More on me? Aw shucks. I couldn’t possibly…

Feel free to comment below with relevant links for rare and chronic illness! I’ve collected a smattering of resources I hope you’ll find useful, but I’m only one person and there is so much internet. And it’s not like I don’t WANT to share your blog. It’s not like I looked at your link and thought, “NO. Not meeting my standards. Banished.” I was probably just Pinteresting when I was supposed to be researching. So don’t be shy now, ya’ hear?


Invisible Illness:

Rare Disease Organizations

Primary Immunodeficiency Disease 

Postural Orthostatic Tachycardia Syndrome and Dysautonomia 

Other Resources

4 thoughts on “Resources

    • I went through a time, and still sort of am, slaiimr to what you are saying. I felt I needed to always be the fighter and never show how emotionally tolling being sick and always fighting was. If I felt bad for myself, I immediately felt guilty because there are people out there with cancer. I thought by expressing my anger, grief, pain, and sadness to anyone but my pillow at night, I’d be worrying and letting down those I love. I’ve found it just isn’t true! I wouldn’t expect anyone else in this situation to always be a fighter and never show any painful emotions, so why do I expect it of myself? Also, I was diagnosed in less than a month once we realized POTS was what I probably had. I think it’s horrible it is taking this long for you to get diagnosed!

  1. Just wanted to say Thanks Much for including my blog in your list. It was a nice surprise 🙂

  2. Great resources! Feel free to share my blog –

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