Recently, a friend reached out to me and asked, “What made you decide to share your diagnosis with everyone?” My initial response was because I wanted to find others who may have the same thing as me and may be too afraid to reach out for help. In short, I did it to help others. But for some reason that answer didn’t settle well with me. Days later, I am still left pondering this question and the real reason behind my openness about my disease.
When I posted on social media for the first time about my journey with colitis, I wasn’t ready to share. I knew I wasn’t ready to tell everyone, but I thought it would somehow help me cope if I received support from my family and friends. At the time, I was going through stages of grief as one might after being diagnosed with a lifelong disease. I was in the anger/bargaining stage. I was feeling helpless and vulnerable because I thought I had my disease under control, which I did for a couple months after diagnosis, until I experienced my first flare-up. I was looking for ways to make me feel better and understand how I could get to that acceptance stage. Truth is, I only recently have felt a taste of acceptance and it’s been a year and a half! I never felt as though I went through the stages of grief one by one, but rather back and forth from anger to denial to depression to bargaining. Even though I’m at acceptance, I still experience anger and denial some days.
There were definitely some pros that resulted from my openness on social media. I received an outpouring of support and even found some people with similar troubles that I could talk to. All I really wanted was to talk to someone who would understand me, and sharing gave me the courage to do that. I also got a lot of questions from friends who were genuinely concerned about me and wanted to learn more about what I had. While explaining a disease like colitis isn’t easy and rather embarrassing at times, it helped me realize that many people don’t even know what it is. That fueled a fire in me to bring awareness to this disease. More and more young people are suffering with IBD but many don’t even know it because it’s embarrassing to talk about. Lastly, I found that sharing with people made it easier to make plans with friends because they were aware of my boundaries and foods I could or could not eat. They always look out for me and are willing to find things to do that fit my lifestyle.
Of course, there are cons to sharing a scary, debilitating disease. One of those being judgement. I have experienced some judgement about my weight (I initially lost about 10 pounds at diagnosis), but I know more judgement happens implicitly. There are times when I try to downplay my symptoms because I don’t want to be thought of as a gross person. Trust me, I would much rather not have this disease, but it is a part of my everyday life and that’s not going to change. There are things I cannot control – this being one of them. If that makes me gross, then you really don’t understand. Another con is feeling like a burden to family and friends. If I’m having a bad day and can’t hang out with my friends or family, I feel guilty and like I ruined the day. Putting that type of guilt on your own shoulders is not a good way to cope and shouldn’t even be done in the first place. It gets you nowhere and just causes unnecessary sadness. Of course I knew that not everyone would understand, and I was okay with that. There were people that were pulling me down rather than lifting me up and it was an easy decision for me to get rid of that negativity. The people you surround yourself with are so incredibly important, and I can’t stress that enough.
After pondering this question that I am so glad my friend asked, I realized that I shared my disease for myself. I did it to help me cope, to give me a boost of morale that I could fight and come out a warrior, and to get closer to accepting my new lifestyle. I had to make so many drastic changes in my life because of my disease that I otherwise would not have done. As a high schooler, I imagined my life being so different right now. But instead, I have been led down a different path and I like that path. I’m happy where I’m at and not ashamed. I truly believe everything happens for a reason.
I will continue to be open about my disease – one, to be an advocate for others and two, to give myself the strength to fight everyday. I have realized that community is huge for someone fighting an internal disease and I thank all of you that have supported and respected me through this time. I appreciate you more than you know.
If you are thinking about sharing something on your heart, I ask you to think about the people around you and who really needs to know. If it’s something you can’t avoid when going out with friends, then tell them. You might feel better afterwards and realize that you do have a huge community backing you up. If you aren’t quite comfortable yet, then don’t. There is no rush to these things and finding the right time is key. Ultimately, it’s about focusing on YOU!