Twitter health communities- the negatives and making them better

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Twitter is my one of my favourite and at times least favourite things. I look at it more than most people because I use it for work and throughout the day for my own personal benefit too. I use it for news, for laughs, for reading material, for travel and fashion inspiration and also for support or information about health issues.

A lot of the accounts I follow are owned by people who have similar health struggles to me, or accounts that support people like us. In the past few weeks I’ve seen lots of stuff about abled and disabled people, the difference between those who live with chronic illness and those who don’t and tweets about the ignorance towards mental health. I usually like seeing conversations online about this, because people with struggles such as these get to have a voice and can talk to others they would never get support from in person, because they would never have known they existed. I like seeing positive engagement and I like it that Twitter is such a good platform for allowing communities to join together and have a voice. But it’s really not been all good lately.

This is probably nothing new. I don’t have the time or the social media energy to keep up with everything on my timeline and through personal choice I don’t often join in on health debates because a recent good run in health for me has given me respite from constantly worrying and thinking about symptoms and doctors. For me, the problem with making a voice for those who have invisible conditions like I do is that it’s so hard to get people to remember, accept, believe or sympathise with something they can’t see. People need to see medication, or see that you’re bed-bound or stuck at home to accept you’re unwell.

Illness comes in many different forms- both mental and physical. Just because someone gets up and goes to work day in and day out, doesn’t mean they can’t possibly be unwell. Just because someone socialises, goes on holiday, has a social media presence and gets stuff done, doesn’t mean they aren’t unwell. I sometimes think it would be easier if I was visibly seen to be popping pills, as it’s something that people relate to illness, but I don’t need to. Of course you can’t expect everyone to understand your health issues- mine are so complicated highly qualified doctors struggle to understand them, but it’s not about accepting the medical science, it’s just about remembering that there can be stuff happening below the surface of normal looking facade.

It’s one of the biggest issues facing people who suffer with chronic conditions that leave no mark or show no obvious signs- people don’t buy it, and I see  frustration anger, and even arguments happening on Twitter  because of this . Why should someone who battles with illness have to justify the need to take a step back, miss an event or defend the fact they’re out and about getting on with life? “But you don’t look sick…” is a common theme. Newsflash- people with long term health problems can wear make up and nice clothes and hang out on beaches in bikinis. They can have lives. It’s really bloody hard to battle chronic illness. Really, really hard.

I’ve stopped expecting people to remember I’m not the same as everyone else. I don’t get angry about it, I just get tired of it mostly, because I don’t like to bring up my health issues or show signs of weakness, which isn’t how it should be. I go to work, go on holiday, go to the gym and keep up with my social life, but at a cost. I spend plenty of time nursing pain, limping, attending doctor appointments and blood tests, peeing into test tubes and having body parts scanned- mostly in the evenings, at weekends or at the crack of dawn, because I’m lucky. Not everyone has the luxury of getting appointments like these. Maybe if I advertised that a bit more, people might remember, or even ask how I am.

I’ll still always credit Twitter with being the biggest help in getting to the bottom of my health issues, and eventually getting the right care, but there’s definitely work to be done in making it a better place for these communities.

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