Advocacy, Invisibility & My Chronic Brain

Advocacy, Invisibility & My Chronic Brain

My old life
(L): Ready to take on the the Capitol. (R): Marching in the rain

“Never judge a book by it’s cover”.

“It’s what’s on the inside that count’s”

“Before you judge someone, walk a mile in their shoes.”

There are dozens of idioms and sayings that have been drilled into us since we are young, but as is the case often in life, putting them into action often falls by the wayside.

As someone with a rare disease that is invisible and a chronic, often debilitating condition that makes it hard for me to function and often confines me to my bed, I understand the importance of making sure that people who may not look like they have an illness do not get overlooked.

It’s one of the reason’s I have become an health care advocate. Because I although you can’t see it by looking at us, that doesn’t mean we should not be seen.

[The video above is for NORD, The National Organization for Rare Diseases. In it I speak briefly about how important it is to interact with your elected officials and to how to start the conversation.]

In addition to fighting for the rare disease community (for more about my rare disease see  Cushings for more about why I go by MedicalOddity see The Medical Oddity), I am excited to be a part of a the brand new eMagazine My Chronic Brain as the Resources & Advocacy Editor.

Man with camera around his neck with baby on his shoulder/ Same man, older now next to young adult woman. Both stand in front of podium in front White House logo and crest.
Grandpa and baby me (l), me and grandpa in the White House Press Room when I took him on tour during my time working there.

I have been passionate about politics, advocacy and government for many years, inspired no doubt by my late grandfather who used to ask a very confused seven year old me if I was paying attention to the senate hearings that were dominating the news at the time. Though the fire to affect change lay dormant for many years as I grew up, it was eventually stoked and became my chosen career path until chronic illness, including Migraine, took it away from me (for more about my journey  with chronic migraine click here).

I grieved the loss of my old life for a long time. I missed working for a cause, and engaging in legislative advocacy. Many of you can probably the relate to the feeling–you miss the old you, the you that could go out without fearing a flare, the you that didn’t cancel plans. I felt the tug of remorse when I looked at my friends that were still working at my old place of employment and I was saddened that I could not participate in marches happening in my community that were happening for causes I believe in.

Now, with My Chronic Brain, I am able to use my knowledge and experience again, to help others who are suffering with Chronic Migraine, and I am able to do it in ways that fit into a life of chronic illness and pain. Being an advocate is something that will always be part of me, rare disease, chronic migraine or not. Click To Tweet

My Chronic Brain is an online magazine dedicated to helping and connecting those with Chronic Migraine. In addition to the website and quarterly issues, MCB is the co-host of #MigraineChat on Twitter, held on the first Monday of the month from 1-2pm ET (follow @beth_morton & @mychronicbrain to participate and don’t forget to use the hashtag #migrainechat). 

MCB LogoThe first edition of My Chronic Brain will be released on January 15th. Be sure to visit the website and sign up for alerts for future editions. 

And whatever your cause, whatever your voice, keep on speaking up. The world needs you. Click To Tweet

 

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