Sunday, 31 May 2015

Chronic Illness Community

As i write this it's 2am, a mixture of pain / sickness are keeping me awake and my mind is racing at about a million miles a minute.

One thing I've been thinking a lot about lately is the chronic illness community. Lately its really grown in popularity, I'm not saying illness is a popular thing or a trend, but more and more people are talking about and sharing their experiences.

Of course as someone who blogs and vlogs about their life being ill all the time, I can hardly say it's awful, that it's a taboo subject no one should ever mention, surely that'd put me in line for hypocrite of the year award. However I do think people need to be a little bit more aware of what they're posting or saying.

Log on to instagram and the community of spoonies (a term often used by the chronically ill) is massive, hundreds of thousands strong, all posting pictures, detailing their day, hospital stays, asking advice , updates on treatment etc. Of course others then double tap, comment sending well wishes, answering questions etc. I do it myself, so of course I understand how great it feels, to be part of this community that understands what your going through, what your life is like. In my experience illness can make you feel alone. On instagram your'e never alone. No matter what time of day it is you're never alone.



But these communities also have their downsides. People seem to forget that everything we put on the internet is an edited version of whats real. You only see what I want you to see. I may upload a picture of myself happy hanging out with family, you don't see pictures of the painkillers I had to take before hand, that I slept for 2 days before and 2 days after, or that I had a seizure and wet myself an hour later the picture was taken.

I get alot of messages asking about medications, people comparing themselves and their own situation to mine. I see the same on many others posts "how come your dr prescribes that? Mine won't give it to me"

I also encounter a few people who seem to be turning the community into a competition of who's sicker. That's not what this community is about.

oh and blatant cyber bullying.

Try to remember the following and the chronic illness community will be a much better place.


  • Don't ask for or give advice on medications / treatments, what works for you could be dangerous to someone else. Encourage speaking to a medical professional
  • Dont compare yourself to others
  • Be careful taking pics of meds or prescriptions, your address or personal info, your just asking for your ID or meds to be stolen
  • Don't have anything nice to say, don't bother
  • illness isn't a competition, we're all in a different race
  • If you think you're having a medical emergency call an ambulance don't wait around for social media advice. Not only is that stupid, it makes others feel guilty and helpless.
  • Try to take everything with a pinch of salt, I know we become attached to internet friends, but everything we see and read is only part of a story. Other peoples problems are NOT your problem.
Sorry if this post offends or upsets anyone, that's not my intention. As a whole I love the spoonie community and it's been a huge part of my life. 

Spoonie Communities exist on every social media platform and across the internet. I was using instagram as an example.





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Lots of love
Charlotte
xxx



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