When Doctors Don't Know

08/03/2026

Zebras, this is what undiagnosed Mast Cell/EDS did in my life over the last 5 years! Making a solid comeback now armed with proper knowledge but what was your journey like. Did you have to get super sick before anybody would listen? Did they send you to psych? Gaslighting? How did you turn it around?

08/01/2026

37K Followers, 1,128 Following, 825 Posts - See Instagram photos and videos from Lilian Holm ()

07/31/2026

Happy Friday fellow zebras. Long time no post, I feel like I spend most of my time reading and researching and commenting as needed or applicable on others posts but rarely share here. For those of you who aren’t familiar with my story, this is me! If interested my MCAS/EDS journey, let me know and I’ll be happy to send you my story. I wrote my journey primarily for my nurses, through misdiagnoses and gaslighting to everything in between. At my worst I was down from an average weight of 150lbs to a very measly 97lbs. Have a great weekend everybody!

04/12/2026

Hey all, if you are looking for a reliable and knowledgeable source for EDS, MCAS, POTS, and all related, our daughters grew up together and I consider her a very reliable and knowledgeable resource if you are searching for guidance or help or both!

37K Followers, 1,128 Following, 825 Posts - See Instagram photos and videos from Lilian Holm ()

03/01/2026

02/03/2026

Strange time of year to ask, but looking forward to Spring. Total beach bum here, and last year the Sun and heat made my MCAS flare every time I tried to be outside. Anybody else? Any tips? How do you deal with summer weather that you love, and a body that doesn’t want you outside?

01/14/2026

As somebody struggling with doctors or a diagnosis, or even your diagnosed condition, do you document everything? There are photos from pre diagnosis when Docs kept telling me it was in my head!

01/11/2026

Where do you feel you get the best help/most knowledgeable care during a flare? ER? Urgent Care? Treating Physician? Self/Home?