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Issue #263: When Misinformation is Disseminated It Undoes Some of the Advocacy Already Done & Creating a Safe and Inviting Space at Home That You Can Always Enjoy Being in

Issue 263: When Misinformation is Disseminated It Undoes Some of the Advocacy Already Done & Creating a Safe and Inviting Space at Home That You Can Always Enjoy Being in

Friday, 30 April 2021. Issue #263.

In This Issue:

  1. When misinformation is disseminated it further stigmatises IBD and chronic illnesses, undoing some of the advocacy work done. This can be especially harmful when it comes from within the chronic illness community itself.
  2. Creating a safe and inviting space at home in which you can always enjoy being in.
  3. The decision to not only persevere, but also to advocate for epilepsy and help others as a chronic illness patient.
  4. One of the most frustrating things about invisible illness is the fact that it’s unseen, and therefore easily dismissed or downplayed when you do bring up your experiences with others.
  5. It could take a few weeks to get into a healthier sleep routine, but don’t beat yourself up over it. Sometimes you also need to listen to what your body says.
  6. Education is just as important for the disabled as it is for the able-bodied. Yet schools are notoriously inaccessible, leading to exclusion for progress.
  7. If there’s anything I’ve learned from dating with chronic illness, it is to have some self-respect. If they treated me with contempt or blame, then I would make the decision to leave them.
  8. Patients never rest well in hospitals, with the plastic bedsheets, shared toilets and bland, mushy food.
  9. When your trauma is hard to consolidate and verbalise as it is a series of many events and impacts, including being raised by a single mother with undiagnosed schizophrenia and bipolar disorder.
  10. The story of Rosemary Kennedy (JFK’s sister), who was disabled and lobotomised; the nurse was so horrified she left nursing forever.

*Note: This article is meant for educational purposes, and is based on each person’s individual experiences and circumstances. It is not to be substituted for medical advice. Please consult your own doctor before changing or adding new treatment protocols.

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2 comments

  • Avatar of Max Russell

    A collection of bold tweets by some people. Chronic illness can be difficult to conquer when misinformation is rampant. As you rightly said, it undoes the work of many health advocates and researchers. People need to stop looking for medical advice on the internet.

    • Avatar of Sheryl Chan

      Hi Max, yes agreed. We push one step forward and then misinformation erases everything and pollutes things even more. It’s sad and frustrating, but all we can do is keep trying!

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