Beyond the physical pain of a chronic illness can come emotional pain and feelings of guilt as well. Alexa, who was diagnosed with Crohn’s disease at age 12, hid her physical pain and worried how putting her health first would affect her relationships. As she’s matured over the past 10+ years, she’s accepted that her health – including her mental health – has to come first. She’s learned to let go of the guilt that comes with chronic illness, and developed her own coping strategies. Here, she shares her wisdom on why those with a chronic illness may feel guilt, and how to cope.
Many people with a form of chronic illness experience guilt, which I think is uncalled for, right? It’s your health! So to feel guilty about doing what you need to do to keep yourself healthy… seems silly, in theory.
Yet despite how silly it seems, I’ve felt intense guilt about my chronic illness more times than I can count, and I know many others who have, too. Guilt seems to be almost as prevalent in chronic and autoimmune illnesses as the pain itself. Guilt, it seems, is one of the worst symptoms of a chronic illness.
Why Do People With A Chronic Illness Feel Guilt?
If you don’t suffer from a chronic illness, you may be confused as to why I’m suggesting we’d feel guilty for being ill. So here’s some insight into the brain of a chronic illness sufferer and a few of the narratives that go through our heads on a daily basis.
- Feeling as if you are a physical burden to the people who are taking care of you. Chronic pain comes in a variety of forms, but it can be debilitating. Those of us who need the help of caretakers can feel like we’re asking too much of our family and friends, and even draining their energy.
- Feeling like a financial burden. Whether you’re young with parents who can cover your bills, or older with a spouse and a family, the cost of a chronic illness can be enormous. Oftentimes, those with a chronic illness seek alternative treatments, which are not covered by insurance, or if we’re unable to work, we feel like a financial burden for being unable to contribute to our household income.
- Feeling guilty for cancelling plans. It’s normal to make plans days, weeks, even months in advance, but if you have a chronic illness, it’s never certain how you’ll feel from day to day. When we have to cancel plans, we feel bad about letting our family or friends down, disrupting the plans and not being able to socialize. Often the pain or fatigue associated with chronic illnesses is not noticeable, which makes it hard for others to understand that it’s a real illness.
- In addition to cancelling plans, some of us may be hesitant to commit to plans in advance at all. It’s easy to feel like you’re letting your friends down or you’re simply “no fun.”
- Calling in sick to work. It’s bad enough to let your friends down, but it feels terrible to let your boss or co-workers down as well. Not being able to go into work can also cause fear, worry, anxiety and stress, which are never going to help us heal in the long run.
- Guilt over food restrictions. If you live at home and enjoy meals with a spouse or family, special meal requirements that you use to manage your chronic illness may make you feel guilty. Family members can be unreceptive to change, and it can feel like you’re putting the complications of your own personal illness on them. Second, going out to eat or going to a party can be tricky. The types of restaurants you can eat at can be limited, depending on your food restrictions. Chronic illness can make us feel guilty if we’re always dictating where we should go out to eat. Likewise, when visiting someone’s house, it can be uncomfortable to have to ask what is being served or to bring your own food. It can make us seem ungracious or like a food snob!
- Guilt over how we care for ourselves. This chronic illness guilt can be more pronounced for those of us that have taken charge of our health, versus those with the mindset that our disease is totally uncontrollable. When we’re not feeling well, it can feel like we aren’t doing enough, or doing the right things. In reality, we may be doing all we can in the reign of our control.
When any of these scenarios are playing out, chronic illness guilt is often self-inflicted, which is a hard pill to swallow. But when family or friends add to our feelings of self-blame (knowingly or unknowingly), it makes those feelings come alive and places a much heavier burden on the one with the illness.
I’m lucky that I have only had supportive friends and family, but I’ve talked to many people who experience just the opposite. They struggle with loved ones who question why we aren’t working, why we can’t keep plans or why we have no energy… because they can’t see the source of our pain. It’s critical that those of us with chronic illnesses have people in our lives who try to understand how we feel.
I have a chronic illness and I feel guilty about it. How should I cope?
How does one with a chronic illness get past the guilt? It’s not easy—I won’t lie. I still feel guilt occasionally. However, the longer I live with Crohn’s Disease (and the older I get in general), the less I worry about what people think of me and my decisions.
Here’s my tips for keeping your focus and your health front and center.
- Remember that you are the most important person in your life and all aspects of your health come first, whether it’s mental, physical or emotional well-being. So, if you need to cancel plans with a friend, keep in mind that you need to do this for yourself and do not feel guilty.
- Keep a journal. I keep a gratitude journal where I list things I’m thankful for. You can write in this daily, or whenever you feel like it. Seeing the great things in my life, whether they’re big or little, reminds me of the abundance in my own life, despite the fact that I’m living with a chronic illness.
- Realize that you can contribute to your loved ones’ lives. Maybe you can’t go out clubbing with your friends, but you can offer them advice and support, share laughs and enjoy activities that work for you. Maybe you can’t work full time and feel guilty that you aren’t helping your spouse support your family. Yet, if you are the one cooking healthy meals, doing housework, driving the kids and helping with homework, those are valid and vital ways to support your family.
- Remember that your friends and family are around you simply because they want to be, and let that ease some of the guilt that comes with your chronic illness. Before you start feeling bad for letting them down, or worrying that they don’t believe that you’re really sick, remember that everyone in your life cares about you and that you are loved!
Living with a chronic illness can cause guilt, which may hurt just as much as the physical or other emotional pain. I hope that my coping strategies will help those who may be struggling with a chronic condition, as well as those who have a friend or family member with a chronic illness. We can never go wrong in offering a little extra love and understanding, both for ourselves or those we care about.
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