When Do I Step In? Supporting Someone With Chronic Illness Without Taking Over

How many questions about one’s illness are too many?

I ask this question because of an experience my daughter had. One I watched unfold and stepped in to help too late.

My daughter has multiple chronic illnesses and was misdiagnosed for most of her life. Her symptoms worsened during her teens, and by the age of 20 she had to stop attending school and give up driving. Going on simple outings became more and more difficult, and eventually she became almost completely homebound.

Finally, we started getting some answers and seeing some improvements in her symptoms. She now uses a wheelchair when she goes out and has one for use inside the home as well. She gradually started feeling more secure in her physical abilities as well as with her mental health, and I was thrilled when she agreed to attend a business event with me.

It was a small event, and all of the attendees were seated at tables. She was in her wheelchair. An elderly gentleman sat at the table next to her. I watched from across the room and saw her smiling and engaged in conversation with him. After a while, I joined them and was surprised by the topic of conversation.

He was grilling her about her illness, her symptoms, what types of doctors she was seeing, where she was being treated, how she spent her time, and more.

My daughter had become a very private person who did not like attention focused on her at all, so I was surprised that she was having this conversation. Once I sat down, she did look at me at times, and I knew she was looking for me to answer.

I was trying to determine where her level of comfort was. I didn’t want to tell the man to shut up and stop asking such personal questions … well, yes I did. But I didn’t want to step in if my daughter was truly engaged in the conversation or was up to handling it herself. Before I did anything, I got called to another table.

Shortly afterwards, I saw a friend of mine, whom my daughter did know, step in and remove my daughter from the conversation. I thought this was good. I thought my daughter was managing things and had taken a break when she needed to.

I was wrong.

Minutes later, she told me she was going to wait in the car for me. She told me not to leave on her account, but she needed to go to the car. I packed up my things and left shortly after she did.

In the car, I learned how upset she had been the entire time. She didn’t want to have any part of that conversation with the gentleman at her table, but she was concerned about being rude.

I told her that he was the one being rude, and we discussed ways she could have tactfully ended the conversation. I also told her that if tact didn’t work, she absolutely had the right to leave the space with no worries about appearing rude. And if that didn’t end things, I would always have her back, as would any of our friends.

I don't know what the gentleman's intentions were. He may very well have believed he was simply showing an interest in her. But because my daughter's wheelchair made part of her medical reality visible, he knew there was something to ask about. That didn't mean she wanted to answer.

As her mother, this is something I wrestle with often. Not just with conversations, but in many aspects of life. When do I step in? When do I let her figure things out on her own? How do I know when she is truly handling something well or simply masking her suffering? Do I push or do I comfort?

My intentions are always to do what’s best for her. The problem is that I often don’t know what that is. In fact, she often doesn’t know what it is either.

I want to protect her while helping her move as far forward as she can. I don't want protecting her to mean taking away her ability to speak for herself. At the same time, I don't want giving her space to mean standing by while she is struggling and hoping I'll notice.

I also know it’s important to protect myself from exhaustion and emotions so I can best support her.

There isn't always an obvious right answer.

So, I’m submitting this article because I want to hear what others think. If you live with chronic illness or disability, when do you want the people who love you to step in? When would you rather they let you handle something yourself? How can they tell the difference?

And for those who are caregivers who are supporting someone with chronic illness, how do you decide when to protect, when to push, when to comfort, and when to simply be there?

Thank you to the patient who shared this perspective. The Living Radiantly Patient Perspectives series exists to give voice to the real experiences of people living with rheumatic, autoimmune, and chronic illnesses. If you have a story, insight, challenge, or triumph you'd like to share, we welcome your contribution. Together, we can help others feel seen, understood, and less alone throughout Clermont, Florida, and the surrounding communities.