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28 Unexpected Emotional Symptoms of Chronic Illness

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When you are diagnosed with a chronic illness, the doctor might give you an overview of the common symptoms associated with your illness, but often these are physical manifestations – pain, fatigue, swelling, even brain fog. Many of us are then surprised by all of the emotional side effects that accompany our illness. For me, the many years I spent being very ill but undiagnosed triggered the onset of depression and anxiety. I felt alone, scared, and judged by my friends at school who didn’t understand why I sat out during P.E. every day.

Even though many of us experience a significant change in our mental and emotional state after developing a chronic illness, we’re not always given the same run-down of potential emotional side effects as we are physical ones. Doctors may prescribe various medications to treat bodily symptoms, but what about our thoughts, our feelings, our relationships, our identities? In order to get a better understanding of how chronic illness can affect a person as a whole, we asked our community to share the emotional symptoms or side effects of illness that surprised them.

Here’s what the community told us:

1. “The guilt. I feel guilty for being sick. I have no control over it, it’s not my fault, and yet it crushes me. My illness affects everyone around me.”

2. “The constant merry-go-round of feelings, going between acceptance, depression and anger. Accepting there will be always days when you just wake up sad or angry about it all.”

3. “Grief. You feel an immense sense of loss for your old self and all your previous capabilities. It feels like you have had your life robbed from you, so you essentially go into a state of mourning.”

4. “Grumpiness! I used to pride myself on emotional awareness and self-control, but lately I find myself irritable and snappy. It happens when I’m in a lot of pain or discomfort, and when I’m having sensory sensitivity issues. I’m learning to see it coming before I snap at someone I love.”

5. “Shock. Everything happened so fast that I didn’t have much time to process what was happening to me. I came to terms with my mortality.”

6. “I developed PTSD from medical trauma. It surprised me because I didn’t realize I could get PTSD from what I went through, but I was diagnosed with it after years of going through so much medically.”

7. “I had relentless, overwhelming despair for over two years as a physiological side effect of my chronic pain/illness. I felt it in my entire body. I had no idea I could feel that way.”

8. “I never expected the level of empathy I now feel. The me before took for granted what health is, but now I know better and I am able to relate so much better to my peers.”

9. “Ableism and the lack of accessibility and support from society as well as the fact that society values achievement and productivity so much can lead to feeling worthless.”

10. “The constant use of humor or sarcasm to get through the day. If I point out that I messed up my words, got lost somewhere or forgot where I was going, it’s so much easier to laugh at myself than show how silly it makes me feel or how scared I get. I’m always ‘on’ and ready to joke, even though I’m exhausted from faking my way through 75 percent of the day.”

11. “When I was first put on the diet I am on now, which is low-starch and low-sugar, it surprised me that I felt the need to grieve for the food I couldn’t eat. I still get upset about not being able to eat a lot of food, even little things like toast. Sometimes it’s all I can do not to cry because I miss food so much.”

12. “The intense feeling of isolation. The people closest to me didn’t understand what I was going through, and after a while didn’t care because I was ‘always sick.’ So I stopped talking about my illness, about my feelings. The time I needed support the most, I found myself almost completely alone. That was a very difficult emotional blow.”

13. “Shame. I know I shouldn’t feel ashamed about my illness, but sometimes I do feel shame about my illness causing me to miss out on events with my friends.”

14. “For me, it was feeling numb towards everything. When I realized I won’t have my ‘old life’ back, I went completely numb to everything for a while — no emotion whatsoever.”

15. “Dissociation. I often don’t acknowledge my body as mine. When describing issues I say “the body” or “the stomach.” I personify them sometimes too. It’s a way of coping that makes it feel like the issue is not mine to own. I have started to accept and use possessive phrases, but off-hand I still dissociate from my issues.”

16. “The constant, unrelenting feeling of fatigue. It’s gotten worse over the years since being sick… Everything takes so much out of me… Some days I get a boost of energy out of nowhere. On those days I try my best to do everything I need to do and I rush through them, hoping my body will last through it long enough to get tasks done before I lose all my strength again. Still, it never gets easier trying to find peace with it all.”

17. “Anxiety. Anxiety over when my next episode is going to hit. Anxiety over dealing with welfare and trying to get them to understand my conditions. Anxiety over going down the street or being on my own for more than an hour. What if I have an episode and collapse? What if my heart finally gives out because of the stress being in this much pain has put on me? The anxiety of going somewhere and not knowing if they’ll have food I can eat or the right type of chair for me to sit on that won’t bring on an attack of pain.”

18. “Helplessness. I have all these ideas and tasks I want to accomplish and my body just won’t let me do all the things I want and need to do.”

19. “The development of an eating disorder (not so uncommon, but there was no information, advocates or professionals who put the warning of the link out there).”

20. “Denial. I was diagnosed at 14 and really didn’t understand what juvenile rheumatoid arthritis was. I thought if I ignored it, it wouldn’t be real. I just wanted to be ‘normal’ like all the other teenage girls at school. Obviously that plan didn’t work but it wasn’t until my junior year of college that I really participated in my treatment and started advocating for myself and others.”

21. “Anger. I didn’t know I could hold so much anger within myself. At myself. At people who don’t understand. At pharmaceutical and insurance companies. People I don’t know. Anger toward people who take their health for granted. Anger every time someone complains about being sick when they have nothing more than a cold. Anger that I will never be who I once was. Anger that there aren’t usually answers for people with chronic illness. Anger that I am starting to forget what life was like when I wasn’t sick. Anger that I miss out on so much and when I don’t miss out I can’t soak anything in or remember it because I have to fight my way through everything. Anger that it is so unfair, and there’s nothing I can do about it.”

22. “Feeling sorry for myself. You work through your illness for so long. You put on the brave face day in and day out. Maintain a composure of control and strength. It’s no wonder no one understands how you can be sick. It feels like weakness to feel bad for yourself but this is your life now. This is who you are.”

23. “Self-doubt. My whole life I have been treated as if I am lazy when I have always given 110 percent.”

24. “Bitterness and jealousy of healthy people who have never had to experience the same problems or who get to enjoy things I never will again. You don’t realize how much you take for granted every day until those things are slowly taken from you.”

25. “Fear. I am afraid of what my future may hold. I don’t want to live the rest of my life in pain, trying to ration out pain medication. I fear for my children and grandchildren that I may have passed down ‘faulty’ genes to them and that someday they may get sick like me. I fear I will become too much of a burden on my loved ones one day. I fear so many things.”

26. “Denial gets me every time. In my head I’m still healthy and active, until I try to be healthy and active. It doesn’t matter how long I go through this same circular pattern…it’s always I think I can, I think I can, then #fail.”

27. “The constant panic really blindsided me. ‘Is this pain in my arm going to be something else that needs treatment?’ ‘Can I get through the whole party?’ ‘Can I eat anything there?’ ‘Will I even have energy left to go out on the street after getting ready?’”

28. “My capacity for compassion has grown immensely. It’s hard to judge another person when you know how much can be hidden behind the facade.”

Originally published: May 19, 2017
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