IBD Social Media Sites: Friend or Foe? (separate from #NHBPM)

I know we have all heard the pros and cons of living in the age of the internet and social media. I want to skip all of the arguments that I believe have been stated a great deal already by many different types of people over the years and get right to how I feel social media has impacted those of us dealing with any type of illness or medical situation. For me, social media has been great. I have met my best friends through facebook support sites. The power of anonymity also makes social media sites really helpful amongst those of us with IBD specifically. Ulcerative colitis and crohns disease are illnesses that affect your digestive track and the majority of the symptoms are bathroom related. These types of issues are incredibly difficult to actually talk about in person so it is nice to have the option of being connected to a community via the internet. I have found that once I felt comfortable being able to talk with other people who have similar experiences online, that it was a lot easier once it came time to be open about them in person.

For the most part I believe that social media and the internet have really benefited the health and medical community. However, I can’t help but wonder if posting a medical question on the internet is really beneficial. I have been thinking about asking some questions myself on a couple IBD/ostomy support groups on facebook but I find myself being more hesitant than I have been in the past. I just feel like sometimes when I throw a question out there to the entire community, I end up feeling more overwhelmed and flustered than anything else. The way I see it…our bodies are all unique and will respond to different medications, surgeries, etc differently. When someone answers a question on the internet, the person asking for help has no idea what the background is on the individual who is responding. While it is extremely nice and caring to take the time to help someone with a question they have about a topic that is familiar to you, I think it is important that we take the responses from our community members with a grain of salt. Their experiences and opinions are extremely valid and usually very well intentioned. However, I find that I am often bombarded with various opinions.

If you ask a premiere health website a question and receive a response from a professional, how do you know you can trust that person? They may ask you to give a bit of background information prior to them giving you an answer to your medical question but is that really enough? I need my questions answered by someone who knows me and who knows the subject backwards and forwards. It is interesting to hear what a random physician thinks about a certain situation and can often validate an existing opinion about how to possibly proceed with whatever treatment necessary but it isn’t a full proof way to deal with your health. You need to actually see a doctor and speak with someone in person. That person should know you and your story and be in tuned to what has worked in the past and how your body has responded to whatever treatments were previously given.

The internet and social media has done wonders for the health community. We are able to make and watch videos on our area of interest, read about other peoples’ experiences, and look up a lot of information in a short amount of time. It also helps those who have a hard time talking about their disease to be able to feel less alone and hopefully start the “coming out” and acceptance process. After mulling it over quite a bit, I have decided that unless I need a fact checked, I am no longer going to throw out any of my questions to social media sites. I find that I am just too overloaded with information whenever I do that. For example, when I looked up pyoderma gangrenosum after I was diagnosed with it, I saw so many things that scared me to death. I even asked a couple questions about it and got such varying answers that it left me feeling powerless. There was no reason for me to know every single thing about it. I wrote in a previous post about how sometimes ignorance actually is bliss and I think that is the case for me here http://keepingthingsinsideisbadformyhealth.wordpress.com/2012/10/16/ignorance-actually-is-bliss-sometimes/. There is usually no “right” way to go about dealing with the numerous questions and situations those of us with crohns disease or ulcerative colitis have to deal with. Because of that, I don’t want a response from someone to end up causing me to doubt myself and my first instincts.

I don’t want anyone to come away after reading this and think that I don’t believe people should post their questions on the internet and social media support sites. I do think it is a great way to really learn. I just know that for me personally, it is too upsetting to hear certain things. I have been hit so hard and basically anything that could go wrong medically has. I continue to feel like I will always be in the one percent of IBDers who ends up with these uncommon complications or random issues. So, from now on I am going to do my best to follow my gut and anything specific that I need to ask, I am going to ask a medical professional directly.

It is truly amazing how much being sick for so long helps you to really understand yourself.

  • Stroy52680

    Wonderful!

  • val0525

    Great post, Marisa. Sometimes we need to follow ouir “gut” feelings. No one knows your own personal history like you do.

  • http://findmein2013.wordpress.com Amanda Brooke

    so true twinny. so true.

  • Jodi

    I agree. I have problems with people diagnosing themselves from web Md. I think it can be a good place for basic information, but as you said, every body and every history is different. You need to speak with a real person and be able to verify. I am thankful that social media and the internet allows me to be on this blog and see and hear your thoughts and feeling. (and… I met my husband on the internet) so I know there are pros vs. the cons
    You have done a great job for yourself.

  • http://www.colitisandme.blogspot.co.uk Victiria Marie

    I think that support groups are great for a bit of emotional support but if you post a question when in reality you should be sitting in the emergency room that’s a bit silly. These sites are great for a ‘do you do this also’ kind of question but as you said if its to do with meds or a question that should be reserved for a doctor then its prob not to post and seek medical advice instead. Great point raised :) Xx

  • http://risaroo86.wordpress.com Marisa Lauren

    Agreed!!