“Spoonies” have heard and do not want to hear the following….

Can you define what an INVISIBLE IlLNESS actually LOOKS like?

Here I describe the spoon theory, and I guess I am what someone would call a “spoonie’ if they knew what it meant.  Personally, I’ve heard them all, and then some. People are well intentioned by stating some of the following, but in reality they just don’t get it. The one I hear the most, is “But you look great”.  Well, I respond, politely, thank you. What were they expecting to see? If they could peel my skin off, maybe it would be different, as everyday is a struggle. No one is around when your have so much mucous draining, that I’m throwing up, or when I look and smell horrible, because of the recent germ, or because I don’t shower as I should. Again, look at the spoon theory.

I made the horrible mistake of saying the same thing to the first person I met with CVID, now I totally regret my thoughts and words. I told her how great she looked, eee-gad, what a dumb, thing that I said. Now I get it, but then I was still trying to figure all of this out.

When your diagnosed with something so rare that even doctors avoid you, it’s kind of hard to accept the new way of thinking, that is your new life. It’s a complete metamorphosis, a complete change in every aspect of ones living.

People just don’t get it. It’s so terribly difficult to explain. I want to raise awareness, but I am just one person. What can I do?

Hopefully, I will find my calling, hopefully I can make that change. Every time I get a great idea to add to my bucket list of raising awareness, I get sick again. All my energy is zapped. Cognitively, I am not able to do what I used to. It’s the new me. The me still in the making.

I sometimes wonder, why was I doomed/destined to have this CVID. I do question it a lot. There are no answers. Maybe someday, I will have an answer though, because every once in a while I get a glimpse, of what my new life means. So onward to the post below adapted from

28 Things NOT to say To a Spoonie

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

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

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 Whitak

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 Wood

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

Read more: http://themighty.com/2015/11/28-things-spoonies-wish-others-would-stop-saying-to-them-1/#ixzz3qXomWIWj

What do you think?