This past week, I was lucky enough to attend the RareX 2018 Conference organized by Rare Diseases South Africa. It was a chance for healthcare professionals, support groups, and patients to meet up, interact, and attend really interesting lectures. I knew it would be a worthwhile event, but I didn’t realize just how relevant this would all be and how much I would learn.
The gentleman who opened the event is the father of a child with Moyamoya disease (as well as being deaf himself), and his wife very sadly passed away only a month ago. He told us that she had taken her own life because she couldn’t cope with the responsibility of being a primary caregiver, and she also was suffering from terrible depression. He spoke about how she so often put on a happy face for the outside world, but when he found her journal, he discovered how much she had been battling through life and had carried the burden of life’s events all on her own.
It reminded me of the importance of caring for our caregivers. So often people ask how we as patients are doing, but they forget about our loved ones. They forget that a rare disease does not only affect the individual, but also the entire family unit. Siblings often miss out on a “normal” childhood and get brushed aside due to the parents needing to give the “sick” sibling more attention and concern.
Parents miss out on having quality family time without the stress of knowing when the next dose of medication is due, or when society judges without understanding the entire situation. Significant others carry so much more than those in a “regular” relationship, often having to lift up the family through the good and the bad.
They also must know medication lists by heart, stress about a spouse not making it until the end of the month or year, and fulfilling the role of caregiver without even signing up for it.
Caregiver fatigue exists, and it is something we truly need to be aware of. We also need to show our support and gratitude for all that they do for us. My husband has had to bathe and dress me, pull food and medication out of my throat while I was choking, take care of the house during my monthly admissions, call doctors and hospitals when I am unable to do so myself, and hold me tight when I feel like I am falling apart.
Today, I want to show my appreciation for my caregivers, from my mum and family to my husband, to my work colleagues, and to my doctors who haven’t given up on me. I love and admire each of you so much!
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