About 15 years ago, I had just started an elimination diet to figure out why my IC symptoms were worse when a college friend called me. She was going to visit from out of town and wanted to go out to dinner. For a moment, I froze. I wasn’t yet in the phase of the elimination diet that I could easily go out to eat. I was monitoring everything I ingested and how it was prepared. My mind scrambled to come up with ideas without telling her the real reason I didn’t want to go out to dinner. I suggested instead that she come to my house for dinner, deciding I’d prepare safe foods and she’d be none the wiser.
This person was a good friend. She wouldn’t have made fun of or belittled me. But, we were young, and I also knew she wouldn’t understand my health journey at all. And, well, I was just plain embarrassed to talk about it. I didn’t want to sound whiny and sick.
Does that sound familiar? I’d guess anyone who has lived with a chronic illness — especially an invisible one — for any amount of time has at least a few stories like this to tell. While I put all sorts of names to my rationale of why I didn’t want to share how much IC was impacting my life, one main emotion was actually at the root of it all: shame. I didn’t identify shame then, but I can spot it now as I look back.
Shame can be such a part of our lives with chronic pain or illness that we don’t even notice it. However, we must pay attention. We must find ways to work through our feelings of shame. If we don’t then we are putting ourselves at risk for various complications to both our mental and physical health. Plus with IC symptoms often being triggered by stress and anxiety, anything we can do to alleviate those feelings is important. The more we can calm and relax our bodies (and central nervous system), the better our symptoms will be. Knowing how to manage our emotional and mental health is just as important for managing our IC symptoms as knowing what foods cause us to flare or what medications are helpful.
What is shame?
Simply put, shame is feeling embarrassed or humiliated when you perceive you’ve done something improper or wrong. It’s actually a good thing for society in that shame keeps people in check and following laws and social norms. Feeling shame for wrongdoing can help us avoid doing things that push others away.(1)
Shame is different from guilt in that guilt relates to a specific action and implies remorse. On the other hand, shame relates more to who you are inside and cuts deeper. Even after you’ve made reparations for a mistake, shame may persist. Shame shifts to toxic when it continues and changes the way you see yourself.(2)
There are a variety of reasons that shame can be toxic or chronic, including childhood events, trauma, rejection, the words or actions of others, not meeting overly high standards you set for yourself and more.(1) But there are also reasons those of us with chronic pain can feel shame. Being unwell in itself tends to make people wonder what you did to cause your illness or whether you’re doing enough to “cure” it. And that switches from the body working incorrectly to something being wrong with your character. We can take on shame that we are somehow the cause of getting IC or continuing to have it.(3) Sometimes we even assume other people are judging us harshly because of our health, even though they don’t say a word.
The impact of shame
More than just a bad feeling, shame can result in a variety of things that aren’t good for your mental or physical health. Shame can cause you to avoid relationships, suppress your emotions, feel depressed, feel anxious, have low self-esteem, be less likely to take healthy risks and more likely to relapse into bad behaviors or habits.(4) With shame, your internal voice tells you all the lies about yourself like they are truth. You start believing things like you’re worthless, whiny, the cause of your IC, unlovable, stupid, incompetent and on the list goes. All of that can lead to anxiety and depression, which can make you feel more shame. The vicious cycle continues around and around.
Within those of us who have chronic health issues, shame can also make us want to hide our illness. We do our best to appear healthy; as a result we spend much time and energy focusing on our appearance, speech and behavior with a group of people. It drains us and causes us to miss out on some interaction. Then when we are flaring or having a particularly difficult time and can’t pass ourselves off as well, we often choose to avoid social interactions all together.(3)
Working through shame
(Before we delve into this topic, I would be remiss if I didn’t tell you that overcoming shame can take a lot of work. Some shame can be so deep-rooted and buried that you need to seek professional help. Other shame can be hard to identify. I strongly urge you to reach out for professional help from a mental health or medical provider. None of these suggestions are medical advice or meant to imply that dealing with shame is something that should be handled on your own.)
Identify shame and its triggers
Finding victory over shame is possible. As with so many things, the first step is identifying the shame you feel. You have to acknowledge whether shame is a component of your struggle and what is causing it. Pay attention to how your body reacts when you feel shame. When you notice that you’re reacting to shame, stop and analyze what triggered those feelings. Paying attention to your personal triggers helps you identify what is behind your shame and how you can avoid those same triggers in the future.(3)
Next, once you have identified the triggers and what is behind them, think about what you’re afraid of with your feelings of shame. Think about what your internal voice is telling you. And then think about whether your internal voice is telling the truth. It could be true.(3) For instance, if you’re thinking that someone might think less of you because you have to go to the bathroom so often, that could be the case. But, you also have to think about whether that matters. The people who love and care about you won’t be bothered by it. If someone is bothered by it, do you really care or need their approval? (The answer to that is a solid NO!)
If you are worried about what your friends are thinking about your health issue (like maybe you are a downer or too much trouble), then talk with them about it. Be honest and open that you are struggling with feeling ashamed because of your health issues and their impact. Most likely, your friends will reassure you that they value you and your friendship.(3) After all, everyone has some sort of struggle.
Change your internal dialogue
Another big part of working through shame is dealing with your internal dialogue. We can say such mean things to ourselves that we’d never say to other people. Shame often rears its ugly head in the words we tell ourselves that we start believing as truth. We may think things like:
- “I’m so stupid.”
- “I always mess up.”
- “I’m so weak that I ate chocolate and am now flaring.”
- “I’m hopeless. I’ll never get better at managing my IC.”
- “Nobody will ever want to be with me when I spend half the evening in the bathroom.”
We’ve got to change up those words and recognize they are thoughts or feelings. They are NOT truth. We need to find ways to shift our thoughts, attitudes and beliefs about ourselves. We can change our thinking to have a more positive spin:
- “I’m doing the best I can.”
- “I made a mistake, but I’m learning.”
- “Next time, I’ll be prepared with my own sweet treat.”
- “Managing IC is a lot of work. Some days are better than others.”
- “People who truly care about me don’t mind that I have to use the restroom so often.”
Seek out others
Getting help from others you can trust is important as you work through your shame. Seek our friends or loved ones who are caring and compassionate. Being able to talk openly about your shame makes it shrink. Suddenly what was so big and definite in our heads gets smaller as we say it out loud. And it gets smaller still as those who love us reassure us. If you aren’t comfortable talking about shame with others or don’t have safe relationships in which to share, consider writing about your feelings, creating art or finding an group online to connect with.(4)
You can also seek out professional help. Mental health professionals are trained in dealing with shame and can help you work through difficult spots. Since other mental health struggles like depression and anxiety go along with shame, they can help with all of it.(2) There is absolutely nothing wrong with seeking out the help of a professional. Just like you visit your urologist to manage your IC, you can visit a mental health professional to manage your mental wellness. It really does all work together.
Be good to yourself
Working through any mental health struggle takes time. Some days are better than others. You may take one step forward and two steps back sometimes. However, you are worth it. You didn’t ask for IC. You didn’t ask for shame as a result of IC or other life circumstances. But you can learn to live and thrive in spite of the challenges. Take time to do the work and take care of your entire self.
References
- Cuncic A. What is Shame?. Verywell Mind. Updated May 27, 2021.
- Raypole C. Where Toxic Shame Comes From and How to Work Through It. Healthline. Sept. 23, 2020.
- Virant KW. Chronic Illness and Shame. Psychology Today. March 17, 2019.
- Clearview Treatment Programs. 5 Ways Shame Can Shape Your Life. Feb. 13, 2018.
