Disclosing the grim reality of caregivers: A working mother's confession of why she's hiding the truth

November is the Caregiver Awareness Month.

As a caregiver (and parent) of a disabled child, I could spend hours explaining what challenges this life brought on my personal and professional life.

What's definitely helped me in the early days was the ability to speak about my experience openly, both at work (thank you, Gartner for HR ) and outside of it. Sharing the fact that I have a disabled child was healing, and my assumption was that everyone in my circumstances would be able to speak up when the pressure of caregiving becomes overwhelming. How little did I know at the time...

Recently, I’ve shared an update on LinkedIn to say I’ve set up HumanKind - an organisation whose purpose is to normalize disability in our society. In my post, I explained why we need to fight ableism and why disability inclusion is something that will benefit us all.

I saw a wave of positive responses, which was incredibly heartwarming. And then I received this message from a person I’ve never met (shared with permission of the author):

‘Hey Anna,

I really appreciate the initiative that you have taken. I feel you, as I am in a similar boat, but one thing that differentiates us is the fact that I have still not been able to publicly inform and accept my son’s mental health conditions. My son has autism and ADHD, both of which affect his behavior a lot, and very clearly show the fact he’s different.

We live in a society where no one asks us about our son. And we as parents never have the courage to talk about it publicly, although everyone we socialize with realizes the fact that our son’s not typical.

We fear that the labelling is going to draw a boundary and that we won’t be the same as rest of ‘the clan’ any longer. I am not sure if I was able to convey my feelings in this message, but we have had a very hard time to keep my son’s condition hidden in order to be socially accepted.

Just know that somewhere far away, there is a parent, in hiding, supporting you wholeheartedly.

Lots of blessings for your endeavors.’

If this doesn’t show why disability has to be normalised, I don’t know what will.

I can feel the pain of this mother deeply. I can imagine her life, the daily struggle to fit in, and the sorrow that comes with it. I also feel for the son, who I can see is loved so dearly, but who happens to live in a society that doesn’t allow to be different.

The person who sent me this message lives in a highly developed, highly respected country. A country that can be easily perceived as modern, tolerant and open-minded. This person could easily be a colleague that's sitting right next to you, or someone you've just talked to on a Teams call.

The fact is that no country, no society, and no workplace is free from ableism. And we have a lot of work to do to boost the understanding of disability, because whether we like it or not, we'll all be touched by it in our lifetime.

Please share this to spread awareness about the fact that countless families suffer from lack of acceptance. It’s time we finally stopped excluding them from living a normal life.

And I have one more request. The mother who sent me this message is reading this article. If you have a moment, please send a like or a comment that will show her that you care.

Thank you on behalf of the author of the above message, and on behalf of countless other caregivers and parents who don't feel safe enough to say that life is hard when you have a disabled child. I see you. We see you.

Image description: A grey image of trees in the fog.