some hurt me with unthoughtful comments. Others cut deeply with a lack of empathy for what our family was going through.

I became more guarded and no longer let people see me in my most vulnerable moments. I built safeguards around me to protect my family. Some of those boundaries were healthy and should’ve been established years before. Others left me feeling isolated and alone.

It took time for me to understand how much, and when, to share about my daughter’s LEMS.

Not only did I have to weigh the information I could share, but I also had to consider that it wasn’t my health I was discussing. I had to ask hard questions: How much should I share with friends? How much does Grace want me to share? Should I leave it up to her? Does she feel comfortable if I disclose information about her health struggles?

Recommended Reading
This announcement illustration shows the word

FDA will consider request to raise Firdapse’s maximum daily dose

With aging comes greater autonomy

Those questions, and their answers, have changed as Grace has gotten older. She’s 18 now, so I can’t share some things that I used to when she was younger. She offers me input for every column I write.

Recently, Grace decided she wanted to go through a corn maze with some friends from college. I knew a lot of walking was involved, so I worried that she’d get tired and struggle to make it through the night — and afterward, she had to wake up early the next morning to go to work. I knew she’d be exhausted.

She carefully evaluated the situation and decided that she still wanted to go. While I would’ve preferred that someone in the group be aware that Grace has LEMS, she chose not to tell anyone. As Grace explained it, she doesn’t want to be viewed as the “sick kid” all the time.

Grace went to the corn maze and had a blast. She navigated through it twice without any help and was proud of herself.

As a parent, I must allow Grace to share her story in the way that makes her most comfortable. For her, sometimes that means not sharing anything at all. And I’m learning to be OK with that.

Note: Lambert-Eaton 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 other 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 Lambert-Eaton News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenia syndrome.


Leave a comment

Fill in the required fields to post. Your email address will not be published.