We Love Our ButYouDontLookSick.com Readers!!

 

spoons with a bow
I am so honored to hear from the readers of butyoudontlooksick.com. When I write, or share I never really know how people feel. I don’t know if my articles or essays effect them. When I write I put my emotions, passion and my heart on paper. When our readers, or “spoonies” as we like to call each other, reach out to me it feels amazing. It makes all the time and energy I spend worth it. It fills my soul.

Sometimes I hear from readers via facebook. Sometimes I hear from readers through Twitter.

Recently, I am so grateful to hear from some special “spoonies” and I wanted to share it with you:

The first video I wanted to share is from LA Gozzard. She is a wonderful woman who lives in Canada. She made this video because she felt the words to the song were a perfect way to express what butyoudontlooksick.com is all about… support, community and friendship. Lisa also volunteers for the site and we are so lucky to have her.

This 2nd video was sent in by a reader named chelsea who is also from Canada. (Feeling the Canadian Love!) She made a great video inspired by my essay “The Spoon Theory” I really just love how creative our readers can be!

These are just 2 of many emails, drawings, pictures, etc that people have sent. I just felt I needed to share these 2 with all of you. Thank you to anyone who does anything to support this site, from comments on posts to sharing articles through twitter, facebook, myspace and more!

If you have celebrated The Spoon Theory, or this site in anyway creatively please let us know and you can be featured here too!

If you would like to subscribe to our youtube page you can see more videos like these!

©2019butyoudontlooksick.com
  • mevsm1

    Hi Syler, I thought of you when I saw this:

  • Pamela Woodfield

    I have “liked” the facebook page for this group quite a while back but it will not allow me to post to the wall or for that matter respond or like just about everyone’s posts. I would love to be able to join in with the group discussions. Can u advise me what the problem may be? I know people’s privacy issues on FB may be one answer but why can I not post to the man wall itself? Thank u for your assistance.

  • Anna

    Hello,

    Your spoon theory has inspired me to reach out and explain to my peers more efficiently. I do not have Lupus but CFS, but I think your theory will aid me a lot, in explaining to my peers who are highly skeptical about the pain and fatigue I experience. If you do not mind, I will apply your theory to my classmates. Thank you for this creative idea – I am sure it will and has touched many people and given the motivation to talk to everyone who does not believe them or does not understand them, and not give up in life.

    Thank you so much!

    anna

  • Shira Hadditt

    Your spoon theory touched my heart and soul – my pain is mental – or emotional. I’m bipolar, have been diagnosed for thirty-five years and tho’ I take medication, my constant problem is scheduling – not letting myself get too excited or energetic and then crashing into a funk. With your permission, I’d like to forward your Spoon theory to the members of my bipolar support group. It makes such good sense and seems so much easier to use than a diary or a written list… And that first video about crying – oh, I book- marked it so whenever I feel that awful lump in my throat, I can go there and cry, cry, cry. Thank you, thank you, thank you.

    ps: I don’t look sick either

    shira

  • AlexTaylor

    Hi, Thank you SOOOOO much for your spoon theory. I am a sixteen year old girl with Fibromyalgia and muscle spasms. It makes it hard to explane to my family and harder to explain to my friends.

    Thank you,
    Alex

  • Wow! This is an absolutely awesome site! My daughter and I both have fibromyalgia. The spoon theory is one of the best ways to describe our lives that I’ve seen so far. Thank you so much for an incredible site! Keep up the great work and gentle fibro hugs to you!!!
    Jenny

  • Syler Womack

    My daughter and I both have lupus/fibromyalgia—my concern is mainly for her since I’m in my fifties and have been there/done that—just spent most of my life convinced I was lazy and defective until I got the diagnoses, LOL. But I am sad for her, that she feels so bad every day. The Spoons analogy is the best thing I’ve EVER read—have sent it to her siblings. I WISH YOU WOULD PUBLISH A PAMPHLET CONTAINING THE ENTIRE ARTICLE, so that when I wear a “GOT SPOONS?” garment and someone says “huh?” I can just pull out a pamphlet and GIVE it to them! I would love to order about a hundred of these right off the bat, and I know a lot of other folks would too.
    Also, if you could address Cushings in some way, one of my biggest spoon heroes has a brain tumor where her pit gland should be. It’s a big deal! God bless you for your insight.

    Love,
    Syler

  • Crystal

    I loved the first video. I don’t have Lupus but I have Fibromyalgia. Cry if you want to was perfect and it really brought a much needed smile to my face. Thanks for posting that!

  • I don’t know what to say. I have been able to use the spoon theary to show many people the pain that I have to deal with every day. This is a good ex: I just got a new work coach she is not getting anything that I’m saying. From what I can see she dose not get how work and home all work together. So I’m hopeing that she is going to read it and we will be able to talk about it. So thank you for every thing.

  • merchlleyn

    Thanl you – two little words but I hope that you realise just how much they mean.
    To date I have had 12 years of chronic pain (I have RH A and avascular Athritis compounded by nerve damage as well as cluster headaches). I have always struggled to look the best I can, and have always been aware that many people whisper ‘but she looks so well’ – and I know that when they see me pottering in my beloved garden or at social occasions (I was mayoress) they have wondered if I am really sick….
    They havent seen me drowning half a bottle of oromorph so that I can get through the next few hours of whatever needs doing – nor the kickback I have to suffer over the following few days…………….nor do they see the tears of frustration when despite medication I simply cant do the things I SO want to do -pain and fatiuge dont always show. For my family, my frienda and damit for myself; even now, I grieve for the person I was.

    So thank you for giving me a way to begin to explain how life is for me now – and thanks for the song – I identify withit 100%.

  • Jan Koelsch

    Also as far as the Spoon Theory I have a friend who added a comment. She said that when we are out of spoons at whatever time that occurs, then there are the forks with the tines that have points that create pain as well. So maybe we have a Spoon and Fork Theory. Just a thought.

  • Jan Koelsch

    I have multiple disabilities and am also a breast cancer survivor. Crying is basically a part of life that I guess we all do in public. I love that video “Cry if you want to.” Speaks volumes when you are on medications that reduce or try to eliminate the estrogen/progestrone in your body. Crying becomes something that just happens for no apparent reason.

    Thank you for this site. I am passing it along to others.

  • WOW~ thank you so much for these video’s. Cry if you want to really pulled at me.

  • Betty

    Thank you for sharing both videos. I feel like I can’t move some days and I have lots of energy others. My house is upside down, laundry doesn’t get done, I can hardly go to work, etc. It can be a struggle but I wish we can educate others to understand how it really feels. I’m glad I found this website.

  • Amy Martin

    I have had RSD/CRPS for 7 years now, the burning nerve pain has changed my life as I knew it. I get so discouraged!! Year 6 I tried to commit suicide it only left me in ICU for 5 days. I am trying to be positive and trying to learn how to live with the BURN ~ UGH it is not easy. Maybe if it was not 24/7 it would be easier. Thanks for sharing the videos!

  • Sandy Goodfellow

    the first video just spoke to me!! for i have cried many many times…..alone. angry, bitter and feeling guilty for having my chronic diseases!! thank u for being the person we can turn to when we need that extra courage and love <3. most times ur family will be there 4 u physically but emotionally they have no idea!! it is a daily struggle, and its people like the person who made the video and who contribute to ur site who help me make it thru my days! i will be forever grateful…..<3 <3

  • Sweet Randi

    I don’t have Lupus..but i do have chronic pain..Countless wasted years and too much money to count spent..becoming widowed..with 2 teenage girls..and having to still fine out what is “causing such intense and dibilitating pain?”..Well, a 4th operation is coming up..and THEY think I have Adult Spina Bifida..so after my surgery has healed I must start another path..to find a Doctor that deals with that..Sometimes ..I just need to cry..and I thank you for that song..for it allows me to do just that..Thank you so very much..from my heart..

  • Barbara

    I don’t have Lupus, but I do have Hypothryoidism and Primary Bliary Cirrhosis and I have a lot of the same problems with fatigue and pain. I have used your spoon theory to my friends and family to help them understand.
    Thank you so much for this website….it has been inspirational for me.

  • WOW, really relate to this first song as I was always told by my Mom, that “Big Girls Don’t Cry”….so I grew up not doing so…..thanks….God Bless all the Big Girls in Canada and the U.S surffering w/diseases that don’t show on the outside….but leave you crying on the inside….

  • grant granger

    christine i recall 5 yrs ago when first used the spoon theory…..christine you are a hell of a person….hearts from canada i think of you on occassion….grant g

  • Colleen Atkinson

    Among many other things, I have DID. The first video spoke to me very much. Thank you. Colleen