5 'Small Talk' Questions to Ask Someone With a Rare or Chronic Illness

My wife and I rarely attend social gatherings anymore. We are not anti-social people. We enjoy the company of others and the camaraderie and support social gatherings can provide. However, our past
experience with questions people ask – questions that are well-meaning but, ultimately, hurtful – has left us not wanting to venture out at all.

My wife has stiff person syndrome, a rare neuromuscular disease that affects only 1 percent of people worldwide. SPS and the symptoms of intractable muscular rigidity, spasm, and constant pain, limit all of her activities, and she has no longer been able to pursue her writing career. She uses a wheelchair. Now, my wife is an overachiever. She excelled in academics, and she puts 100 percent effort into whatever she does. The changes to her abilities have left her feeling like she can’t contribute to society or fulfill her God-given capabilities and talents. She is hyper-aware of her situation.

Enter the social gathering.

Social gatherings can be awkward for healthy, able-bodied people. For people with a rare disease, they can be occasions for extreme discomfort that induce anxiety and further feelings of not belonging. But social
gatherings shouldn’t be awkward. They should be uplifting, fun, and celebratory. Like I said, we used to go out often precisely because we enjoy being with other people. However, we have stopped going (except for church) because of the insensitive questions people ask when they meet her for the first time.

The “usual” questions of “What do you do for a living?” “What can you do for our group?” “Do you own a house?” and questions related to career, work, financial status, and social activity may not apply in the life situation of a person with a chronic illness or rare disease. I understand that people are just “making conversation” and don’t mean any harm; however, my wife, and I’m sure other people in her situation, leave the gathering feeling like they are not enough just being who they are (their intrinsic value as a human being and a child of God) because they can’t “contribute” in the same manner as able-bodied, healthy people.

I would like to suggest that people think about adopting different types of conversation starters when meeting someone with a rare disease or disability at a social gathering. Here is a starter list of five questions that would be more warm and welcoming for everyone, and they are conversation starters. They invite conversation rather than aim at a getting an answer:

1.  What kinds of activities do you like to do?

2. What are your interests/hobbies?

3. What movies do you like? (Many people with rare or chronic illnesses have a lot of down time.)

4. Have you read any good books lately? What kinds of books do you like?

5. Where do you live (as opposed to “Do you own a home?” as some people with serious health challenges are low-income.)

A plethora of other types of questions are available, but I felt a short list might be a helpful start. If the purpose of social gatherings is to truly connect with people, make them comfortable, and initiate what may become friendships, in my experience, questions like the five I have suggested are much more targeted to that end. I know my wife would feel much more included and less like an outsider if people asked questions that those of all abilities can answer. Small talk is for small people. Conversations aimed at getting to know a person and make a friend show genuine compassion and understanding and mean much more to a person with a rare disease/disability, and, I would argue, to all of us.

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