Devon O’Hara - Art & Life

Devon O’Hara - Art & Life Milwaukee-Chicago Artist &
Life with Chronic Illness

09/02/2026

Severe MECFS is so very serious & I really want to start talking about why I am here and why I have been hiding how sick I was because I wasn’t believed. How art spaces became my safe sanctuary to be sick but also seen. How dangerous underdiagnosis and medical gaslighting is. I have so much to say but I need help saying it, so please ask me ANYTHING. I will post trigger warnings before discussing heaving content but I invite everyone to talk about the hard things because I was wasting away in the dark waiting to pass aaay alone. No more of that. I will speak and I will look tired & I will need to pace myself with the story. If anyone has questions. I don’t know where to start 💗
Watercolor + Studio Magic Ty for this comment so I could speak on Speaking

08/31/2026

Today I was told that to continue to fight to get better I need to have a motorized wheelchair. I got this news on my birthday. The idea is to pace my energy. Pacing my energy should grow some capacity back. But it just feels so unfair. I miss dancing. Fun fact: Auditory-Tactile Synesthesia: Specific notes, instruments, or songs cause real physical feelings on or inside the body.

08/31/2026

Mayo Day 11. I have to get a Visibility tracker. I need a motorized wheelchair. I need to never push. In need to stop every time I feel tired so I don’t get more tired. I need to never follow the adhd dopamine. I need to plan ahead. I need boundaries. All the things I need are so simple when you are at baseline, and so impossible when you aren’t. I had hoped to be told I wouldn’t need to bedbound forever and now it is “bed and pacing is your best shot at being able to do some things again”
This is so devastating.
And all of us go through it alone because medicine doesn’t understand ME/CFS.

08/30/2026

Everything changed and it is ok to have feelings about it.

08/29/2026

Day 8 Mayo Clinic was a good start and a crash and burn finish. Did a lot of feeling and unpacking about living my life not doing what I love.

Address

Milwaukee, WI

Website

Alerts

Be the first to know and let us send you an email when Devon O’Hara - Art & Life posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Shortcuts

Share

Category