The Part of Chronic Illness We Don't Talk About Openly (But Should)

It’s the side of being chronically ill your doctor may not tell you about when you’re diagnosed. It’s a side that’s often hidden, even though its effects can be debilitating. And other people may not truly understand the toll it takes on you, unless they’re living with chronic health conditions themselves. It’s the negative effect chronic illness can have on your mental health — an issue you’re not alone in dealing with if you’ve felt its devastating effects.

Chronic illness can have a range of effects on mental health — from your mood and feelings of frustration, anger and sadness, to conditions like anxiety and depression that, for some, can lead to suicide. It’s important to recognize the variety of ways chronic illness can manifest itself in your mental health, so it becomes easier to talk about and reach out for help if you need it. So we asked our Mighty community with chronic illness to share how their condition affects their mental health. This is a part of chronic illness that needs to be recognized and supported without shame or judgment.

Here’s what our community told us:

1. “Being chronically ill can take a huge toll on your mental health without you even realizing it at first. It can cause anxiety for even the simplest things like having to see a relative. It can cause depression because you feel like nothing is getting better and you’re asking “Why me? what have I done to deserve this?” It can range from good mental health days to absolutely horrendous mental health days that leave you feeling hollow and dead.”

2. “Being sick is stressful. I’m constantly anxious I’ll get worse and pessimistic due to being disappointed by my health worsening.”

3. “I’ve developed severe anxiety as a result of my illness. Leaving the house is terrifying, and that doesn’t help the horrible isolation from not being able to socialize anymore. Even though it’s not my fault I feel so guilty always letting people down, which leaves me sad and often angry at myself.”

4. “Being added and removed one month to another from the UNOS waiting list for a kidney and transplant centers is hugely taxing. I try to remind myself just how strong I can be, remembering I got over this almost same hurdle last month. It is draining being your own advocate, but if you don’t fight for yourself there isn’t anyone else who is going to do it for you!”

5. “The longer you deal with it, the worse the depression and anxiety can get. You start to lose hope and don’t see the point in fighting. However, if you are lucky like myself, who has a great family to support, you have others in your corner urging you to fight for your mental health.”

6. “When your body suddenly decides to change its rules about sickness and health, it is hard not to be scared and lose trust. Chronic illness changes the rules and leaves it up to you to re-invent your life and personality. That’s a harsh truth to deal with.”

7. “Having a chronic illness and it taking a toll on your mental health is like watching your life through a window — watching everything you could be doing like playing with your kids, being with your husband — but you’re in such a state of depression and pain that it hurts to even get up.”

8. “There’s the grief, depression, anger, loneliness, that inner struggle of constantly fighting or negotiating with myself and my body just not wanting to cooperate.”

9. “My mental and physical health is like a big bowl of spaghetti — it’s hard to know where one ends and the other begins. I’m exhausted and hurting both mentally and physically.”

10. “Having a chronic illness affects my mental health by constantly doubting myself, doubting that I’m actually sick. ‘Am I making this up? How can I have all these problems? This can’t be real.’ Constantly doubting myself. It makes things so much harder living with this illness that will never go away.”

11. “You can’t understand how demoralizing it is to be unable to get out of bed in the morning because of your illness until you’ve been through it.”

12. “My days can range from mentally tired to extreme depression or anywhere in between. Having a painful chronic illness changes a person. People find deep strength when dealing with illness but the weaknesses are always closer to the surface.”

13. “I have chronic pain issues along with fibromyalgia. It does affect my mental health because when I’m in extreme pain, my mental state isn’t good. I’m moody and feel like I am the world’s worse person. My pain makes my self-esteem low, and that affects my mental health big time. It all works together, body and mind. So if one isn’t well the other won’t be either.”

14. “Chronic illness is so much more then just physical pain; the mental pain is sometimes worse. It causes so much depression and anxiety in everyday life.”

15. “I have post-traumatic stress disorder (PTSD) from so many different things happening to my body over the years and all the traumatic experiences. I am constantly on edge wondering what will happen to me next. It is hard.”

16. “It’s a vicious circle. When my pain is to a point I can’t fake happy, I get depressed, feel worthless, like a burden, can’t care for myself… then I hurt worse!”

17. “Chronic illness can be devastating to your mental health. It pushed me into getting my mental health under control. I continue to strengthen it and watch for signs of relapse. This is essential for dealing with chronic illness. If my mental state was any less than it is right now, I would not be able to deal with my illness. It would be dangerously unhealthy. I always tell others to work on their mental health first and foremost.If you can get that in check, other aspects of the illness can begin to fall into place.”

18. “Having a chronic illness makes your mental state shaky at best. You feel every emotion, every day. Pain, hurt, anger, triumph, success — they all hinge on your ability to keep it together. But that’s the irony of chronic illness. You spend so much time faking it for the world, that you crumble inside, in silence, alone.”

19. “In a society that over-values productivity and achievement and reviles anything that might be labeled weakness or laziness, the natural restrictions of chronic illness are not honored or understood. This can cause pointless suffering, as well as deep wounds in one’s self-worth and capacity to find meaning in life. I have struggled with these issues, in addition to my symptoms, for decades.”

Thinkstock photo by Everste