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Greetings dearest RDG Readers -
It’s Mental Health Month and patients often need emotional support to supplement a new diagnosis or during the diagnostic journey itself.
Being so intimately reminded of the challenges of our biology and mortality can be heavy. At least it was for me. And still is if I’m honest.
I have been through it and I’ve written about it some here on Substack.
I feel like doctors can often have a hard time addressing the emotional weight of being a patient head on. And the responsibility can fall on the patient and their families to seek out support.
Incidentally, I think this can all help caregivers too. While the point of view may be slightly different, I hope it can support any emotional journey.
I will never suggest that you ignore the emotional rollercoaster it is to be a patient and or caregiver. I also do not suggest over-indexing on “positivity”. I find it best to “keep it real” but also be proactive about finding resources.
When I volunteer, I often say I wish I was a fairy godmother and could grant everyone’s miracle wishes come true. Maybe in my next life.
But in the meantime, I’ve written about 300 Substack posts at this point and from them I’ve created this curated list of articles in this resource guide email. I hope I can help you find light in dark places, push back against negativity bias, and navigate the chaos.
Life will find a way to break our hearts. I’m sorry about that. But don’t miss the good stuff, because it’s there too.
I really wish this is something you can “save for later” but if not, I hope it’s got something helpful for you because I know how hard it can be when life is at it’s most unfair.
Connect with Taylor on Instagram
When things are not okay...
May 23, 2025
A Q&A with a Therapist on how to get help and making the most of therapy. I’ve been profoundly NOT OKAY. I’m not sure I’d be functioning half as well as I do without the aid of a gifted therapist. Therapy has been a life-line for me over the past three years. I’m strong, but I’m stronger with a support system.
Introducing "Glimmer"
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November 19, 2023
What resources have supported your mental health during challenges as a patient or caregiver? Also your supportive comments help fuel this work too. Thanks!
DID YOU MISS IT?
If you’re new here and wondering, “what happened to this lady?” read:
I started writing this when I was on dialysis. It’s intended to be both memoir and a practical tool to help folks who might be going through something similar or those caregivers and family supporting someone with a challenging diagnosis. NOTE: This is not intended to replace actual medical guidance. Please consult your doctors on your individual challenges and situations. Please talk to your clinicians before adjusting any of your care protocols.
Thank you to Katie McUpton, Dienna D’Olimpio Harada, CC Couchois, Roy Lenn, and Dr. Richard Burwick for your founding level donation.
Thank you for reading Rare Disease Girl. This post is public so feel free to share it.
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