28 Things Spoonies Wish Others Would Stop Saying to Them

In 2003 writer Christine Miserandino published an article on her blog “But You Don’t Look Sick” called “The Spoon Theory.” In the post, she recalled a dinner conversation where she explained to her roommate what living with lupus was like. Miserandino used spoons to measure her energy level and ability to carry out daily tasks. After the article was posted, many individuals with chronic illnesses like lupus began using the term “spoonie” to identify themselves.

Natalie van Scheltinga, who has Hashimoto’s thyroid disease and fibromyalgia, started the Facebook page “Spoonies for Life” in February. It’s become a community for spoonies everywhere to connect and share their stories. “We can find some comfort with each other and know we are not alone,” van Scheltinga told The Mighty.

In addition to lupus and fibromyalgia, chronic illnesses include Lyme disease, rheumatoid arthritis, Crohn’s disease and diabetes, among others. Many chronic illnesses are considered invisible and therefore difficult for others to understand. This, unfortunately, leads to some awkward, uncomfortable, sometimes downright insulting moments.

So, The Mighty teamed up with Spoonies for Life and asked their community what they wish others would stop saying to them with regard to their chronic illness. Here’s what they had to say:

1. “Stop being a hypochondriac.” — Amanda Ward

2. “If you eat all organic foods and a balanced diet, you won’t need to take medications.” — Caroline Freeze Shank

3. “Get more exercise.” — Betina Jackson

4. “Oh I know someone who had that, but they’re fine now!” — Nina Leach

5. “Why don’t you want to go out?” — Connie Elliott

6. “You don’t look sick.” — Jessica Lynn Palombo

7. “Have you tried thinking positively?” — Amorie Spangenberg

8. “You were home all day… so what did you actually do around the house?” — Christie Pollock Taylor

9. “You can’t feel bad all the time. It must be in your head…” — Norma Conti Mcdonald

10. “I know how you feel.” — Estelle de Mol

11. “Oh, but you’re too young for that.” — Megan Geromichalos

12. “My 4-year-old daughter often says to me, ‘Mommy, I wish you weren’t so tired all the time.’ That kills me.” — Liz Brown Culver

13. “If you’d just lose weight your problems will go away.” — Paula Cohen

14. “When older people say, ‘Oh, you have achy joints? Wait ’til your my age!’” — Sunny Rene Banks

15. “Just push through it.” — Heather Lauren

16. “Have you asked your doctor for better pain meds?” — Norada Thomas

17. “There’s always something wrong with you.” — Nichole Mack

18. “From my husband: ‘When do you think you’ll be ready to work again?’ (Never)” — Penny Yale Wood

19. “Well, you do take a lot of pills!” — Sandra Beutels

20. “You get a disability check? Why? You look fine.” — Renee Thomas

21. “Oh, I hurt too! My (insert body part) is killing me.” — Kris Whitaker

22. “I’ve just been down with a flu, so I know!” — Silje Liv

23. “I had someone who is supposed to be a friend say, ‘You are stronger than you think.’ This really made me ill. As a spoonie we all know the struggle, fighting day after day for years. We are strong but they will never know our fight. Some days I think I will never survive, when every part of my body hurts.” — Marsha McMahan

24. “I saw you out of your wheelchair yesterday, so why do you need it today?” — Joy Quinn

25. “You should go off all of your meds and detox.” — Veronica Belback

26. “You don’t look like you’re in pain though.” — Paula Woods

27. “As someone with epilepsy I hate when people tell me, ‘Oh I understand, my dog has seizures.’ While I love my dogs, I do not like my struggles being compared to that of a dog.” — Keti Theon Kharis

28. “Have you tried (insert treatment they found in a generic internet search)?” — Sarah Leanne

What would you add to this list? What would you rather others say instead? Let us know in the comment section below.