Tag Archives: support groups

Community Unity Opportunity.

I’ll be honest, I’m not at all grateful for illness- especially illness of the chronic variety. Fortunately, I’m not the type who believes that God made me sick to teach me some divine lesson, so I don’t feel any compulsion to be thankful for this portion of my life. Having said that, I realize that the longer I continue my journey of life with chronic illness, the more I am grateful for community. Before my symptoms reached a life altering level, I had no idea what it meant to be surrounded by support from people I had never met.
While I consider myself very much an introvert now, for most of my life I’ve been surrounded by people. I’ve been a participant in church groups and choirs, committees and classes, clubs and organizations. Now, my body can’t keep up with all those memberships. It requires a day’s preparation to make it to one event- forget trying multiple events in a day. And while that much socialization would be exhausting for me now, I still long to be around people who understand me. Now don’t misunderstand. I have wonderful family and friends. My husband handled my illness far better than I could have asked. My Mom still texts me first thing every morning to see how I slept and talks to me at night to hear about my day. I have great physical support- but I can always use more.
The first months of being sick/ disabled were the worst. I was too ashamed to reach out to friends who knew me pre-illness and too scared to reach out to new people. I thought the idea of joining online support groups was ridiculous. What kind of loser needs people she’s never met to help her navigate life? This kind of loser. Me. As I started looking for groups and forums for those living with chronic illness, I found people who could understand. I found kindness and compassion and empathy. I found people who didn’t think I was weird because I was too tired to both shower before an event and then actually attend that event. I discovered others who were living with the shame of not being able to keep their house as organized as they’d like. I even found friends who understood how it felt to decide not to have children- yet be simultaneously heartbroken by that decision.
Without my communities of online friends, I would have never discovered blogging or felt compelled to begin my own chronic illness communities both online and in person. I credit those friends who pulled me through the beginning of this awfulness with all that Crazy, Chronic Life has become. But, it occurs to me that I’ve yet to make an exhaustive list of all the ways you can participate in the CCL community. If there’s a community that interests you, join us. I promise; we’ll be glad to have you.

Crazy, Chronic Life- FB page– This is the main Facebook page where all new blogs and CCL updates post first. I also use this page for live videos and polls.

Facebook Crazy, Chronic Life Support Group– This group is for those with chronic illness- or their caregivers who may seek to understand more. Join us contests, silliness, and all the support you can handle.

Taylor County Public Library- Chronic Illness Support Group– If you live in or near Campbellsville, Kentucky, come join the in person support group and meet some of the (in my opinion) coolest people in Campbellsville!

Sorry for posting twice today. I’m trying to get all my “blog keeping” tasks caught up before I leave for Nashville.

Peace, love, and health, friends.

Advertisements

The Interesting “Side Effect” of Being Chronically Ill

When you become sick you enter into a secret world you never imagined you would even visit. You enter a world where “dress up days” are for doctors’ appointments, and showers are a luxury rather than a routine. You trade fashionable clothes for pajamas. Girls’ (or Guys’) Night Out is exchanged for a snuggle night with your fur baby and Netflix. (Let’s all take a collective moment to appreciate all that binge watching has brought to our lives . . .)

And all of that . . . well, it sort of stinks. I like yoga pants as much as the next 30 something, but it would be super nice if I were wearing them because I like the look rather than because jeans will cause my hip to dislocate. There are a lot of unfortunate tradeoffs when your life deters into the world of illness, and I won’t lie- I’m typically not a fan of all this life offers.

However, there is one super fantastic thing that happens when you’re chronically ill. Even though I would gladly exchange health for this perk, I’m glad it exists. It’s basically the only redeeming quality. When you are chronically ill . . . you get an extra family. In my first few days and weeks of realizing that illness had become a part of my life, I had never been lonelier. It wasn’t until I saw the phrase “chronic illness” that I realized I had a new identity. I was chronically ill. Armed with that phrase, I began searching for “my people.” Thank God for social media. Thank all that is good and holy that I found Facebook groups for the chronically ill. You know what? No one tells you when you become chronically ill that you inherit an entire family of supporters through Facebook, IG, and Twitter.

I get it. I know there is more to life than social media. I understand the risks of spending your life connected to social media rather than the life that is going on around you. However, the life that is going on around me isn’t terribly glamorous. Today, I’ve kept up with my medicine schedule, taken injections, and worried about my bladder pacemaker. Does that sound like something you wouldn’t want to be distracted from? Yeah, I didn’t think so. Don’t get me wrong. I have a wonderful family and friends. They do all they can to support me. However, it doesn’t change the fact that they haven’t traveled this exact road of illness that I’m experiencing.

Why does it matter? A few months ago I posted to one of my chronic illness support groups that I felt discouraged. I explained to them that I had been trying to go to the gym, and I was accumulating far more injuries than progress. You know what? They GOT it. My online family reassured me that effort counts. They told me success stories- as well as their stories of dismal failures. Of course, every human has experienced health gains and fails, but only the chronic illness community can truly understand the struggle. Only my chronic illness family understands the pain of doing your best and having a body that just won’t cooperate. In that moment- in so many moments- having someone to say, “Yeah, I feel your pain” means infinitely more than advice.

In so many other instances, I’ve seen friends who had a daunting diagnosis, a failed relationship, or a traumatic doctor’s office experience receive support and love from dozens of people who have never met them. We support each other. We empathize. We ultimately strive to hold each other in this painful game of life as well as possible. For that, I am beyond grateful.

Years ago, before my health struggle became blatant, I would have told you I have all the friend and family support I need. I would have told you that it’s impossible to trust friends you have never met face to face. I would have believed that face to face encounters matter more than the relationships we forge through online communities. To some degree, I still believe that. However, I am forever grateful that I have an online family that understands the “sick life.” I love that people I have never met know that I love Disney more than any adult should, so they tag me into cute Disney memes. I appreciate that my odd obsession for sloths hasn’t gone unnoticed by my Facebook friends. I am grateful that I exist in a world that thinks I’m “normal.” The real world thinks I’m little more than the victim of unfortunate circumstances; my online chronic illness family knows that I’m doing my best. They see my struggle because it mirrors their own situation. They know I’m doing my best- even when that means I’m stuck on the couch for days.

Chronic illness bites. It’s a life sentence without parole that I wouldn’t wish on anyone. However, there is one wonderful side effect- online support. It exists, and it makes my days and nights more tolerable. As much as I appreciate my online family, I am fairly confident I’m not the only one. I’m guessing that throughout the community of chronically ill people, there are many who have benefited from the love and support of their new online family. That . . . well, that restores my faith in this chronic life. We have each other to lean on, and I know beyond a shadow of a doubt that really matters.

Have I mentioned that my online family is also great at suggesting binge worthy shows from Netflix? Yeah, that makes them awesome too.

Peace, love, and health, friends. 

Want more Crazy, Chronic Life? The blog has been compiled into an e-book via Amazon. Check it out, please! 💙  Newly Wed and Stuck in Bed- Chronic Illness, You Don’t Know ME!Click here to check it out!