Editor’s Choice: What NOT to Ask, Sorry Not Sorry

editor's choice

Welcome to this week’s Editor’s Choice!

When you have a rare disease like dystonia, you come across a ton of different reactions from people in regards to your illness. One of our PW Contributors tells us what not to ask when you know someone suffering with chronic illness. We also have a piece from PW Contributor Chelsea, on being unapologetic about her rare disease.

Lastly, we have a post on leading a normal life with rare disease and TLC’s “Two in a Million” representing rare!

We hope you enjoy this week’s Editor’s Choice!




Don’t Ask: Does it Work?

PW Contributor Tom Seaman lives with dystonia. Here, he talks about the importance of understanding treatments as it relates to chronic illnesses.

Though you might not try to come off clueless or offensive when asking for an update on someone’s disease, tact is important when starting that conversation!

What Do You Think About “Patients Can Live a Normal Life”?

Pamphlets that are handed out at doctor’s offices or certain websites can be misleading about what life is like with rare disease.

Read more here about this blogger’s take on “leading a normal life” with chronic illness.


Sorry Not Sorry

PW Contributor Chelsea has been on her search for a diagnosis for a long time.

Read her article on not being sorry for particular things in her rare disease life.

tv remote

‘Two in A Million’ on TLC Represents Rare Disease

We LOVE it when shows represent the rare community.

This TLC show will give you hope that there are others out there like you, and producers wanting to bring you together.




Have something to say? Comment here...