“It’s nothing to write home about.” Looking at those words, as I typed them just now, LITERALLY turned my stomach. Why? Oh sorry, I’m not asking myself why it turned my stomach…I know the answer to that question. I am asking why did I ever feel the need to muster those words. Why did I feel the need to down play how good I feel? The answer, remission guilt.
Now, before you get all funny with me, YES, remission guilt is totally a thing. It’s like survivor guilt, only you don’t cheat death and have someone else not so lucky. With remission guilt you get a temporary reprieve from your horrible disease and feel guilty that those around you are not so lucky. I know what you’re thinking “where does this woman get these things?” Well, my mind. I sit around and think about things and things like this come to me. Yes, you read that correctly. I sit around and reflect on things…for absolutely no reason, and try to make sense of them. Now back to it, remission guilt is totally a thing.
A few days ago my sister called me to check in and see how I was feeling. Excited to hear a peppy me, she asked “don’t you just love being in remission? ” She continued, “you look amazing. You have so much more energy…and your hair has grown back so fast.” With a flat tone I replied, “it’s fine. Nothing to write home about.” I then immediately move to her and said “how are you feeling? Are your new meds working to control your Ulcerative Colitis? They will probably have you back in remission in no time then we can kick it.” Before I could finish my attempted pep talk, my sister interrupted and asked “why do you keep doing that?” Confused, I asked “doing what?” In her raspy agitated tone she asked”why do you keep downplaying how good you feel because you think it makes others feel bad?” She continued, “listen, you have been deathly sick for years, YEARS girl. You deserve every minute, hour, day, year or whatever you get of remission. You deserve it more than anyone I know.” Even more confused, I simply replied, “I’ll call you back.”
I ended the conversation abruptly because I needed to do some quick soul searching. Was my sister right? Was I was downplaying how good I felt so other chronic illness warriors around me wouldn’t feel bad? The more I reflected on my actions since returning from the Mayo Clinic, the more troubled I became. Friends, my sister was right.
Now, I know I am not the only person that has experienced this…right? Maybe rather than down playing how good you feel, you avoid your fiends that are not in remission because you don’t know if they will be jealous of your reduced pain. Or, maybe you simply go around your normal group of friends, but refuse to discuss your new found remission or discuss how good you feel. Hopefully this is hitting some with someone, because this was all new territory for me. See, this remission zone is VERY new for me. I mean, I have had symptoms of my horrible diseases since I was 7 year old without ANY reprieve. While I am happy to be in remission with reduced pain and more energy, after close examination I have found myself extremely sad that others do not have the same good fortune. Honestly, I never realized just how guilty I felt about being in remission, let alone how I was demonstrating my guilt.
Well, fortunately, I am learning this new normal. As part of that, I am learning that remission is an accomplishment to be celebrated. See, it can leave as swiftly as it comes, so it is very important to celebrate while you can. I’ve also learned that you should help those that are not where you are. Since I am able to do more, I helped clean my sister’s house because she can’t. All the things I needed someone to do for me when I was not in remission, I offer to do for her. I also use remission as an opportunity to be a little bit better as a friend. I hangout with the people I didn’t have the energy to see, I call people I could never talk to longer than 5 minutes, and I encourage and visit my fellow warriors.
Friends, this road with chronic illness is a winding one with lots of unexpected turns. This turns will CONSTANTLY put you in unchartered territory. But, you have to be flexible, willing to self-evaluate, and willing to learn and keep going. So, I am so here for all the turns and loops that come alone with this remission hing. Don’t let remission guilt consume you. Take advantage of your remission…you deserve it. Everyone deserves a reduced pain or pain free existence…even if it only lasts mere minutes.