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3 Tips to Finding Your Chronic Illness Tribe

                                                    First, My Story...

     Everyone longs for a sense of community and belonging.  Living with a chronic illness, especially as a teen and young adult, I found the social isolation harder to endure than all of the physical effects of my illness.

     I first got really sick when I was seventeen, and I just about fell off the face of the earth.  I stopped showing up at school.  I couldn't go out on the weekends.  I was in so much pain I couldn't even bear a phone conversation, so I ignored phone calls.  Every doctor I saw had absolutely no idea what was wrong with me and most of them had very psychologically damaging things to say to me (see my blog post Doctors Suck! for more info).  Therefore, I had nothing to tell friends, classmates, or teachers when they all wanted to know what was going on with me.

     My peer group was out having life experiences that I was unable to participate in and experience.  I sat out the last few months of my senior year in high school.  I didn't have that fun summer with my friends before everyone went to college, and I didn't get to go away to college.  My friends were going to classes during the day then coming home to their dorms where they studied for a few hours before they went out to fraternity houses and drank beer.  Nothing could have been further from my life at the time!  I was going through life experiences that most of my peers probably wont experience until they are senior citizens.

     I've spent so many years feeling alone.  Recently, however, I have discovered my tribe. I want to share how with as many people as possible because no young person battling a chronic illness needs to feel alone when there is a massive tribe of supportive people just waiting to connect with you.

Tip 1

Utilize Social Media.  

     These days everyone is online and most of those people are on social media.  It makes sense that people like us with chronic illnesses who are often stuck at home, usually bored because we can't do our normal tasks, and are often socially isolated are flocking to social media.  I've met a handful of people with similar diagnoses in my waking life, but through social media I can meet thousands of people from all over the world.

     When I was first diagnosed, blogs were the primary place to meet people with the same illness or diagnosis.  Now there are Facebook groups, so many Instagram accounts, YouTube channels, and Pinterest boards a plenty!  I personally really like Instagram because the hashtag format makes it really easy to search for people along a certain topic or niche.

     When I decided that I wanted to connect with people like me and start to build a tribe or join one, I started with Instagram.  I looked up tags that related to me like #chronicillness, #chronicpain, #lymedisease, #invisibleillness, and followed people whose posts spoke to me under each tag.  I'm not selling this as a strategy to Insta-fame, but it got me connected with people like me.  As Instagram began to suggest relevant people to follow, and people started to follow me back, I began to build a tribe. 
      I'm not used to there being people like me in my life.  Now, all of a sudden, I can open an app on my phone and there are hundreds of people (see I'm not Insta-famous) all in one place posting material I directly relate to.  Memes about annoying doctors, photos of needles or infusions, statistics about infection rates, or just a picture of them and a caption about how tired they are or how much pain they are in.  Because of this app, my tribe is always with me in my pocket reminding me I am not alone, my pain is real, and I am strong enough to reach my goals.

     So if you're looking for your tribe, my advice is to get on social media and search for people posting about topics related to you.  Friend or follow them, and you don't have to use Instagram.  You will connect best if you use a platform that is natural to you.


Reach out!

     Once you start making friends and following accounts, make sure to reach out.  Like photos, posts, or pins.  Comment on content.  Interact with users by visiting their blogs or websites, private messaging, or emailing.  Obviously, don't stalk or spam people but take an active and friendly interest in other people and their content.  If you find yourself wondering something about a post, comment your question.  For the most part, people are on social media because they are looking to join a community and they want to interact.  This seems like a fairly simple and straight-forward tip, but I think it is the most important.  Reaching out and making genuine connections is the heart and soul of finding and building your tribe.

Tip 3

Make Connections.

     This step takes Tip 2 and goes further.  There are so many awesome spoonies and other chronic or rare illness warriors out there who have founded organizations, etsy stores, non-profits, and blogs.  I am finding that getting involved in some of these endeavors is not only a great way to meet people but also an opportunity to learn new things about myself and about what is possible when living with chronic illness.   Here are a few such organizations:

          Chronically Smiling part of Chronic Connect Inc.
  • Mission: "seeks to serve the chronic illness community by providing resources and community for patients"
  •  Sends "patient crisis care packages" to hospitalized individuals with chronic illnesses.
  • Executive Director: Ilana Jacqueline 
    •   Ilana started this organization "because when you have a chronic illness people forget that you exist."  
    • She has rare and chronic illnesses herself.  Check out her personal  blog here.  
    • This is a video of Ilana describing her chronic illness experience

             Chronic Connection
    • Mission: "provide services that help teens and young adults dealing with chronic illness" 
    • Provides life coaching to help teens and young adults 
      • set and reach goals despite their illness
      • connect with one another
      • educate themselves about their illness(es)
      • find/use their voice 
    • Founder: Denise Archilla 
      • Denise is a life coach with a Masters in social work and a Montessori (6-9) teaching certification.  
      • Her greatest inspiration came from working with chronically ill kids with Cystic Fibrosis and their families.  She became very close with a particular CF family who inspired her current work.  
              This site offers a "spoonie card swap" which is kinda like a pen pal secret Santa.  If you sign
              up, you get assigned a random person's info and you send that person a card and a random
              person sends you a card.  I just participated in my first one and hopefully it's the beginning of
              two new spoonie pen pals!  One of whom lives in England.  I find that pretty exciting because
              I've never been out of the U.S.  I'll let you know how it goes.

              They also have a periodic "Ask a Spoonie" segment consisting of videos submitted by their
              advisory board of teens and young adults with chronic illnesses.  These videos cover topics 
              from pill organization to health insurance, to dealing with offensive comments.

    Final Thoughts

    Get involved! Have some fun. I hope this was helpful to someone out there.  Maybe someone like my seventeen, eighteen, nineteen year-old self, completely unaware of the support available for people with chronic illness.

    Sending you Healing Hugs And Hope,



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