IBD and Guilt

When you are diagnosed with any type of chronic illness or something that requires you to need to be taken care of, guilt often comes with the territory. For me, I started feeling this way about four years after I was diagnosed with ulcerative colitis. The four years following my diagnosis were spent in the hospital, dealing with medications, multiple surgeries and complications, and just trying to get my physical health under control. Then, when I was 17, it became apparent that I needed to see a psychologist and that was the first time I ever said out loud to anyone how guilty I felt every single day for being sick and that my parents and brother had to take care of me and deal with me constantly.

I remember when that first came out of my mouth and the hours following that appointment were spent in my room telling myself over and over again that I would no longer speak about it. It hurt too much. It was much too painful to dig any deeper into just how much my illness had affected my entire family. So for a few years, I didn’t bring it up again and wouldn’t respond to any questions about it. As the years progressed and my physical and emotional situation became more and more unbearable, the guilt began to truly eat away at me until finally I broke down one night and told my parents the intense magnitude of my guilt. I honestly don’t remember exactly when that was but since that night, I tell my parents and every other medical professional who I come in contact with all about the enormous guilt I feel quite often. Just saying it out loud was helpful at first and it then allowed me to see how keeping even that small part of my story and my emotions private was detrimental to me.

The guilt I felt years ago and the guilt I continue to feel each day is real. It is very real and feeling like a constant burden on your loved ones can cause problems of its own. I know it definitely has contributed to my sleeping problems, migraines and stress level. Feeling like a constant burden has also made me incredibly angry since there was nothing I could do to change the circumstances and watching my family go through so much when there was nothing I could do was really devastating. Even though my parents and doctors continue to tell me that I didn’t cause my disease, or do anything to hurt my family and that I should have nothing to feel badly about….I still do. Deep within my core, I feel like the worst daughter, sister and granddaughter. I think that is why I feel the need to make my parents proud of me all of the time. The pressure I feel to meet expectations is my own, not my parents. They understand the challenges I have had to overcome, and the limitations I have right now. But I can’t shake the feeling that I am not measuring up to the person they always hoped and wanted me to be. This is obviously coming from me and I am sharing how I perceive things because I think there are a lot of you out there who think the way I do.

One thing that has helped me try to reduce the amount of pain I feel internally from all of the guilt, is to think about how I would respond to someone who told me that they felt like a burden because of a situation or circumstances that they had no control over. I mentioned that my grandfather has Parkinson ’s disease and that he needs to rely on my grandmother every minute of every day. I have tried to think about how I would respond to him if he told me that he felt like a drain on the family. I have often wished that the disease would just kill me so that my family wouldn’t have the added stress and pressure of taking care of me. I try to think about how I would respond to anyone who said that to me. And when I really think about it, my response would of course be exactly what everyone has been telling me for many years. I would tell him that he didn’t make himself to sick, he didn’t ask for it and he is doing everything in his power to make the best of it. He has to lean on my grandmother more than he would like, but that isn’t his fault. He has a devastating illness that will understandably affect his family and friends. When I try to think about the enormous amount of guilt I feel and spin it as if someone else was sharing their feelings with me, it helps me come to grips with things. I know rationally that I didn’t cause my disease and that nothing I did or didn’t do would have made things any easier for my family. I am my parents’ daughter, my brother’s sister, and my grandparents’ granddaughter….what affects me, affects them; That is what a family is. So, while I completely understand why anyone with a chronic illness or just any physical or emotional condition that requires them to be taken care of, would feel like a burden on their loved ones…I want you to turn it around and imagine if someone you love said that to you. How would you respond? Would you blame them? Or would you do everything in your power to make sure they know how much you love them and that there is no reason for feelings of guilt to take up anymore brain space? If you are anything like me, the answers you give will put things in perspective for you.

  • Jodi

    and they would do it all again. You are so loved Marisa and your family could not be more proud of the woman you are today!

  • valerie Starshak

    Marisa,

    You are very much loved and cared about deeply by family and friends. Even if everyone were healthy, we would all still need each other. Otherwise everyone would be living in their own little bubble. Relationships are all about taking care of each other and it goes both ways in a relationship. Even in some wedding vows, they say will you love each other in good times and bad times, for better and for worse.

    I have a daughter with a mental illness who is very dependent on us and will always be that way. She is who she is and I will always love her no matter what she does or happens with her. We keep plugging along one day at a time.

    Guilt is something I struggle with a lot inside of me. I do not think it is very productive, but the feeling is real and it is there. What you feel is what you feel.

    If I think of anything that helps me when I am feeling guilty I will pass it on. It is very difficult to deal with.

    You are amazing and strong, Marisa-Don’t forget that. You are loved deeply by so many people, just they way you are. What you have been through has made you the person you are today.

    I am so proud to know you.

    I love you.

    I will always be here for you-no matter what.

    Keep writing-you are helping so many people.
    Val
    xoxo