“Sorry guys! I can’t tonight.”
You hit send and your heart drops down somewhere near your navel.
Despite the fact that it’s the truth, that shadow of guilt looms overhead. It taunts you.
They’ll never understand. Things will never be the same again and all you’re going to do from here on out is disappoint people.
At least that’s what that voice in your head tells you.
Sadly, many people suffering from chronic illnesses such as Crohn’s Disease and Ulcerative Colitis have these thoughts and feelings. Feelings of guilt, feeling like a disappointment, feeling as though you’re letting others down, or having to flake out at the last minute. Having to miss family get-togethers during the holidays makes you not only feel guilty for letting others down, but also jealous for the life you used to live. There are just some days you cannot physically get out of bed.
One morning right after surgery, I was walking down the stairs when I slipped and landed on my backside. It hurt. A lot. My husband, awakened by my scream, ran out and found me sitting on one of the steps. It looked as if I was perfectly fine because of the way I had landed. Instead of rushing to my side to help me up, he glared angrily at me. I knew then and there that it was a bad moment for this to happen.
“You should really be more careful! Don’t you care at all that you could have knocked your j-pouch loose? What were you thinking!?”
Through hurt tears, I tried to explain what happened. My new, comfy socks were slick and I was more concerned about my stoma than my j-pouch. But because he was in a weak moment, he wouldn’t have any of it.
“You just need to get better and stop being careless.” He stormed back to the room and slammed the door. I cried and cried because I felt like an awful burden. If you know my husband, you’ll know that he has one of the kindest most gentle spirits of anyone. His heart of gold and hearty laugh draws others to him. Nevertheless, negative thoughts started swimming through my head. “He doesn’t deserve to be treated like this. He doesn’t deserve this life… and I don’t deserve him! I’m the worst person ever!”For the record, the big idiot (whom I love dearly) has fallen down those stairs more times than I have.
Many of us feel not only guilty for being sick, we feel like burdens to our friends and family. I remember times where I was so sick and unable to do anything for myself. I am a fairly independent person when it comes to caring for myself, so it was frustrating for me when I had to depend on others. I didn’t want to be a bother. I didn’t want to hold my husband back from living his life. Yet here I was lying in the bed day after day unable to even sit upright. There were so many parties and times he could have been hanging out with his friends. Instead, he was stuck with me.
It feels as though our illness becomes a part of who we are. Every day we battle our own bodies. Others must “pick up the slack” when we are down for the count. Most of us understand that diseases are neither fun nor easy to live with, but it makes our suffering that much worse when we let other people down. We miss dance recitals, family BBQs, holidays, birthdays and weddings.
We feel like we’re bad people because we see how much our diseases hurt, burden and disappoint our families and friends. But that isn’t true! Your illness sucks. Your illness affects everyone around you. But it doesn’t make you a bad person.
The important thing to remember is that it is not your fault you have a disease. I will say it again: having an autoimmune disease is not your fault! There is nothing you could have done to prevent your disease, no matter how badly you wish it were true. Illness just happens to be in your genes. These are the cards that you’ve been dealt. The best you can do is pick yourself up and keep going. Your disease does not define you… but it can help you grow.
So how do you rid yourself of these feelings of guilt or feeling burdensome on your family? You will probably never be able to completely get rid of these feelings, but there are some things you can try to remember in your moments of weakness.1) Do not let your disease define who you are. You are not a disease. You have a disease. There’s a big difference.
2) Give yourself a break. Sometimes your body knows better than you do… if you listen it will tell you what it needs. Sleep, food, nutrition, exercise…
3) Don’t push yourself. You know your limits. Don’t be stubborn, be smart. And when in doubt, it’s probably best if you take some time to rest.
4) It’s ok to not be ok. You will have your moments of weakness. You will have moments when you don’t have the strength to pretend to be normal. Let it be ok!
5) Remember the importance of forgiveness! People who love you won’t always understand your disease. They will inevitably and unintentionally say things or do things to hurt you. No one is perfect. Forgiveness does not mean let people step all over you. It means giving people room to make mistakes without holding their shortcomings against them. They are only human… and so are you, by the way! Also, forgive yourself. You can’t give life 100% all the time. Don’t beat yourself up over it. Life happens. Accept things as they come and always look for the positives.
So true.