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

hypo

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

exercise

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

look-sick

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

head

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

tired

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

push

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

work-again

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

body-part

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

stronger

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

pain-though

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

generic

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


Find this story helpful? Share it with someone you care about.


Related to Other

5 Common Misconceptions About Special Needs Parents

As the mother of a child with special needs, people often go out of their way to offer me words of encouragement, support and praise. Most of the time, I sincerely appreciate the good intentions behind these confidence builders. Sometimes their words are spot-on. But every once in a while, their comments could not be [...]

48 People With Chronic Illness Who Are Totally 'Faking It'

“But you don’t look sick.” People with chronic and invisible illnesses so often hear this phrase. You’re dressed, out and about and smiling, so you must not actually be in pain, right? Wrong. When we shared the story of Ste Walker, a 24-year-old with Crohn’s disease who posted photos of himself in the hospital after people [...]

When My 6-Year-Old Shared What It's Like to Be Medically Complex

I’m not sure if this list would change depending on the day or how he was feeling, but my son Hartley (who has intestinal failure) saw me writing a piece for The Mighty and decided he wanted to write one, too. I suggested a list of 10 things that describe how he feels being medically [...]

Kids Stand Up to Bus Driver Who Assaulted a Special Needs Student

WARNING: The footage in the video below is disturbing. When a bus driver assaulted a 15-year-old student with special needs in Johnston, Iowa, on Oct. 29, the other children on the bus made sure he was brought to justice. The driver, 61-year-old Robert Scarbrough, became upset when a student named Christian failed to follow seating assignments, [...]