What if we viewed lived experience as an asset? As an asset of professional, economic,…
Let’s face it, we live our lives online nowadays. We post, tweet, upload photos and videos and update our status whenever we see fit, detailing our lives for our friends and followers to see. We post about what we do, what we eat, who we’re with, what plans we have, we share photos, and not only that, we shop online, handwritten letters are dying out in favour of direct messages, whatsapp and snapchat, we self-diagnose medical ailments, we study online, do research online, do our banking online; our lives revolve around internet and social media. However, social media and the internet has taken on a whole new meaning for those with illnesses. It is frequently the only way we can live our lives, stuck in bed, or housebound, or with very limited contact with the outside world. It becomes our place to socialise, keep up with the outside world, keep in contact with friends and family, and to share the ups and downs of our lives with our conditions. It also becomes the place we turn to for support, from the extraordinarily large online illness community, dotted around on Facebook groups, social media sites, forums and websites. We become friends with these people and share our stories, our worries, our fears, our news, and we seek support to cope with our conditions and the restricted lives we can live because of them.
The online illness community is vast, and the amount of groups on Facebook is scary. I myself am a member of far more than I care to remember, but barely interact on more than a few. I have a large circle of Friends on Facebook, over 2,000, and a large amount of those are people I’ve met in groups, through friends of friends and people who have been directed to me for advice and support, who have medical conditions and disabilities, or parents of children who have a condition or disability. I scarcely talk to many of them on a one to one basis, or at least not uphold regular dialogue with these people, and these ‘friends’ are dotted all over the world. It’s comforting to know you have people out there, at a click of a button, who are there to support you. That said, I do interact with a lot of people with conditions and disabilities on Facebook, and parents of poorly children, and am in touch with people I have met through my work, or through my illness and hospital admissions, family members, friends from prior to becoming poorly, and friends since since becoming poorly, and more. I’m also on Twitter, where I interact more for my work than anything else, and LinkedIn, for my charity work, YouTube, Google+, Pinterest, I have a blog/website and a Facebook Page separate to my personal profile, even my dog Molly has her own Facebook page with over 3,000 followers just for her. My network is a big one and it can be quite overwhelming at times.
The online illness community, however, is a double-edged sword. It has many pros, but equally as many cons.
People with illnesses become dependent on social media for support. We post about our conditions, share our journeys, ask questions, reach out for support in our desperate times, or simply talk with people who understand what we go through. Our lives become revolved around this online world of social media, of people who know so much about us, but yet know so little, who we’ve never met and probably will never meet, and upon whom we build great friendships. We become almost reliant on our interactions online. Our lives revolve around our friends, supporting them and them supporting us, sharing our journeys and asking advice or looking for support, or even inspiration. It’s a wonderful place for a poorly person, because they aren’t limited in interacting with people like we are physically, people are at the touch of the button, we don’t have to leave our houses, or even our beds, and we can socialise with people and have support and support others, and share our worries and woes.
However, there is an enormous downside to the illness community, one which troubles me greatly and which does, at times, put me off. People who aren’t a part of this community might not understand it. The online illness community, at times, becomes competitive. That is to say, people compare themselves to someone else, think they’re worse off than the next person, and then see fit to outdo that person or groups of people on how poorly they are. It’s quite a twisted mindset, but one which a person can easily get sucked into and not step back and see their warped behaviour. It goes from support to competition, and that’s when bitterness, bickering and arguments break out, or when people get upset, or feel that their suffering is being belittled because someone tells someone else “you’re so much better off than I am” usually followed by something like “you have no idea what it’s like to be ill” or “I’d happily swap with you” or “you’d never cope with what I cope with”. There really is no need. It is a place for support, a place to help each other. We should not feel the need to compete. I am very poorly, but there are people worse off than me, people better off than me, but I don’t want to judge them in comparison to myself and go round telling people my judgement on which of the two they are. As I always say to people, a certain condition or a certain severity doesn’t necessarily mean greater or less personal suffering. Suffering is not dictated solely by illness, but by multiple factors; personal situation, support network, coping mechanism, their mentality on a certain day, whether they have other complicating factors, family situation, financial worries, whether they have a good and understanding team of doctors, and whether they have a mental illness which complicates their physical condition because they cannot always cope with the two combined. I wish there’d be a day where competitiveness was gone, and the peace was restored, and support would be the aim of the game. It’s easy to slip from things being “really, me too!” to being “I’m worse off than you” and so the competitive cycle begins. I don’t blame people for slipping into the trap, because it’s one easy to fall into, but it is extremely off putting and can belittle another’s suffering when there is no need, or even potentially do that person harm by making out that their suffering and their feelings about their life and their illness are in some way invalid. I urge people to just keep in check, read back what you write, and if you do feel someone is better off than you, keep that feeling to yourself. You never know what harm you could do to someone by expressing that and belittling their suffering and experiences. Remember, suffering is not dictated only by the condition and the severity of that condition, but in addition to the whole personal, familial, financial and situational conditions and whether they have a mental illness or are struggling to cope mentally with their condition generally, or on that day. Illness should not be measured by how you are compared to someone else, rather it should be based on extending the hand of friendship, supporting each other and making them see they still have worth, they matter, they will get through whatever obstacles they face and that they are loved and cared about. It makes the world of difference; especially to someone who is really struggling, and whom can be so easily tipped over the edge of the “coping cliff” (see past blog post for more).
The online illness community is a wonderful place for people with limited contact with the outside world, or as somewhere to feel understood and less alone. However we need to remove the competitive element, and restore the completely supportive atmosphere. You could do serious damage to someone who is struggling by telling them they’re better off, thus belittling their suffering, so watch what you say and whether you think you’re worse off than someone or not, never, ever, voice that. It can do untold damage to someone who is struggling or has a mental illness. Suffering cannot be compared or measured, nor should it be. We all struggle with our own unique problems and situation and you cannot start belittling others, otherwise it’s not a support group. Giving advice and support, sharing things with people and cheering people up, making them feel worthy and loved and showing them they matter should be the focus of groups and the damage will be eradicated, and a wonderful support group restored. Not only that, it could save a life of someone who is struggling. Just watch next time you post, read back what you’ve said, and think about how someone would read that. Put yourself in someone else’s shoes, and imagine how your message would make them feel. Just stop and think. You have the power to change someone’s life, but you also have the power to destroy it, using only words on a social media site or forum. So use your words wisely and supportively.