Shalom Lim, who lives in Eastern Singapore, was diagnosed with Duchenne muscular dystrophy at 4 months old in 1996. He shares how mental health struggles impacted his treatment journey and what he wishes doctors and caregivers better understood.
Transcript
I was on treatment when I was 17, so that was probably in 2012, about 13 years ago. I was on this treatment that I had just started, and I suddenly began to notice that I had a lot of behavioral changes, mood swings, and I wasn’t sure if it was the chemicals or something that got mixed up by the treatment.
But I started to feel a lot more anxious and also got a lot more depressed easily. I experienced a lot of mood swings, emotional disregulation.
And that was one of the most difficult things that I’ve had to deal with because my physical condition — I actually already have a routine for that — and it’s not as challenging once you have the supports in place, but for mental health, it really is invisible and not as well validated as physical health issues.
You can get sleep quite easily. So for the medication that I was on — it made me anxious, it made me feel depressed as well, for prolonged periods. I was sure it was a little depression, but I was diagnosed with depression years later, after my brother passed away, because the side effects of the treatment, coupled with the loss of my brother, made it very tough for me to function — even to get out of bed.
Throughout my time taking that treatment, which was about 12 years, I had phases where I tapered off. But then I suffered physically and then went back on it. So it’s a really challenging balance sometimes to manage your physical health and mental health.
It’s just, for treatment compliance, I think ultimately we have to think about what works for us and what does not. Sometimes, when we are complying with treatment, again, we also have to deal with the side effects that come with it.
So in my case, I had to find the right dosage, and eventually, after my heart got better, I didn’t need to take it anymore. But the depression was really quite difficult, because I found myself blaming the treatment for my behavioral changes when it wasn’t just the treatment. It was also growing up — also environmental factors.
I would say that I wish I had support for my mental health issues earlier, so that we could find a way for that to also work in tandem with the treatment — finding the right dosage, optimizing the treatment plan, and also the mental health plan. It’s an important part of our overall patient well-being and good health outcomes for us as a whole.
Because what I wish I could give to doctors would be an understanding about the barrier — that, for doctors especially, sometimes we like to think that this drug or this treatment can achieve certain results. But we don’t think about the side effects. We don’t think about how it may adversely affect the patient. So I think it’s not a perfect treatment. Everything is give and take.
It’s only when the benefits outweigh the cost that we are agreeable to it. But at the same time, it’s not as simple as giving someone a try, and they can present the next day and then that’s that. It’s a whole journey.
It’s a whole complicated process. And patients often spend their whole lives — especially those with rare diseases — finding the right balance for the treatment, as well as taking care of their own well-being.
As for caregivers I would say be patient with the person that you are taking care of or that you are in charge of, because it’s really not an easy time configuring the right treatments and adhering to them as well, and also managing our mental health and also our careers at the same time. Treatments are not always affordable.
So I would say for the community as a whole just be understanding that you’re not just dealing with a physical illness. You’re dealing with a person. You’re dealing with an individual who has emotions just like yourself. And you also want to make them feel like they’re in a good place — besides being physically well, as well. So that’s what I would say about this.
