Liam Kruesi, who lives in Manalapan, New Jersey, was diagnosed with Friedreich’s ataxia (FA) in 2014. He explains that treatment fatigue goes far beyond missed pills: It carries a deep psychological toll that caregivers must recognize.
Transcript
I wish they understood that treatment fatigue is not simply taking a pill. Maybe you miss it over something ridiculous — that’s treatment fatigue. But it’s a lot more than that. The psychological impact of such a progressive disease is very, very scary. It’s very upsetting for a lot of patients.
I’ve spoken to a lot of people that deal with FA on the regular, and the prevailing opinion is, yeah — it’s infinitely the hardest thing on your psyche, just watching yourself slowly withering away, slowly losing the ability to do things that make you happiest in life. It’s very, very difficult to deal with.
And then on top of that, now you’re doing all these treatment methods. At a certain point, you’re like, forget it. I’m just going to eat the cake and stop taking my pills. That’s the wrong outlook. Especially the caregiver should understand this line of thinking. It should be something of major importance in any treatment methodology, really.
