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Feeling Seen as a Rare Disease Caregiver
This month as we get ready to celebrate Rare Disease Day on the 28th, I want to stop and think about being the caregiver to a loved one with a rare disease. My son, Noah, was diagnosed with Freidreich’s ataxia 4 years ago.
One of the very hardest things for me was knowing what to do after his diagnosis. I was so scared that I wasn’t doing something that I should be doing— setting up the right and best specialists, supporting him emotionally while still giving him space to process, and on and on.
If this is you today, a caregiver to someone who is newly diagnosed, I see you. You are in a traumatic and extremely frightening place. It feels like the weight of the world is on your shoulders, and it is too heavy to carry alone.
Even if just for a moment, set it down. Acknowledge that this is hard for you. You don’t have to have all the answers. You are doing the best you can under such difficult circumstances. Take one step at a time and don’t look too far ahead.
What would you say to a caregiver in this situation? What would have helped you during this traumatic time?
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