If I’m well-rested and it’s early in the day, my speech sounds normal and you’d never guess I experience frequent fatigue, which can make it difficult for me to speak. I don’t usually venture out when I’m feeling low so few people ever see that disability. Keeping my disabilities hidden is a matter of timing, a factor over which I don’t always have control.

Take the holidays, for example. Occasionally, I’m with a crowd of people during that time and not all of them know about my myotonic dystrophy. And even those who do may not be aware of how it affects my life and how it can change from year to year or even month to month or day to day. During a recent holiday, for example, my in-laws and I were sitting on a circular couch, talking about nothing in particular, while munching on a variety of snack foods none of which I could eat due to my trouble with swallowing. At one point my sister-in-law looked at me and said, “You look good and seem to be doing well.”

Crafting Appropriate Responses

How do you respond to an out-of-town friend or family member who knows you have a progressive muscle disease but clearly doesn’t understand the realities? Do you agree that you are feeling well? Mention that your Facebook page doesn’t capture the full scope of your disorder? Point out that you can’t eat the snack food because of your fear of choking? Say you’d love to talk to her in more detail one-on-one?

Since I was with a group of 16 people, including children, I didn’t think it was appropriate to be my normally transparent self. I didn’t want to make anyone feel uncomfortable or sorry for me. Instead, I spoke in generalities about my condition.

In a more intimate group or with people I know more deeply, I might mention my podcast episodes, which focus on issues relevant to people with chronic illness. Or I might share anecdotes from my support group meetings or conversations with different physicians I see regularly.

Feeling the Crowd

The key for me is gauging people’s interest and ability to talk about uncomfortable things. If the guests are people I see infrequently, say once a year, and who have their own demanding lives, I keep the conversation simple. What is to be gained by sharing, I often ask myself. With others, I may be able to share some of my challenges organically without disrupting the joys of the season.

Sometimes I find a kindred spirit among a crowd that can’t understand my daily limitations. One of my brothers-in-law, for instance, broke his leg several years ago and was diagnosed with skin cancer recently. He understands how illness and physical changes can color your life and emotions. Whenever we see each other, he conveys a warmth and concern for me that goes beyond words.

Being Grateful

During every holiday season, I cherish the family and friends who take the time to understand my reality, and feel compassion for those unable to understand it at this point in their lives.