I love the internet. I think it’s amazing to have all the information in the world at your fingertips, we are at an unprecedented time where we can access anything and everything.
When you have an ongoing chronic illness like Inflammatory Bowel Disease, the lack of control in your life can be difficult to deal with, I always believe that gaining knowledge of your circumstances can make life a little easier, knowledge is power as they say. I recommend to anyone going through illness to read up and know your own body. Know what your treatment options are, what side effects your meds have, what you can do yourself to heal.
The NHS website is always a good starting place, but when I got very ill last year with Ulcerative Colitis I found that I wanted to know about personal accounts of illness, how it is in real life. I wanted to read about real people and not medical jargon or terrifying medical photographs. I struggled to find a UK based blog about IBD that I liked (though there seems to be LOADS now which is brilliant!!) and this is the reason I started So Bad Ass.
I found myself this year visiting forums and Facebook groups dedicated to people with IBD, I love that these groups stop you from feeling so alone, I have “met” a few people online from all over the world that I wouldn’t have had the chance to meet otherwise and feel inspired by them and think they do an amazing job at raising awareness and positivity around IBD, ostomies and jpouches.
But, and here is a BIG but… I have left a LOT of groups and forums because of one thing in particular, competitive sickness.
Now competitive sickness is when you have someone who, if you have had 3 surgeries, they have had 6. If you ask a question about your medication, they will reel off a list twice as long. If you are struggling because you have a wound that won’t heal, they have had to have a pig skin transplant… (that really happened)
To quote my brilliant step son, if you have been to Tenerife, they have been to Elevenerife!
I am poking fun a little here, of course we should all be sharing our stories. The more we talk, the better informed everyone becomes. But I am sure you know that one person who has always had it worse than you?! They are always negative and the drama llama levels are sky high and they seem to have faced every illness known to man and had every complication going and they are going to complain about it ALL.
Of course I want to know about possible side effects, I want to hear personal accounts of surgery and not just the ones that have gone perfectly! But there are some who are just SO negative that it can really bring you down, scare you, make you feel like this illness is the end of your world.
I think everyone’s idea of support is different and so all you can do is have your own filter. If someone’s story makes you feel terrible, it is probably best to not listen. You can find out about negative parts of an illness with it being in an entirely negative way. Support groups are meant to help, not hinder and so if you find yourself listening to a story that is dragging you down, remember you don’t have to listen! Cut the ties and float away from it for now!
I am sure that my stories and posts on here are not always everyones cup of tea. I totally accept that and would advice you use the same filter technique here too. If my posts are helpful, interesting, inspiring and make you feel good then fantastic. If it is hitting a nerve that day, turn me off!
Love Sam x