The explosion of social media over the last 12 years has opened doors for people in many ways;  It has the power to connect like minded people all over the world, at any time, it gives instant feedback, it increases your visibility.

In the world of chronic illness has given people the power to educate themselves about their conditions, to share and learn from each other’s expertise, allowing them to become truly empowered in their own health and wellness so that they can work with health professionals to manage their conditions long term.  Personally, I have learnt so much online, instant access to information fuels my desire to know more, I have connected with some truly amazing people from all over the world that I wouldn’t have had the opportunity to do otherwise and it has opened doors for me to raise awareness about living with chronic illness in schools, hospitals and universities.

However, we must be mindful that this virtual world is just a snapshot of reality.  People can be who they want to be.  The shiny pictures of your friends new house hide the crippling mortgage repayments that they struggle to meet each month.  The beautiful smiling family photos mask the fact that their marriage is being held together by a thread.  Make up and a smile can be a beautiful mask for depression, grief, chronic illness or pain.

Yesterday I took some lovely family photos on a trip to London’s South Bank. We look like everybody else, minding our own business and enjoying the sights. What those smily photos of my family don’t show you is that the reason for our day out in London was another road trip to one of the city’s many specialist hospitals. An attempt to make a ‘day of it’ once we had travelled into town.

They don’t let you know about the conversations with my husband deciding if we should hire a wheelchair for the day for my son or if he could manage a few hours out with us without it. You don’t see that my daughter used her wheelchair for most of the day but hopped out for the photo opportunities with her brothers.

The smiles hide the fact that my daughter is feeling poorly with a sore throat and by the end of the day she said her heart hurts just because she has stood up out of her chair.

You don’t know that the reason we had a few little sit downs along by the river was not the soak up the sights of the South Bank but to pace and rest on the way to our destination. Due to my son coming over unwell and clammy or because I just had to take the weight off my feet for a minute.

It doesn’t show in the photos that the motivational speech by the Lego artist at the start of the exhibition really hit a chord with me. As he talked so eloquently about his inspiration for the exhibition and that everyone is a superhero and can overcome life’s adversities. He could have been talking just to me.

My smile and make up mask the fact that every step I took was excruciating as my knee is finally falling apart and is bone on bone in the joint as I walk. And by the time we had looked around the exhibition the toes on one of my feet literally felt like they were on fire and cramping all at the same time.

The photos don’t show you that when we stopped for food the first thing that we ordered was tap water so three of could top up on our pain meds.

They do not show you that this morning my daughter is on the sofa under a blanket with HR monitor on her finger as it keeps jumping to the high 140’s as she is still feeling poorly and her autonomic system is just out of whack. Or that we are not expecting one of our son’s to surface at all today as the pay off for yesterday begins.

You see this is the reality of living with a chronic illness that social media rarely shows.  I love the fact that we can share in life’s triumphs, that I can read positive things on people news feeds, smiling children, happy couples.  Lord knows we need to celebrate those things more than most but we need to remember that an afternoon out doesn’t mean that we are cured, that we aren’t tired or hurting or going to pay terribly for it later. 

A smiling face, great lighting, a photo filter, just like a shiny new car often masks the truth and that is never more true than in the world of social media. It is important not to feel threatened by or envious of the false reality that we see everyday. Remember, no ones life is as perfect as their social media feed. 

If you enjoyed this post you may also like I’m Fine or How I fake my Chronic Illness Symptoms.

2 Comments

  1. Jill Smith Reply

    Sarah, l want to thank you so much for being so candid regarding the realities of chronic illness as it relates to your family. I’m to the point of rarely even posting anything personal on social media because I can’t even “fake it” enough to make our lives look good.. I am terribly guilty of believing that everyone’s lives as displayed on social media is perfect and happy. I have had to actually unfollow, not unfreind, certain people because I just couldn’t deal with the dramatic contrast between their wonderful lives and my miserable, broken, and hard to get through day to day life. You have opened my eyes and, with a few tears shed once again, I feel a sense of relief that we are not alone in this journey and our struggles, and everything will be O.K. despite the fact that we have been let down by schools, doctors, and family among other things. And although we have never met, I consider you a friend! I speak of you often to my kids and family. You are our gold standard, if Sarah can make it through and continue on through all the ups and downs, and the haziness of the future, then so can we. It might not look pretty, and definitely won’t be on social media, but it can be done! Thank you and God Bless you and your family! You are beautiful inside and out! All the best, Jill X

    • Sarah Wells Reply

      Jill,

      It has taken me so long to respond to you because every time a read your kind words it made me cry. I often sit curled on the sofa, with the kids flitting around me, dog snoring loudly at my side and my ipad in hand trying to make sense of my world by writing down my thoughts. I am humbled that by sharing my words with the world so many people have been able to relate and find comfort in the fact that they are not alone. Particularly mums of Kids with chronic illness like EDS. I love the fact that we can all support each other to stay afloat when the systems that are supposed to help us can often pull us under.

      Lots of love, God bless 🙂 S x

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