Parenting With an Invisible Disability

Depending on the day you see me, I might look “normal,” I might look exhausted, or I might look like I sprained my ankle. I have trouble with stairs. I might keep up with the flow of the pedestrians around me, or I might be moving at a snail’s pace. When you talk to me, I might seem like I’m following right along, or I might seem spaced out and not listening. When the weather’s hot, I try to go outside as little as possible because it makes me feel like I have the flu.

I suffer from an “invisible” disability.*

For some, it’s fibromyalgia. Or migraines. Or depression. Or diabetes, ADD, or chronic fatigue.

My invisible disability is multiple sclerosis.

As you can imagine, this adds an extra layer to parenting young kids. For starters, I have to ration my energy. I can’t have too strenuous of a day if my husband is getting home late from work, because I need to have enough energy to handle the kids on my own. Also, I have to carefully consider which activities are within my abilities, which I can hand off to my husband, and which I have to just say no to.

As you can imagine, the ever-present specter of mom guilt has a field day with that! It nags at me every time I have to tell one of my kids, “Sorry, you can’t do X because mommy doesn’t feel good,” or “We can’t do X because it’s too hot outside and will make mommy feel bad.”

For example, one especially painful moment came when we went to meet the coaches at my son’s first soccer orientation. It took place at a giant middle school and up a flight of stairs. I walked all around the school with my son (pushing the baby in the stroller) trying to find an elevator. I could not find another way to get to the second floor. By that point I was exhausted, in pain, and in tears.

I couldn’t decide whether to leave or send my 6-year-old by himself. Some kind men came by and offered to carry the stroller up for me. But I had to tell them that I couldn’t manage the stairs myself. I trusted one of the men (who had an organizational badge) to take my son upstairs, introduce him to the coach, and bring him back down.

I sat at the bottom of the stairs, crying as other parents and kids came in. Not only was I frustrated with my inability to do what I needed to for my family, I was terrified that I had made the wrong decision in letting my son out of my sight with a stranger. Everything turned out OK. But still.

Then there’s the worry about others judging me — especially other parents. I wonder if anyone thinks, “Why is she parked in a handicapped spot? I saw her carrying her baby yesterday, and there’s nothing wrong with her.” or “Why is she always sitting down? She’s just lazy.” I rehearse conversations in my head in case someone accosts me for parking in a handicapped space.

I also remember to think about the positives that come from our situation. When my son was 4 we explained my illness to him, and he decided he wanted to raise money for research to cure my disease. He has learned to be amazingly patient and understanding (for a child) when my health negatively impacts his plans. He has learned that everyone is different and capable of different things. And he has learned that simply looking at a person doesn’t tell you the whole story. He regularly sees his father shouldering more than the usual share of household duties. I hope this will provide him with a model for his future.

I am amazingly lucky that I currently have a mild form of disease. Fortunately, I don’t have to deal with many issues that other families face on a daily basis. But there are things we do not share with the kids — my husband’s fear that my disease will take my life, questions of how we’d manage if it comes to the point that I’m not able to drive anymore, what if, what if. I hope time will help us decide what is appropriate to share with our children.

As a fellow parent, I have two requests for you:

Please teach your children to give the benefit of the doubt to others. They are probably doing the best they can. Don’t jump to the conclusion that they are being lazy. Instead of thinking or saying something critical, think about why they might be struggling with ordinary tasks you take for granted.

Also, please consider accessibility when planning events. Think of ways to include those who aren’t able to fully participate in your event. When I see events like hot yoga or nature walks, I generally dismiss them as things I can’t participate in. But it really means the world when people take the time to ensure I can be included.

*An invisible disability is a physical, mental, or neurological condition that is invisible to the onlooker and that limits a person’s movements, senses, or activities.