Thought I'd take the deep plunge into all of the things that are difficult about being a medical and/or mental health advocate online. There are a ton of brilliant, incredible things, too, but sometimes we just need to address all the junk that come along with it. Timestamps for easier listening below!!

(Note: used from YouTube, may be a couple seconds different!)
0:00 — Introduction
3:05 — My history as an online mental/medical health advocate (15yrs!)
5:18 — (Bonus point) Getting people to listen to you/follow/care/etc when you're an advocate for rare or unfamiliar illnesses
7:38 — So. much. unsolicited. advice.
10:18 — Balancing not being "that guy", but also being a helpful friend/advocate to those in need. Helping your community as they help you, but not butting in.
12:28 — The vulnerability/danger of having your illnesses visible in your profile or known publicly
16:27 — Caution to those fresh in their diagnoses (especially trauma) who want to immediately jump into awareness
17:30 — Unique pressures of being an advocate for others vs. just sharing your story
18:50 — Personal, invasive questions!
23:00 — The Catch 22: when these incessant, invasive questions actually KEEP us from ever having those important conversations w/ each other on those very issues
27:02 — Expectation to educate all. the. time.
32:15 — Becoming one-dimensional. Talk about anything other than disability? Unfollow. Basically, "Don't be a person.".
36:36 — Voyeurism and entertainment from your illness. "Be sicker, it's more entertaining for me."
38:34 — THE MOTHER LODE: *THE DISABILITY OLYMPICS*. COMPARISONS!
49:14 -- Guilt for not doing enough, not raising more awareness, not posting enough, educating enough
50:25 -- Backlash of educating TOO much and/or offering corrections. ☠️(But also why misinformation can be especially harmful in these communities.)
58:35 — Being shamed or called a faker/snowflake/liar for having "too many conditions/diagnosis", esp if you have both medical and mental illnesses
1:10:08 — Free labor, doing everyone else's work, not being compensated
1:11:45 — Amassing a large following, being seen as "the representative" for your condition(s), and the paradox of holding great power in your community but then having NONE in the real world
1:16:00 — Surrounded by just so. much. suffering. daily
1:22:30 — Losing so many beautiful people to their illnesses. Such endless grief.
1:28:28 — Outro


✧ Twitter: https://www.twitter.com/rollwthepunches
✧ Quick Disability FAQ:
-I have the trifecta of EDS (Ehlers-Danlos Syndrome, mostly hypermobile, but with some crossover into vascular) / POTS (Postural Orthostatic Tachycardia Syndrome) / MCAS (Mast Cell Activation Syndrome)
-I also have Erythromelalgia (aka "Man on Fire").
-Wheelchair user
-I also have many mental health complications from severe childhood trauma, but will mostly focus on medical disability here.



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I'm Kaalyn, chronic illness warrior, wheelchair bamf and certified hellion for the greater good. Fueled by compassion, hungry for education, and always good for a laugh. Here are my thoughts.