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18 'Taboo' Thoughts About Chronic Illness You're Not the Only One Having

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Editor's Note

If you experience suicidal thoughts, the following post could be potentially triggering. You can contact the Crisis Text Line by texting “START” to 741741.

At times, it can feel like there are unspoken rules about “how” to be sick – like “always stay positive!” or “be grateful, because it could always be worse!” People with chronic illness seem to have these expectations imposed on them regarding their attitude and their behavior – but these expectations often seem to ignore the complexities of what it’s like to be chronically ill.

This pressure to feel or be a certain way can be damaging, because if someone with chronic illness does experience thoughts or feelings they aren’t “supposed” to experience, they may avoid opening up or reaching out if they need help and support.

The reality is that we all have “taboo” thoughts from time to time – it’s part of being human. They may not be considered “socially acceptable” or constructive, but they’re normal, and acknowledging that they’re there can often be the first step towards learning to cope with and manage them.

For those who have intrusive, “taboo” thoughts about their chronic illness, we wanted you to know you’re not alone – so we asked our Mighty community to share ones they experience. If you struggle with any of the following, we encourage you to talk with a trusted loved one or medical professional. Your experiences are valid, and there is no reason to feel guilty or ashamed.

Here’s what our community told us:

  1. “I actually look forward to procedures that require anesthesia because I get to go right to sleep. That’s so sad to me.”
  2. “Sometimes I think fondly of my surgery recovery periods… because I got unlimited rest and plenty of pain meds.”
  3. “I feel guilty whenever I feel like I’m enjoying myself. Like, ‘you’re chronically ill so you can’t be allowed to have good days or else people will assume you’re better.’”
  4. “[I worry] nobody will love me because I’m sick.”
  5. “I think about how much I dread going to the doctor. I hope I have enough symptoms to have them believe me and take me seriously. But I don’t want enough symptoms and hurt going on to warrant a crash. It’s complicated. I also am scared to death of my fiancé getting it one day. I am paranoid of my future children getting it too. I’m scared to have children.”
  6. “I get scared for the future trying to picture dealing with this when I’m older and/or alone.”
  7. “My taboo thoughts? I wonder if I am getting payback for all the things I’ve done in my life, or maybe I’m [being] punished for something. I know it’s not my fault, but sometimes my pain is so bad and I’ve seen my life finished so much that I really think I’m paying for something.”
  8. “I think pretty regularly that I’m a burden to everyone around me, and that if only I wasn’t sick. I have been known to think I would be better not being here, not that I want to die, just that my life isn’t exactly worth it because I don’t really do anything. I’m ‘failing.’”
  9. “Sometimes thinking that my family would be better off without me, because of all the hassle and cost that comes with me and my many health issues.”
  10. “Not suicidal, but I often wonder why I continue to live in excruciating pain. The meds I’m taking no longer work to alleviate the pain like before and thanks to the ones who have made getting opioids (or increasing current doses) hard for those of us who truly need them I can’t get a higher dose or a change to something else to help my pain. My doctor is under constant scrutiny by the Drug Enforcement Administration which makes his job harder. My overall pain level is a constant 8 and I don’t sleep well because of the pain. This is no quality of life. At all. Why bother going on if each day is going to be one constant struggle?”
  11. “How much pain for how long is OK before it’s acceptable to just give up?”
  12. “Wishing someone else was sick instead of me. Wishing someone else had to deal with everything that comes with being sick, so that I don’t have to anymore. All of the pain and fatigue, the judgment from everyone, all of the pills and procedures. Most days I wouldn’t wish it on my worst enemy, but sometimes I wish the people who judge me could suffer instead of me. Then they would know what it feels like.”
  13. “My taboo thoughts have always been that I hope my tests come back showing something. More clues as to what is going on or why it is happening. Most of my test results come back normal or just ever so slightly off. Nothing is ever off the charts or crazy enough to get the attention I feel I need. Many people always wish for that normal outcome. After 12 years, I hope they come back abnormal. Anything that could start a trail of breadcrumbs to untangle the mess that is my body and all the chronic illnesses I face daily.”
  14. “Any drug that makes me sleepy or slightly ‘stoned’ I love.”
  15. “I don’t usually express the feeling to people, but it certainly does cross my mind at times that there are not-so-legal routes to seek pain management. I’ll never really pursue that, but it’s hard to avoid the thoughts when the pain gets unbearable and none of my doctors will do anything for me. I have nothing to take; I just have to ride it out every time my pain gets bad.”
  16. “How some of the side effects of the medications I take that used to make me nervous and uncomfortable have started to become more enjoyable. They make me feel like I can escape from myself.”
  17. “I feel frustrated every single day. Because the person I am now can’t even do 10 percent of the things I could do before I was sick. I’m constantly irritated and grouchy due to frustration.”
  18. “That I ‘should’ be able to do more, and can’t. That I can’t sustain this level of fatigue for too much longer. That sometimes I hope I won’t wake up in the morning. This affects me greatly because I am 37 and just trying so hard to figure out how to have a better quality of life, so I can tolerate being here better.”

If you’re struggling with your mental health, you’re not alone. You can reach the Crisis Text Line by texting “START” to 741741. Our Mighty community also shared 39 reasons to keep living when chronic illness leaves you feeling hopeless, and Mighty contributor Jenna Oxenhandler shared her advice for anyone feeling guilty or like a burden because of their chronic illness.

Photo by Nicole Mason on Unsplash

Originally published: May 21, 2018
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