Shalom Lim, who lives in Eastern Singapore, was diagnosed with Duchenne muscular dystrophy at 4 months old in 1996. He shares how caregivers can unintentionally undermine dignity and what they should do instead.

From my personal experience, one area in which caregivers may tread on our dignity and autonomy when helping us adhere to the treatment plan, is sometimes they make decisions on our behalf instead of involving us.

My personal experience, sometimes they assume what is best for you without asking you. And it felt really disempowering to me, so I wish they could let me in that conversation. I think patients should have the main voice in the treatment plan because, ultimately, they are the ones who are using it, and they are the ones whose lives are at stake.

I find it sometimes quite frustrating when caregivers or doctors think they know what is best for us, but they don’t have firsthand experience of being on the treatment. And sometimes, a lot of medical guesswork, I think, can take place.

So I would say patients need to have their say in the treatment timing and approach whenever possible and to frame these choices as collaborative rather than individualized. So what I mean by this is, like, patients, caregivers, medical professionals they all work as a team. And each individual team member has a stake — an equal stake — in the conversation.

So it’s important to have that equity in every healthcare discussion, especially when they think of treatment plans. The other thing is, like, for caregivers, in my experience — especially parents — my own parents sometimes, they can over-remind, they can nag me sometimes. I feel like I know what I’m doing, I’m in charge, and they shouldn’t worry too much about how I deal with my own body.

I think, ultimately, for us adults, most of us reach an adult age, and I think our health is in our hands. It doesn’t really help to have people nagging at us or overstepping the boundary, and sometimes that can feel very suffocating.

So I would say it’s good to have structured check-in times — that’s what you will have with an accountability partner. But it’s not checking in, like, every hour or every minute. I think sometimes, please trust the patients also know what they’re doing, and they have the autonomy, and also getting parents to decide how they want to adhere to the treatment plan.

The last thing is also know how to ask the right questions. Instead of, “The patient is not doing enough for their treatment plan,” or I think what would be better is to look at it in a more collaborative approach. And, “How can we do better? How can we make this work better?”

And it’s important also not to ignore the emotions of the patient because it’s very easy to have the stress of trying to recall what steps or what treatment to take because, for a lot of these patients, it can really be a whole mess.

So I think we need more patience and understanding. And sometimes we don’t deliberately forget this — it’s more because we are overwhelmed by the sheer amount of treatments we are on.

So what I would say is that it’s important to also bring yourself to the level of the patient and understand their position as well when we are giving care to others. And that way, we can also work toward supporting the well-being of the patient, which is, ultimately, to me, what matters the most.