Ask Max: Is It Okay to Say No? – Protecting Your Time Without Guilt

Your monthly Q&A with Maxine —Duchenne parent and HF Fundraising & Chrysalis Grant Manager

Your monthly Ask Max, a space where the Duchenne community can send in real questions and hear directly from someone who’s living it.

Last month, 'Do Wheelchairs Mean Giving Up or Finding Independence' 

This month 'Is It Okay to Say No? – Protecting Your Time Without Guilt'

Maxine responds below and shares her strategies to try and cope as best she can.

Maxine writes:

 'Is It Okay to Say No? – Protecting Your Time Without Guilt'

As parents and carers of children with Duchenne, our days are often a delicate balancing act of hospital appointments, school meetings, managing EHCPs, therapy sessions, and somehow trying to keep the rest of life running too.

It can feel like there’s always another thing on the list, another demand on our time, and not enough hours in the day to give everything, and everyone the attention they deserve.

We talk a lot about care, but not always about self-care. It’s so easy to put ourselves last, to feel guilty for saying no, the reality is we are often stretched too thin. But the truth is, it’s okay to say no, in-fact, it’s essential.

Recently, we received an appointment for our son Austin to be measured for new orthotics. Normally, I would have just added it to the calendar without question. But that particular week, we already had three other hospital visits booked, alongside work and everything else that needed doing at home.

It felt overwhelming, and for once I allowed myself to pause and ask does this really need to happen this week? The answer was no, it could wait.

So, I picked up the phone, re-arranged the appointment, and immediately felt lighter. The world didn’t fall apart, my son still got his orthotics, just at a time that worked better for us.

Saying no doesn’t mean we’re failing, it means we are protecting our energy for the things that matter most. We can’t pour from an empty cup, and taking care of ourselves helps us show up better for our children and our families.

So if you’re feeling pulled in every direction right now, please hear this... you don’t have to do it all, you are allowed to rest. You’re allowed to say no and you definitely don’t need to feel guilty about it.  

In fact, if you ever find yourself feeling torn or unsure, please feel free to pick up the phone and give me a call. I will happily reinforce the message and remind you that it really is okay to say no.

With care,

Maxine