Keeping Your Disease Private Impacts Caregivers

When I first started talking openly about my journey with ulcerative colitis, the title of my blog was “Keeping Things Inside Is Bad For My Health.” The reason I chose this very lengthy title was because I had kept quiet about my disease for 12 years. I saw how detrimental that was for me. I know a lot of you living with a form of inflammatory bowel disease (IBD) have a difficult time sharing your disease with others. This often leads to isolation, depression, anxiety and feeling like you can’t really connect with anyone. After all, if you aren’t able to share something that has impeded on so much of your life, how can anyone get to know the real you?

I started thinking about this over the past few months. The more I thought about it, the more I realized that it wasn’t just me who had to hide who I really was with the world but it was my parents/caregivers as well.

Keeping things private

I was always a very private person. I wouldn’t even allow anyone besides my parents to visit me in the hospital. I never wanted anyone to see me in that vulnerable state. This included my brother and grandparents who I was very close with. I also didn’t want my parents sharing any details with their friends or people close to them. I know my dad discussed things more openly with his friends because they were people I didn’t know. A lot of my moms friends had kids my age and I was always worried that it would “get around” because of that.

Both of my parents respected my wishes for things to be kept within my family. But I honestly wish I had given them more leeway to talk about what was going on.

The impact on my parents

I understand now more than ever how much my illness has impacted my parents. It prevented them from taking trips or making a lot of advanced plans. It caused my mom to want to retreat or withdraw when things were so awful because she couldn’t handle anything else. Just like I always felt like I wore a mask in front of other people, I am sure that is how my parents felt too.

I know my diagnosis impacted my family in so many ways and definitely in more ways than I can share in this one article. However, what I didn’t really understand until recently was how much my need to isolate and keep my disease private impacted my entire family.

Feeling disconnected

If I could go back in time, I would tell both of my parents to talk to whomever they wanted about how they were feeling. I can only imagine how much my parents felt disconnected from the world because of all that was going on in our family. While it was happening to me and it was my decision to keep things private, I shouldn’t have put such demands on them. I should have just told them to ask whomever they shared things with to not bring it up around me. That way, my parents would have had a much-needed outlet.

I know hindsight is 20/20 and no one can go back in time. I bring this up because as patients, it is very common for us to only focus on ourselves. I don’t mean that in a negative, self-centered way in the least bit. I just mean that if you are someone who doesn’t want things about your body and life shared with others, please be mindful of the fact that your loved ones may need to expunge some of their emotions also. Our loved ones need to vent and get things off their chest too.

If at all possible, do what you can as the patient to allow them to share their feelings with those closest to them. It doesn’t mean you need to talk about it with anyone you don’t feel comfortable. But give your caregivers and loved ones the option. It may make them feel stronger and better able to handle the challenges thrown their way.