Send Me More Stories About Chronic Illness
Life is full of unwanted advice, from odious mansplainers to outmoded counsel from gently clueless elders. Unfortunately, when you’re chronically ill or disabled, this dial can often feel turned up to 11, as friends and acquaintances bombard you with advice that–while well-meaning–can often feel fairly clueless.
But that’s not always the case. Sometimes, someone actually gives really great advice, and it makes a profound impact on our lives. So for this week’s Community Round-Up, Folks‘s Twitter followers what piece of advice they had received on being disabled or chronically ill that was actually transformative to the way they handled their condition? What follows is some of our community’s best advice.
Also, this week we’re asking our followers: “What’s the most insightful question you’ve been asked about your disability or chronic illness?” We’d love to hear your thoughts, so follow Folks on Twitter (@folksstories) and let us know! We’ll post our best answers next week.
We all get terrible advice, but what's the best tip you've ever received about living with a #chronicillness or #disability ? @MortuaryReport @Imani_Barbarin @BeingCharisBlog @farrahgarland @spwarriortweets @serenebutterfly @Aoiferocksitout @annehenshaw79 @crippledscholar
— @folksstories (@folksstories) February 2, 2018
"Tell your story. No one can tell it for you." https://t.co/avKZG2xafx
— BeingCharis (@BeingCharisBlog) February 3, 2018
One of the most important lessons was to accept my limitations. Not an easy tip of advice to follow but when trying to push against the limitations and doing all the things my brain found too difficult only left me more frustrated and down on myself. By letting go and…
— Rhiann Johns (@serenebutterfly) February 2, 2018
To always advocate for myself as a patient. A lot of doctors try to brush you aside when they don't understand you, and you can't let them. You have to fight to get the care you deserve.
— Spoonie Warrior (@spwarriortweets) February 2, 2018
A friend on here told me to never settle for anything that’s not want I want just because people tell me it’s all I will get bc I’m disabled. @Avg_Rarity
— Crutches&Spice♿️ (@Imani_Barbarin) February 3, 2018
The discomfort others feel when hearing about my pain is not my problem. I have the right to be honest.
— Kat Macfarlane (@KatAMacfarlane) February 3, 2018
To connect w others w chronic illnesses/disabilities!
Thanks to an amazing network of folks, I not only feel less alone in my experience, but I have learned a whole lot. I have a deeper understanding of my own & other conditions, & it allows me better help myself & others.
— Farrah Kaeser (@farrahgarland) February 2, 2018
Having faith in yourself is also really important. So many times and in numerous situations have I believed that I couldn’t do something or wasn’t able to cope with a particular situation but I did. And eventually my self-confidence increased and my world became a little bigger
— Rhiann Johns (@serenebutterfly) February 2, 2018
I heard an Olympic athlete who had become disabled say:
"You have to give up on your old dreams. But you also have to replace them with new ones."— Charlotte Issyvoo (@CIssyvoo) February 3, 2018
To follow that instinct about a diagnosis. To push until the dr starts making sense. To trust your body. For that, I thank my fierce mom.
— Kat Macfarlane (@KatAMacfarlane) February 3, 2018
That I didn't deserve to be treated badly in various ways, just because I had become ill. That I still had worth as a human being. My therapist who treated me shortly after I became ill tried to drill this in me, and I thank her for it. Everything else I learned on my own.
— ???????? Aoife ♿???? (@Aoiferocksitout) February 3, 2018
That we all bring something with us when we enter a relationship. A disability is not a dealbreaker. It is part of the package that is me.
— Kat Macfarlane (@KatAMacfarlane) February 3, 2018
Enjoy each other and the world together. To celebrate our uniqueness and to be PROUD OF THAT. At the end of the day, only our love matters.
— anne henshaw (@annehenshaw79) February 2, 2018
Additional Reporting by Josh Andrew.
