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17 'Red Flags' That Might Mean Your Chronic Illness Is Affecting Your Mental Health

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When you have a chronic illness, you expect to feel the physical symptoms of your disease. But you may not anticipate the effect chronic illness can also have on your mental health. Having to trek out to the doctor’s office or hospital frequently, the uncertainty of your future, having to leave jobs or school in order to focus on your health and perhaps even losing touch with friends can all, understandably, lead to depression, anxiety and other mental health challenges.

What makes this even more difficult is that these mental health challenges can sneak up on you. Doctors may not tell you how common it is to experience depression and anxiety when you have a chronic illness, and you may not recognize the “signs” that your mental health is struggling. So we asked our chronic illness community to share a “red flag” that let them know their chronic illness had lead to mental health challenges. Perhaps you’ll relate to their stories.

If you’re struggling, please know you’re not alone, and it’s OK to reach out for help.

Here’s what our community shared with us:

  1. “Suddenly I stopped taking all of my medication, including antibiotics. I just ‘didn’t care’ anymore. I was so used to pain that being touched in a positive way brought me to tears. Visiting a hospital terrified me, and I no longer cared about my condition. I started to see that I was [experiencing] depression and had acquired PTSD from events taken place at hospitals during a recent surgery. It was obvious that not being able to be independent — bathe, walk, cook, clean, work and so on — was taking its toll on me mentally, causing me to further rely on others to keep well.” — Kaylynn C.
  2. “Last year I was in the middle of a flare, living in my in-laws’ basement in a financial mess and I was just done, over it. I looked into my husband’s eyes for the first time in our entire relationship and marriage and told him I couldn’t do this anymore, I didn’t want to go on living like this. The look on his face was mind numbing and heartbreaking… Another year has passed that I didn’t think I would make it through but I have and I did. My next surgery is in a week and I have come to terms that it won’t be my last… and finally…finally it is OK.” — Stefanie K.
  3. “When I’m sick enough to need an ER visit for fluids because I’ve been unable to force myself to take care of myself due to anxiety of chronic stomach problems.” — Mikki G.
  4. “I noticed when I started shutting down. I shut out people and isolate. Having a sun/heat sensitivity caused me to be afraid of going outside and being social with the risk of a massive flare of SLE. It caused a kind of [anxiety] that made me scared that if I stepped outside in the sun I would explode like a vampire. I have found other ways to enjoy the outdoors safely with protection, but the fear is always in the back of my mind.” — Marissa P.
  5. Not wanting to leave the house and screaming at anyone who tries to get me to go out.” — Mia H.
  6. “Thoughts that something carrying me off without any guilt would be fine. Not suicidal — been through that in another context — just thinking that it would be nice to have a reason not to have to put up with the pain any more.” — Gabbie J.
  7. “When I first got sick I was in so much pain I’d just try to sleep it off to no avail. I’d ‘sleep’ 18 plus hours a day. Then I started just not caring if I got out of bed at all. I’d go a week or more without even thinking about showering. I’d forget to eat. Would mix my days up and ended up failing all my classes. It drove me into a deep depression.” — Jolene D.
  8. “Getting anxious while driving to appointments to the point I would be crying in the car and having panic attacks. Locking myself in the bathroom to cry because this has been so scary and the uncertain. It has left me feeling so alone and like no one understands. I try to keep a positive attitude, but it is definitely becoming a struggle as time goes on and I get worse.” — Brittany N.
  9. “Angry outbursts. Just rage that would take over and I would just have to get out. Since being treated for Lyme disease, although not clear yet… no more rage — ever! It’s amazing to feel like I’ve regained at least that much control back.” — Katherine M.
  10. “I knew something wasn’t right when I was sitting in the middle of a farmer’s field in the pouring rain as I felt a burden and didn’t know what to do with myself.” — Jade W.
  11. “Crying at the drop of the hat and over seemingly nothing… My hair also started falling out; I was later diagnosed with alopecia areata and lost 75 percent of my hair, which made my anxiety worse and I avoided seeing people or going out, snapping at people for not trying to be understanding, very angry because, as if Crohn’s disease and Meckle’s diverticulum wasn’t bad enough. I’ve now embraced my alopecia as my hair doesn’t define me as a person.” — Kerry S.
  12. “When everyone around me told me to go to the ER and I waited for days trying to resist the pain and then finally went and had to have emergency surgery the next day because I waited. Hidradenitis suppurativa has caused me to fear going to the ER because I don’t want to have to stay for a week at a time.” — KC S.
  13. “As I grieve the loss of my ability to work in my career field, I find that I dream about my old workplaces. My heart hurts even in my dreams as I slowly to let go of my former life. The depression, grief and self-doubt is real.” — Rachel A.
  14. “I used to be afraid of dying, but when my pain started to get bad, I wasn’t afraid of dying anymore, I was just afraid of living the rest of my life in pain.” — Sarah B.
  15. “Looking forward to meeting my husband and a friend for dinner after he had been at work and I had been at home all day. Waiting for him to call so I know when to leave, and as soon as he calls, yelling at him for not calling me sooner and having a huge meltdown. In reality, a short walk had triggered a migraine that morning and I was trying to not take an abortive all afternoon. I was so happy that I could finally walk that I didn’t want to have to take a drug. And a million more scenarios just like this.” — Korinda W.
  16. “Severe anxiety before seeing a new doctor, anxiety first thing in the morning when I wake up, isolating myself and wishing I hadn’t woken up each morning to deal with everything all over again.” — Christine M.
  17. “When all I want to do is shut down, and be stuck in my head. When I felt like nothing was ever going to get better for me.” — Misty A.

If you’re struggling with your mental health, you’re not alone. You can reach the Crisis Text Line by texting “START” to 741741. Mighty contributor Amy Rheaume also shared her advice for coping with chronic illness and depression, and our Mighty community shared the “small” but significant lifestyle changes that help them deal with anxiety.

Originally published: May 19, 2018
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