Chronically Connected: Hashtag Your Way Through Chronic Illness

Hashtag Your Way Through Chronic Illness: 6 Tips for Going Online To Find Your People.

It’s a familiar scenario: The wee hours of the morning and I’m wide awake.

Chronically fatigued but still awake.

My legs are twitching and burning. My torso is going numb. I’m changing positions after what seems like every 30 seconds.

If I’m going to be awake, in pain and single-handedly winning the try-outs for the Annoying Olympics, then I may as well do it in the company of others.

There is only one thing left to do: Pick up my iPad and engage with my midnight friends!

The online world has the power to break down social isolation barriers, particularly when it comes to chronic illness.

This is something I have really only come to appreciate over the last 15 months since I started blogging.

In the blogging and business world, you are told that social media is everything – after content creation – and you’ve got to be all over it.

Being ‘all over it’ opened up my eyes to just how beneficial online interaction can be on a personal level.

All of us, regardless of age, background or economic status, have a need to feel connected.

Social interactions are an integral part of life and take on prime importance when people are faced with challenges.

Think about how isolated people can be when restricted by things like illness or disability.

The online world has opened up the communication lines in ways that were never previously possible.

I got sick in the November of 2005.

We were still on dial-up internet connection at home.

I literally had to be plugged into the wall with my laptop at my father’s desk in the study to get a connection. And I should point out that the study was located in my parents’ bedroom. #SocialBuzzKill101

The network was slow, mobile phone functionality was limited (remember the iPhone craze didn’t start until 2007) and it never even occurred to me that I might be able to connect with people in an online capacity.

Facebook launched in February 2004 but I was what you would term a ‘slow adopter’ and didn’t join up until several years later.

The most ‘online’ I went in the early years was a basic Google search on ‘Guillain-Barre Support Groups,’ which directed me to a single organisation and an email address.

If I were to type ‘Guillain-Barre Support Groups,’ into Google right now, it will give me page after page of results.

But this goes beyond a basic Google search.

For some people, particularly those with rare diseases or debilitating conditions, online networking may be the only way they have to find others with a shared experience.

It is bridging the gap between a journey of loneliness and one that is filled with laughter, hope and support.

I’m fortunate enough to have a loving husband, family and a great circle of friends, but I still find it incredibly comforting to connect online with other people and be able to say “That’s exactly how I feel! You really get it!”

Their illness or combination may not be the same as yours or mine, but their direct experience means they have the ability to be empathetic, encouraging and supportive in a way that only those who “get chronic illness really get it,” can truly provide.

So how does one become chronically connected and hashtag their way through chronic illness?

There is a bit of strategy involved here.

It’s similar to how you would approach online networking for your business or blog, just a little less structured.

Here’s six tips for you to consider:

ONE – Google Search.

It is widely known/accepted/understood that Google is your biggest friend in the online world.

You ask, Google answers.

TWO – Hashtags (#).

No longer just your phone’s pound sign, hashtags have become a prominent part of our tech culture.

Hashtags help you to find related content for a specific topic (e.g. #ChronicIllness), connecting you with other social media users based on a common theme or interest.

For example, I’m still a bit slow when it comes to Twitter – I don’t really get it – but I’ve established that the best way to find people in my community is through a hashtag search.

I could search ‘#Spoonie’ or #”GuillainBarre’ and then use the results to click-through to the profiles of the people posting content under those categories. And away you go!  

THREE – Work out your communication groove.

When we use social media for business, the primary questions we are always told to ask ourselves are, “Where is your audience actually spending time? What social media outlets are they on?”

These are still valid questions to consider when using social media for personal use, but it’s not as dominant a force as in the business world.

Yes, you want to know where your peeps, your tribe, are hanging out so you can connect with them, but the platform(s) you choose should be reflective of you and what you enjoy doing.  

I say work out how you like to communicate with people and how you like people to communicate with you, aka your communication groove, and start from there.

Do you like to express yourself through pictures? Then a platform like Instagram might be your ideal stomping ground. My friend Carly Findlay wrote a great post here on how to use Instagram to build a strong chronic illness community.

Perhaps you feel more comfortable interacting in a relatively private community, in which case a closed Facebook group might be more up your alley.  

Do you thrive on instant news and a faster pace? It might be time for you to tweet it up.

Do what works best for you and the rest will start to fall into place.

FOUR – Connect with the bloggers that you follow.

Leave a comment. Send an email. Reach out and comment on people’s stuff that you like on social media – it might be a picture on Instagram, an article on Facebook.

I’ve done this and been on the receiving end of it and it’s opened the doors to some really genuine friendships.

FIVE – A-S-K.

So you’ve joined one group on social media and connected with a few people. But you still feel like something is missing.

Not sure where else to turn?

Ask! Put the feelers out there. That’s what these groups are designed to do; help you!

I see post updates all the time on Facebook that say things like, “Can anyone help me with xx…I’m looking for yy..”

Then you can use the recommendations to connect with an even wider audience.

SIX – Tap into the readily available online resources.

Here are a couple of well-known online resources for the chronically ill that I have personally found useful:

    • Chronic Babe – online community for younger women with chronic health issues who want to be their best.

Your turn! Are you using the power of the online world and social media to get chronically connected? Does it help? Comment below!

Like this post? Then share it!

Photo Credit: Pixabay

All photos and content the property of Starbrite Warrior and Bree Hogan. Not to be reproduced without permission.

50 thoughts on “Chronically Connected: Hashtag Your Way Through Chronic Illness”

  1. Susannah says:

    This is a great post and really reflects how I gradually felt my way around the chronic online community in 2007/2008 when I first started googling diabetes (even though I’d had it for years!) It’s amazing who you can find with hashtags!

    1. Bree Hogan says:

      I agree Susannah. Hashtags have made connecting with people even easier as they are so easy to search by. Love it!

  2. Sabrina Fox says:

    Love this post! And definitely a new idea. I find new people to connect with through the PTSD and Social phobia tags.

    1. Bree Hogan says:

      Isn’t social media amazing with how we can use it right now, Sabrina? Who would have ever thought we could connect with people all around the world and find support from others who are in/have experienced similar things to us? So cool!

  3. linda spiker says:

    What a great way to find support. Very creative!

    1. Bree Hogan says:

      Thanks Linda! It took me a while to get creative connected (and I’m still learning!) but I’m really glad I did!

  4. Aarika says:

    This is such an awesome post! It is inspiring, candid, and thoughtful. Creating online fellowship and community can truly increase health and happiness. Cheers!

    1. Bree Hogan says:

      Thanks Aarika 🙂 Human connections (the good ones!) are certainly key to our health and happiness. The online world has opened up a whole new level of possibilities…

  5. Becki S says:

    I love how you are using social media and telling others about how they can. I had never thought about it in this context and it reminded me of all the positive things social media can do. I often only consider the negative things it’s added.

    1. Bree Hogan says:

      Hi Becky, I hear what you are saying. Social media can have a very negative side to it, no doubt about it. If we want to use it to our advantage we need to filter out the negative stuff and focus on all the positive things that are happening in that space. Connecting with genuine people is right up there. Good luck!

  6. Chinagirl says:

    #yourock #brilliantblog #youareastar

    1. Bree Hogan says:

      Lol! You go Chinagirl! #yourockrightback

  7. Cori says:

    I’m sorry you have chronic illness to deal with. I hope the hash-tagging has made finding support easier.

    1. Bree Hogan says:

      Hi Cori, thanks for your kind words. Hashtagging, and indeed social media in general, has definitely helped finding support that much easier. I can go global! 😉

  8. This is super. It is so important to have community that understands what you are going through. I bet your writing is helping so much as wel! Keep going!

    1. Bree Hogan says:

      Agree with everything you just said Heather! My writing is definitely helping me with my own healing; if it is also a comfort or a help to other people then that is awesome too.

  9. Loved this post. I have sleep issues (not a chronic illness so I may not fully understand how it is for you) so I do know how frustrating it is to be just UP when you need to sleep.
    I love the web there is a lot of nastiness out there but there is also a lot of love and support and it’s such an amazing feeling.

    1. Bree Hogan says:

      Thanks Dia! 🙂 It is very frustrating to be up when you need and want to sleep, but at least we can do it in the company of others, lol!

      And you’re right, there can be a lot of nastiness out there on the WWW but we just have to pick and filter our way through that to get to the good stuff. Because the good stuff is worth it.

  10. Natalie says:

    I don’t have a chronic illness, but I definitely understand the power that an online community can have when you’re facing something difficult. I’m so glad that you’ve found comfort and support from others–that can make even the most difficult thing a bit easier to face. 🙂

    1. Bree Hogan says:

      Thanks Natalie 🙂 The online community can be super helpful with whatever we are facing; we just have to plug into the right channels (and sometimes cut through the not-so-good side of things).

  11. Lexi says:

    The online community can be a great way to gain support. I love the idea of using a specific hashtag.

    1. Bree Hogan says:

      Hashtags have opened up my eyes to a whole new world Lexi!

  12. I don’t have a chronic illness, but I do have insomnia and online twitter at night is the best. I am so glad there are so many amazing resources out there now!

    1. Bree Hogan says:

      Any tips for using Twitter, Angela? I’m still such a nuff nuff when it comes to properly understanding how to use it to it’s maximum effect! 🙂

      1. I just generally tweet my emotion at the moment and use the insomnia hash tag and follow it from there and see where it goes. A lot of my favorite authors are always insomniacs so I follow them and see what they are up to. They are generally happy entertaining instead of depressed “I want to sleeeeeep”

        1. Bree Hogan says:

          Ooooh good idea! I’ve followed hashtags before but I’m such a sporadic Twitter user that I haven’t really done it justice. You’ve inspired me to do a bit more digging and connecting. 🙂

  13. Lezley says:

    This is such a cool and amazing post. This is a testament to the power of the internet and the power of genuine human connections. Love this!

    1. Bree Hogan says:

      Thanks so much Lezley 🙂 When we harness its powers for good the online world can be an amazing space!

  14. it’s the time to be alive again for sure!

    1. Bree Hogan says:

      Most definitely Leslie!

  15. Laci says:

    What a neat idea to use the # and get more support and understanding

    1. Bree Hogan says:

      Yup, gone are the days of the humble # just being yet another button on our phones, lol! Thanks Laci 🙂

  16. Roxy says:

    The world of social media is an amazing one. You can literally connect to people thousands of miles away just with a hashtag. I’m so glad to hear people are finding support as the learn to live with chronic illness.

    1. Bree Hogan says:

      It still blows my mind what is possible in today’s world, Roxy! How the humble hashtag has evolved!

  17. Christina says:

    Love this! I’m so glad that you are sharing this oh-so-important way out of isolation that chronic illness leaves so many people in, including myself! I was just thinking–I have a friend who has a very rare disease. In the “old” days (the 80s & 90s!), she literally had ONE way of communicating with others who shared her disease. It was through a bi-yearly newsletter by the ONE organization that represented her rare disease. Now–the options to connect with others are almost endless. It’s really a wonderful thing!
    As for myself, I love Instagram and Facebook! My user name on Insta is myspoonsandme, for anyone who is interested in following 🙂
    Xoxo, great job as always, Bree!

    1. Bree Hogan says:

      Thanks Christina 🙂 Social media is amazing; it’s how you and I connected after all!

      Wow, when you put your friend’s situation into context – bi-annual communication, woah!! – it is absolutely amazing what we have access to nowadays. It certainly does wonders with breaking the isolation barriers, particularly for people who really struggle to be able to leave the house.

      For anyone else reading this response – check out Christina’s Instagram page @myspoonsandme She’s awesome 🙂

  18. Shann Eva says:

    I’ve found so much support and great friends Online. If you would have asked me a few years ago, I would have laughed at the thought, but it really has been such a blessing.

    1. Bree Hogan says:

      Me too, Shann! I would have laughed at the thought of making friends online myself a few years ago. But it really is possible and it’s such an amazing resource to be able to tap into.

  19. JoJo Tabares says:

    I’ve had chronic illnesses for over 35 yrs. I have quite the collection and have a blog site where I support those with chronic illness/issues. I have done many of what you suggest over the years. It is isolating.

    1. Bree Hogan says:

      Hi JoJo 🙂 Wow, 35 years is a long stretch to live with the ups and downs of chronic illness. I love that you have a blog site where you support others living with chronic illness/issues. This is what I aim to do over here at starbritewarrior.com I’ve jumped over to take a look at your site and I can see that we have similar ways of dealing with life’s ups and downs, with humour and joy being a big part of that. I will definitely be back to check out more of your stuff. Xx

  20. Jenny says:

    Online seems like a great place to find support!

    1. Bree Hogan says:

      It certainly is Jenny!

  21. candy says:

    Totally new to me, never heard of this. Interesting reading and learning.

    1. Bree Hogan says:

      Thanks Candy. Gotta love it when we learn something new and interesting every day! 🙂

  22. Ashley says:

    I don’t have a chronic illness, but online communities have helped me with shyness and anxieties I have. It’s nice having a space to talk with people going through similarities!

    1. Bree Hogan says:

      Exactly Ashley, it’s all about the similarities. That’s the beauty of the online world – we can connect with people going through similar experiences and challenges to us, whatever they may be. I love my midnight owl catch ups! Xx

  23. Kristina says:

    I’m sorry for your struggles. My son was born with a genetic disease and I used the internet to help find a lot of strength. It did help tremendously in the early days.

    1. Bree Hogan says:

      Thank you Kristina. I’m glad you also found support and strength in the online communities when you needed it most. Xx

  24. Emma says:

    This is something I never considered doing for my chronic illness. I’m so glad you’ve found support and care among the online community. I have as well in other areas of my life so will definitely have to try using hashtags to reach even further into the network. Thank you for sharing your story! I know it will benefit others!

    1. Bree Hogan says:

      My pleasure Emma 🙂 If sharing my story and experiences helps just one person then it is totally worth it. The online community can definitely have it’s moments (e.g. negatives) but I think by and large it has been a positive experience for me. Give the hashtags a go and see where it takes you! Xx

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