A Perfectly Broken Family

I'll never forget, it was my 12th Birthday getting my first blood draw after suffering for a year and a half, confusing local doctors what exactly was wrong with me. Finally after 2 weeks, I was granted a late Birthday wish (not really). I was officially diagnosed with Crohn's disease. At last, I was welcomed into to the world of fellow Crohnies and Spoonies, yet somehow not very enthusiastic about it at the time. After all, I was 12.

There, my life progressed through some of life's toughest moments - living in the constant "up-and-down" lifestyle that comes with having an auto-immune disease. At this moment, I am 36 years old. I didn't know, nor did I expect, some of the challenges I was going to face following my diagnosis. But I also didn't know about another world that was about to be opened up to me going forward. As they say, there's a "blessing in disguise" in whatever we're facing.

Whether you're a fellow Spoonie or the loved one of a fellow Spoonie, each of us are affected by living under that title - Spoonie.

(For those who aren't familiar with the Spoonie 🥄 analogy, it was created by writer and blogger, Christine Miserandino. She used it to translate how it felt to have an autoimmune disease on a daily basis, specifically Lupus in her case. She explained it to her friend by giving her a handful of spoons, which represented the measurement of units of energy she spends with each and every activity on a daily basis, and how a chronic illness forces those with an autoimmune disease to plan out their days and actions in advance. Most normal health-able bodied people, for example, have 12 spoons a day. While it may take them 1 spoon (energy) to get ready in the morning, it might take someone with an autoimmune disease 4 spoons for the same task. Sometimes those with autoimmune diseases also get 12 spoons of energy in a day, but usually we get much less, maybe starting with 7 spoons (or even less than that) to get through a day. And when you are short a few spoons one day, a friend or loved one helps that chronic individual out by "giving" them some extra spoons to help them through a day. Thus, the term 'Spoonie' - someone(s) with an autoimmune disease.)

Now that we're all caught up on a history lesson, let's continue the blog, shall we?!

You know when you're first diagnosed with an autoimmune disease, after already feeling terrible, you're overwhelmed with the idea, "I have a disease that experts deem "incurable." It's a lot to take in.

Doctors or Specialists don't always tell you the kind of road you may face, but there's also something else you might not have known that comes with having an autoimmune sickness...and that's family...a SPOONIE Family.

Your immediate family members/blood relatives/spouse/significant other and friends may be there for you, however, for some, they don't always have those people to support them. I've been fortunate to have an amazing family, an amazing fiancé and her family, and my friends to help carry my burdens (share their "Spoons" if you will). But there's also another family that will always be there for you and that's the Spoonie Community.

When I was diagnosed, I knew it wasn't going to be easy. But something I found was that there is a community, or family, if you will, that has always been there for me - and that's the Spoonie community. I've found that fellow Spoonies want to help and care about one another, no matter the differences. There's such a connection in suffering. Suffering may bring pain but in that pain there can be purpose. And maybe that purpose is to help someone else, to let them know you've been through something similar, something equally difficult more than a time or two and that you're still here fighting...and most importantly, alive.

There's great encouragement in finding support with the Spoonie family/community. Relatability and being able to be understood by others who share similar struggles is a way to find courage, answers and healing.

This isn't limited to those actually suffering with an autoimmune disease, this includes fellow loved ones who have a loved one suffering with a chronic illness. I think about my fiancé, who I welcomed to the Spoonie family after she has taken care of me and loved me through thick and thin. I think about my parents, my brother and loved ones who are also always there no matter what happens. I can count on all of them, always. And I think about my Spoonie family, who I can always count on to be there to encourage me, help me, support me, pray for me, and loan me spoons 🥄🥄🥄 when I need them the most, just like my loved ones would do.

If you're suffering, down and out,  just know we're here for you. Always. Know you're not alone. Know you're going to be ok. And to know that it's ok to not be ok sometimes. We're all human. That's what makes us flawed but perfect all at the same time.

I welcome all fellow Spoonies and loved ones of Spoonies (yes, you're part of the Spoonie family too) to join Shelley and I as we talk about real life experiences. Some that bring joy, some that will bring pain. There will be many good memories but some also difficult ones. I've been holding back on things and stories, and experiences that I've wrestled with for over 20 years now. But I'm still here, thanks to all my families, including my Spoonies. And I hope my experiences and my pain can create purpose for us to help you, and others!

If you need help finding your Spoonie Family, please look on social media. They're all over the internet and ready to help you. Be sure to use the hashtag #spoonie. People will find you, or you will find them. Plain and simple.

Before I sign off here, I just want to say hang in there, we're all in this together. Don't give up. I'm still here, others are still here, so keep fighting the good fight. 

And lastly.....

Welcome to the Family. 

You're friend & family,

Fork Knife and Spoonies🥄