How has Social Media helped you with your health?

I was thinking today about how Social Media has affected the way we deal with illness. Once upon a time if you were unwell it was a trip to the doctor and if needed a specialist. The only infomation that was available was that given by the doctor, nurse, social worker or maybe the odd brochure. Maybe a trip to the library might have given a few clues to your disease or treatment. People could ask their friends or family if they had any knowledge but on the whole people were fairly private about their health issues. Without the internet one dealt with things in the best way possible, often struggling for understanding and the support of others in a similar situation.

However things have changed, with the internet has come various forms of social media, websites on everything you can imagine and the ability to interact around the world via Facebook, twitter, blogging etc etc. The first thing I did when diagnosed with Uterine Cancer was to look on the internet and find out as much as I could about this cancer. When told I was to have radiation I again went to the internet to find out how this would all work. Fifteen years ago I was not connected to other social media outlets, in fact some were unavailable or in their infancy, so I would read all I could find online. Of course the main thing was to be careful to read sites that had some sort of legitimate backing to them rather than scare mongers!! Again when I was diagnosed with Lymphedema I was at a loss as to what this could be and how I should care for myself. Fifteen years ago there was not a lot about Lymphedema and many of the pictures showed people with elephantitus, which really frightened me, also there was very little about treatment. Now via You Tube you can watch videos of Manual Lymph Drainage and bandaging to treat LE, things you re able do for yourself.

We then come to today where I have two Blogs that I write, a twitter account, Instagram and Facebook groups and pages. Wow what difference this has made to how we cope with illness. Now when you get on the internet you can find people’s personal stories, you can ask questions, you can learn and better understand your own and others situations. The blogging community has been a remarkable eye opener, where people open up there lives to others, in the hope of helping and bringing understanding to others. I call many my “Cyber friends,” I would never have connected with these people years ago and what a loss that would have been. The internet and social media makes the world a smaller place.

My first blog was called My Lymph Node Transplant and started when I was having a Lymph node Transplant to help my Lymphedema. Pre Surgery I could find very little about this procedure so I decided that it was time to document this myself. My daughter helped me to set up my first blog and today it is followed by a hundreds of people looking for information on Lymphedema and the latest surgery. It has been read in nearly 200 countries and some of my “Cyber Friends” I have met in person .

We then come to my latest blog which I have again started due to lack of Information on Radiation Induced Lumbar Plexopathy. Again the first thing I did when diagnosed was to hit the internet, but this time I came up with very little, except for a few medical articles some of which I could not access properly. There were no personal stories from real people dealing with this rare condition. There is a huge difference between personal accounts and the medical based ones. Already this blog has been read in 42 countries and I have connected with nine people who have the same condition. Only one is in a wheelchair like me, the others are still able to walk and have various degrees of difficulty. However we all have the same story when it comes to initial symptoms. Some have tried Oxygen therapy, but it has not helped, others have used warfarin, to help the blood supply to damaged nerves, but have had mixed results and no cures. I have also found out about a trial, that a French Radiation Oncologist is running, where she uses a mix of medications. I have contacted her and I am waiting to hear more from her. I would really like to hear the results and if the trial has helped anyone. I am sure there will be more on this in a later blog when I have more details.

Social Media has really become the way to gather information, connect with others, feel supported, pass on helpful tips, learn from others and build “cyber communities.” One fantastic group that has helped me a lot is on Facebook. It is called ” I use a wheelchair… so what’s the problem?”https://www.facebook.com/groups/117559551611045/
They have been great answering all the personal questions that only another person in a wheelchair would know the answer to. They are a great group as I navigate my way through this new way of living.

So how has social media helped you with your health?
What is the best thing you have achieved via social Media?

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Thanks


13 thoughts on “How has Social Media helped you with your health?

  1. Your writing is improving! I am sure that this will help many (including those that see Social media as a menace). You are offering some valuable information and expertise. 🙂

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  2. When I began having problems the Internet was in its infancy. My physician suggested we visit a large bookstore and get all the information and resources we could find. It was good advice.
    We all use search engines and social media for information, inspiration, and support. I like it. However, I am distressed with the amount of misinformation that is opinion disseminated as fact.
    A peer recently posted a question on a support site. I knew the answer and could have explained and referred her to more resources. She received hundreds of responses in the first 2 hours, and they were based solely on people’s personal observations offered as fact. “My uncle had…, so…” Sadly, she learned nothing useful.
    Other times the information and inspiration are simply awesome. I follow several Paralympians. Their experiences and attitude are a godsend to me.
    Yes, used properly, social media and the Internet are wonderful and inclusive.

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    1. You have hit the nail on the head in that it is very important to note where the information comes from .. The last few months reading and following other wheelchair users has been my inspiration to see what I can do with my life.. I fear that without this I would have sunk into a hole misery… Peer support via the internet has been essential to my moving forward. Nine months on from being paralysed I feel I am making the right choices and I am getting stronger everyday due to advice given by other w/c users … Including yourself.. Thank you Helen

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      1. My wife and I thoroughly enjoy doing peer support. It distresses me when I see dozens of answers from peer that are speculation or are based solely on their own experience. There are two facets of peer support. First is personal support based on experience and opinion when offered as opinion, as I am doing tonight. Second is support based on established research, as when we quote from organizations, in my case from the National MS Society. Blogs, in my experience, tend to be well thought out, and I find them helpful.

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      2. Good Peer support is so helpful as it is a mix of tried and tested things with a scientific base… Social media allows people to connect with others when in the past this would not have happened.. Hope your move has gone well and you are all settled for the Holiday Season … Helen

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  3. I have to admit, I had a problem using social media when it came to my health. It took me 3 years to publish my blog and I never really expected it to go a specific way. I am glad it has worked out for me so far but a big part of that has to do with the fact that I now feel comfortable sharing my experiences about cancer.

    One of the things I appreciate from blogging is connecting with people who have walked the same path as me. It feels great not to feel alone. I’ve also found a sense of community through my blog, something I feel I lack at times in real life (I feel trapped in between two worlds).

    I’ve achieved a few things through social media: connecting with people from all over the world (especially my family), making others aware of my disease, trying to make others feel normal in their situation and providing some level of support.

    Liked by 1 person

    1. Yes it takes a while to feel comfortable with being so open about ones health but for me the sense of community is so supportive and comforting.. Thank you for sharing your thoughts ….Helen x

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  4. I love the connections I have made through blogging and social media. I love the cyber friends I have made, including you, Helen. I think of social media as a life raft of sorts. You all help keep me afloat. Thanks for being part of this amazing online community. And two blogs! Yikes. How do you manage? I can barely manage one. xx

    Liked by 1 person

    1. The lymphoedema sort of manages itself as people are always looking for info.. Building up the Wheelchair one is a challenge as RILP is so rare but felt I needed to separate the issues even though both were caused by cancer treatment… You have managed to write two books as well as your blog and newsletter… Yes I love that idea of a life raft.. My cyber friends have certainly kept me afloat.. Happy New Year… Good luck with your latest book.. 🙂

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