I’ve mentioned before that I am so pleased that 11 years on since my diagnosis I am doing well. But having PH does really suck and there are so many things I would love to do, but I can’t. I've been thinking about social media and if it really helps or if it's bad for you when it comes to suffering with a chronic illness.
I think social media is an amazing way to share your thoughts and raise awareness for your health condition. Before the days of Facebook, Twitter and Instagram, people didn't really have the opportunities to reach out to people across the world and meet people who had the same condition as yourself. These day with a quick search and a click of a button, you've become 'friends' and joined groups with others with chronic illnesses.
You can chat all day, write posts and let people know about your daily life and struggles of living with your chronic illness. I think it's great that you can share things and certain people will understand what you're going through, whilst others are still learning.
However I feel there are downsides, like there is to everything. I'm not talking about trolls, because I believe love will always win over hate and sadly there will always be trolls out there and you have to learn to rise above it. But yes it is difficult to, especially when you're suffering and feeling down and people do try to bring you down even more. If you are suffering, then please speak to someone, don't try and battle it on your own, because there are people around you who will give you the help and support you need.
I'm talking about personal lives and personal profiles, even some public pages. I don't know about you but logging onto my personal Facebook profile and seeing the things that people are doing and wishing I could do can get very overwhelming. When battling with a chronic illness, it is hard to see people able to move forward with their lives without worry, but with social media it is more in your face.
I believe social media is one of the things behind the break downs of mental health. If you haven't got a strong mental health, not everyone can keep strong all the time, it can make it worse. Is it down to jealousy of other people's lives? I think not, I believe it's the longing and wishing and wanting of having a life of not thinking about health issues or the grievance of wanting to have the life back you had before your diagnosis. All this comes with suffering with a chronic illness and it can be difficult.
Another battle with social media are the likes, dislikes and followers. I've spoken to others who publicly share their chronic illness lives and they've said how the likes and dislikes can get to them. One day one post has 20 likes, then another has over 100. Some people get over 100 followers in 1 day and others get 1 or 2. Is this how we should live, going by the amount of reactions we get to a post? I must admit, I've also been caught up in this. I've wanted more likes on one posts and wondered why isn't anyone engaging in another one? You realise that social media has over taken you when the feeling of getting a "like" is great, but when you don't, it's a let down. What is social media for? To share your life? To share your personal battles? To get the most likes? Social media is a weird, but wonderful thing. It's helped saved many lives, it's made other lives difficult, but we wouldn't be without it.
A friend I hadn't seen for a while came over recently and I was on my oxygen and in my wheelchair too. They hadn’t realised that it was my life at home and they were close to tears. I do share a lot on my social media, but I don't share as much as people think and what happens in our home and the efforts we go through to go out for the day. People just see the photos of when we've arrived at our destination. People really don’t see behind the perfect pictures that social media paint and it’s easy to be sucked in by the hype of it all.
Overall, I believe that if you can control your usage of social media and make it something you enjoy using everyday it's a good thing. Yes it is difficult at times, but you can come away from it. You don't have to be on it 24/7. If you're not having a good day and you don't want to see people who are or are worrying about their own health, then don't log on to your account. Social media is like an addiction, many people, myself included, wake up and look on their phone. I love sharing my PH journey because I feel I am teaching people about this condition, raising awareness and generally helping others with PH.
I have learnt that social media isn't the perfect lives people make it out to be, but what people want others to believe. I really am ever so grateful for what I can do and have, but I will always miss the things in life, that I do wish I could have done if it wasn’t for PH and it does affect me emotionally. I wouldn’t be human otherwise.
To those who have struggled with social media and are living with a chronic illness... Remember be you and don’t worry about what others think they know. Only you know yourself best and the life you live. I'd love to hear your opinions on social media... please comment below 💜