Asking Eric: Mom of severely physically disabled son doesn’t need your uninformed advice

To Eric, My 30-year-old son has a crippling muscle illness that has left him physically incapacitated. He needs complete help in every aspect of his life. He is highly intelligent, has a bachelor’s degree, and has no cognitive impairments. His primary caregiver is my husband, who retired a few years ago.

When we respond that he is doing well despite the progression of his disease and that he manages his extremely difficult situation with grace and little complaint, people who are probably well-meaning inquire about his whereabouts. They then inquire about his plans for employment and frequently even begin suggesting jobs that he might find interesting.

These folks are unaware of the difficulties he encounters on a daily basis, and my spouse and I believe that what matters most is that he is content and happy. We make an effort to explain that he would have a great deal of stress from a work and that my husband would need to be there to support him constantly. Furthermore, we don’t see the need to mention that he would no longer receive benefits if his income exceeded the minimum wage.

We don’t believe we owe anyone an explanation, and even when we try to politely and succinctly answer their inquiries, they will always bring up the subject.

Although we are grateful that people have inquired about him, we would also prefer it if they would accept our response and move on to other subjects. How can we respond to these disrespectful questions without seeming defensive or irate?

I’ve finished explaining

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Dear Clarifying: Offering less of an update is one possibility. The well-meaning interrogator has less opportunities to make recommendations when they say something like, “He’s doing well, thank you.”

Reminding individuals politely but forcefully that they are ignorant is an additional choice. Yes, we have considered all of that and more. I assure you that this is just where we should be. We’ve been navigating this for 30 years, so we’re specialists. I don’t want to boring you, and it would take thirty years to catch up.

You are right when you say that you owe no one an explanation. Whichever route you decide on, keep in mind that changing the topic and interrupting a suggestion you didn’t ask for is totally acceptable and not defensive at all.

For inquiries, contact R. Eric Thomas at ateric@askingeric.com or by mail at P.O. Box 22474, Philadelphia, PA 19110. Subscribe to his weekly newsletter at rericthomas.com and follow him on Instagram.

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