Pros and Cons of IBD Social Media
Social media is an overwhelming presence in most of our lives. Social media is really amazing when you think about it. You can find and connect with old friends, family, people who have similar interests, meet new people, learn new things, the list goes on.
However, when it comes to having a chronic illness, there are definitely pros and cons to being a regular social media user.
The biggest pro for me in this category would be that I no longer felt like I was the only one suffering with this debilitating disease. I mean, I obviously knew I wasn’t the ONLY person ever to have the disease, but I didn’t know anyone personally. No one in my life, thankfully, had a chronic condition or a condition that required alterations of diet, surgeries, hospitalizations, etc. No one understood what day in and day out unrelenting pain was like.
I am grateful that most of the people in my life couldn’t put themselves in my shoes. But, I still needed people in my life to understand, and social media helped me realize that tons of people understood what I was thinking, feeling, and going through. The moment I began reading other people’s blogs, tweets, status updates and comments about life as an inflammatory bowel disease patient was the beginning of a huge course change in my life.
I no longer felt alone in this world. I no longer felt like I was a crazy person for thinking some of the things I did. I no longer felt AS guilty for doing certain things to cope because I realized how common it was. I always have had ridiculous expectation for myself, like many of us, and I always felt like I was letting the people in my life down because I wasn’t where I “should” be in life. I had an entirely different plan in my mind about what my life was going to be like and I felt like a failure for not measuring up to that. Connecting with others made me realize that people don’t always follow a traditional path in life. In fact, I learned rather quickly that there was no “traditional” anything.
Social media helped put me in touch with the right people who have had a profound impact on my life to this day. It is because of social media that I attended events for people suffering from Crohn’s Disease or ulcerative colitis and was able to speak, in person, to another human being besides my parents about what I had experienced. And I noticed very quickly that as soon as you began speaking, you barely needed to say the rest because people actually had been through a similar experience themselves.There was no explanation needed. Everyone just understood not only the physical aspects of my disease, but the emotional toll it can take as well.
This made me feel empowered to share my story and help others in the process. A year or so after doing that,, I was able to post a picture of my stomach with my ostomy showing. And then, a few years later, walk around in a bikini with my ostomy (obviously) showing and not caring. I gained a tremendous amount of confidence from emerging myself in social media related to health and illness.
And lastly, so many of us are home a lot of the time, unable to sleep, in pain and/or are just bored because our bodies won’t allow us to be out there in the real world. Social media provides a wonderful distraction at anytime, day or night. The world becomes much smaller and feeling like you have friends (even if you have never physically met them) and/or a community of people who you enjoy communicating with can really bring a lot of hope into someone’s life.
As with everything, there is a drawback to social media when you suffer from a chronic condition, such as Crohn’s Disease and ulcerative colitis. It is important for caregivers to also be aware of some of the downsides of being so heavily involved in social media.
For starters, whether you are purposely trying to or not, you are likely going to come across other people who you are following or connected to in some way who are going to make you jealous. It is only natural to compare ourselves to other people and even though I love the quote “Don’t compare your behind-the-scenes to someone else’s highlights,” I am still guilty of this as well. If you are having a particularly bad day, even seeing other people with a chronic illness posting things they are doing or have planned can make you feel badly about yourself. Given how different inflammatory bowel disease is for everyone, there will always be those people who have the disease but are living a “normal” life. They work, they go out with friends and family, they travel, they exercise and/or compete in athletic events, they can eat whatever they want, etc. It could make a person feel like maybe they are doing something wrong because they are unable to work or be out and about a lot when in reality, it is usually nothing that person is doing. A caregiver seeing other people exceeding at a lot may also wonder why their loved one can’t hold a job or even go out to dinner. This can lead to a lot of misunderstandings through no fault of anyone.
There is also so much bad information out there. I cannot stress that enough. There are loads of people claiming certain supplements, diets, stress management programs, etc is the cure or key to happiness. That can be dangerous for someone who doesn’t truly understand their disease yet. It takes a long time to understand inflammatory bowel disease in general, and then you also have to become an expert in YOUR inflammatory bowel disease. A person has to learn that just because something works for a few people whom they have befriended on the internet doesn’t necessarily mean that even applies to them, let alone is something worth trying. They could have the best intentions but since IBD is not one size fits all, it is hard to know what is going to help someone or not.
You can also end up wasting a lot of time and money. Not to mention, if you are busy trying random things you read on the internet, it usually will prolong the time it will take you to get the kind of care unique to your situation. So, by the time you do end up seeking other forms of treatment, the disease state is that much worse.
People also, understandably, share a lot of their story and experiences on social media. That can be very scary regardless if you are a new patient or someone who has had the disease for 30 years. Reading through questions, comments, pictures, etc can make you think of things you never would have worried about otherwise.
At the end of the day…
As long as you understand the downsides to social media and factor that into your brain, social media is absolutely amazing and positively life changing for so many people with a chronic illness, like Crohn’s Disease and ulcerative colitis.