Finding a “Home” of My Own

 

The year 2010 was a big year for me, disease-wise. I was going about my lonely, diseased business. I had been sick since 1995, diagnosed in 2007 and getting treatments for 3 years. At the very end of 2009, I was forced to switch insurance companies. The new insurance company denied my treatments for 3 months. I was devastated. I was frantic. I was worried and I was also very, very sick. I was finally allowed to restart treatment again. But after that desperate time of not knowing if I’d ever receive treatment again, I decided I could not go through this alone. So, I started looking.

I was looking everywhere. I was searching the internet for clues. I was hoping to find anyone who was like me, who could relate. I even had met 1 or 2 other patients like me at my physician’s office.  Completely out of the blue and unsolicited, I began contacting them. I could not go through this alone any longer. I could not, and I would not.

I had been avoiding social networking like the plague. My husband and I discussed it and decided that all of it was just a big time suck. It was too fraught with issues. What would happen if we took that path? Would we friend exes? Would we share our passwords with each other? In the end, we thought it better just to not make profiles and stay out of the fray. Why borrow trouble?

I did find one organization. It had a message board for people like me and wasn’t very big. However, it seemed difficult to meet people. At this site, people just mainly posted questions and waited for others to answer. I didn’t feel the connection I was seeking. Yes, there were others like me there, but I still somehow felt alone.

I did end up meeting a few other patients while visiting that site, and they are the ones who showed me my promised land. In one conversation, they introduced me to Facebook, The Spoon Theory, and Butyoudontlooksick.com. I even eventually poked around and found Twitter on my own. In short, I was home. Finally.

Finally I had a place where others understood. They listened. They cared. As I like to say, they “got it”. Suddenly, I was connected in a way I never could have imagined. As soon as I read “The Spoon Theory” I forwarded it to all of my friends and family. Their responses, needless to say, were underwhelming. It did not matter. I knew instantly that I was a Spoonie and that I belonged unconditionally.

I carefully went about crafting my online profiles. I added my Spoonie Twibbons. I wanted it communicated very clearly to everyone who friended or followed me that this is who I was; this was what I was about. I tried on my profiles to keep my focus and emphasis on my condition. This is the true reason of why I’m currently social networking. These, as we’ve so eloquently read before, are my “friends in the box”.

Soon, the crude tools I had were not keeping up well enough with my Spoonie family. My desktop in my not-all-that-comfortable home office, my work laptop, and my voice-only cell phone were not keeping me connected enough. My ever supportive husband upgraded me to a smart phone and a netbook by my bed. I was now never alone.

I think it should be said that online, I’m not that vocal. Sure, I retweet or “like” things from time to time, but I’m not much of a poster. But I am always there, reading, commiserating, praying, hoping for the best for all of us….that we all so much deserve. I’m constantly grateful for all of us and for this forum. I’m thankful that we have a place to go and not feel alone.

2010 was the year I found my home. 2011 is the year I’ll truly get settled in and really enjoy it. I hope you’ll join me there. Everybody’s welcome.

 

Article written by Staff Writer, Kelly Clardy

 

Kelly lives in Atlanta with her husband and kitty. She developed PIDD in 1995, went undiagnosed until 2007, and has been receiving IVIG ever since. She also has: capillary hemangioma of the colon, chronic anemia, Hashimotos, insulin resistance, and a host of other diagnosis. By day, she’s a Senior Project Coordinator and a Zebra. She can be found lurking on twitter, @collie1013 and on Facebook at Kelly Jaeckle Clardy.

©2024butyoudontlooksick.com
  • Dana Bennett

    Kelly, you write so well and expressed your journey in such a straightforward way. I just read The Spoon Theory tonight because it was posted on the Facebook page on PSC (primary sclerosing cholangitis), a liver disease I’ve been diagnosed with since 2006. The Spoon Theory so accurately describes how I feel about my days, my losses of independence, and even what it costs me – in spoons – to shower and wash my hair. I will be thinking and writing about spoons a lot in the next several days, weeks. Thank you for sharing your story of finding home on this website, FB, tweeting. Thank you, thank you, thank you. You’ve given me courage and hope.

  • kalanamama

    SO true it made my skin tingle, wow. This is so empowering, comforting and community creating, thank you bless you hear you.

  • Hawkfyre

    Thanks for your insight. I hope there are others out there that find out that not ALL social networking is bad for you. If you be safe and realistic not friending the world, or exes and bullies of the past, you can get some comfort from others who unfortunately also have to do networking from home due to illnesses and the rarity of some of those conditions too.
    Sorry you have to be here, but glad you are :))). I think I’ve heard that before somewhere ……

  • Prairie

    Thank you for posting this. I’m glad you found the support and community you need.

    I had the same feelings when I finally found BYDLS and read the spoon theory.

    I’ve been diagnosed, but I’m still struggling for effective treatment and further diagnoses. I know I have more than FM going on, and I’m working to get that sorted out.

    I’m so thankful for BYDLS, the communities I’ve found, and the support and encouragement I get from the understanding friends and family members. We are not alone.

  • Colleen

    Kelly, that was lovely of you to share that part of your life to us. A big step. I appreciated it because I also have diseases that were unknown to us back in the 60’s, 70’s & mid 80’s.

    Anyway, I know it makes me a Spoonie and I’m proud of the people who will share their stories of inspiration. Sometimes you think, what’s the use and then someone like you writes on a blog and all of a sudden, you know what the use is.

    Thanks sweetie. We all should be so brave and straightforward.

    God bless you Kelly.

    Colleen

  • *hugs*

    Your story touched me very much. I had been a part of other forums before but never felt as much at home as I do here on the Spoonie site 🙂

    I am proud to be a Spoonie too and have Twibbons on my facebook page 🙂

    The response from most of my friends and family was underwhelming too but I can’t blame them for not understanding. I actually wouldn’t wish the complete understanding of having an invisible illness on anyone.

    There are some friends that I have however (and God bless them) that are supportive of it and ask me how my “spoon level” is doing before we go do something.

    🙂

    The internet makes me feel connected to the outside world that I don’t get to see much of anymore and I am so thankful for it.

    Thanks for sharing your story!

  • Lisa Terry

    Kelly, such a beautiful and well written article. I am so happy that you have found a home. When you have been given the gift of a home finding others who don’t have one and sharing yours with them is a wonderful way to pay it forward.
    Your husband sounds very loving and supportive of you. I like that the two of you discuss things and make decisions that are best suited for your relationship.
    I look forward to reading more of your articles in the future!

  • Teri Kennedy

    Exactly Kelly! I share this with all I meet! We are not alone that’s for sure! Good job!

  • “Would we friend exes?” If that’s a concern, then your relationship has bigger problems than the internet! My ex wanted my password but refused to give me his — that told me he had something to hide, and is why he’s an ex. Since then, been in a 10-year relationship, all we know about each other’s passwords is that they don’t appear in a dictionary, but have never asked for specifics. Complete trust, we don’t need to spy on each other.

  • Sandy

    Kelly, I know exactly how you feel with the underwhelming response from family and friends! I too discovered in 2010 the BYDLS family and read the spoon theory for the first time. I got so excited by the way it perfectly described my chain of thought that I sent it out to all my family and friends. Not a one of them ever even commented on it, yeah or nay. My great husband did read and understand it and now we communicate in spoonie talk! Sorry dear, I am down to my last spoon tonight and don’t think going out to eat would be a wise thing! And he understands! But he is the only one so needless to say I was very disappointed. Thank goodness for my online friends here at BYDLS!!! I have Systemic Lupus, Sjogren’s disease, Reynauds and Fibromyalgia. Many days are spent in bed so I can sympathize and empathize. Welcome to the circle of friends where everyone is accepted just as they are! Hope 2011 is a great year for you!

  • Ann B

    Thank you for sharing. My families response to the spoon theory hasn’t been great either. They say they understand but they don’t and they rip me apart for being lazy and not that sick. I too love the online community I have found for support. Without it I would truly be alone.

  • Welcome Kelly!! I’m a fellow Spoonie with Hashimotos, epilepsy and Celiac 🙂

  • Judy

    Kelly, your letter really “hit the spot” with me. I usually don’t have time to read these everyday..wonder why? However, I am glad I did this morning. Just when I was feeling so friendless, I realized that”my friends are in the box”. (a zillion of them!)

    Thanks for the reminder, Judy spoonie.

  • Kimberly Casey

    I feel exactly, and I mean EXACTLY the same way. This is the only place where I know I will be understood 100%. This is home. My hugs and thanks to you all. My family in the box.

  • Carolann Baker (sleepyscarecrow)

    Wow! I sso totally related to your post. I;ve been lurking online for 3 years and have recently gotten to the point that I have to reach out or die. I’m so alone! No transportation, can’t drive, very few friends, no support. I’ve been sick for a long time diagnosed with Narcolepsy w/ cataplexy 3 years ago, Extreme EDS, Fibromyalgia and a few others. It has robbed me of my life! I have to try to go get electric now. I;m out.

  • Christine W

    Wonderful article, way to go Kelly!!! Similar story here, also became sick around 1995 & finally got a diagnoses in 2008, this is a great site the Christine has created for all of us spoonies!

  • Stacey

    Excellent! Glad you found your home!

    I too was excited when reading ‘The Spoon Theory’ and passed it out to my family and friends. The response I got was underwhelming as well. Some even refused to read it. Its hard when you feel that noone understands you…that is why this site is so important to many of us!

    Hope you enjoy your new home!!!

  • Julie Van Norman

    Thank you for sharing this, very informative. Agree the internet is not always a good place to be. But BYDLS is a great place to be part of!
    Love all Spoonies!!!!!

  • Wow, I share the same story! I found this lovely place called BYDLS, and am gaining spoonie friends by the day. 2010 Ibecame a spoonie. Hopefully in 2011 I can find a diagnosis. Kudos to you for finding your home where people like you and I just, as you said, “get it.”

    I wish you a plethora of spoons for the year to come. You have a wonderful cantor in your writing and I look forward to reading more of your articles and stories.

    ***If any spoonies are looking to reach out to a friend online, please find me on facebook by searching for Miranda Stein from New York. Just mention you are a spoonie in the friend request.***

  • Leigh Moss

    Awesome job Kelly!!!

  • Collie1013

    thanks, Steph! it’s surreal! so excited!

  • Steph

    Heartfelt and simply awesome. Great job Kelly!