20 Things Doctors Need to Understand About the Complex Emotions of Chronic Illness

Living with chronic illness can provoke so many different emotions: grief, fear, anger, depression, anxiety, sadness, but also gratitude, hope, love and joy. We may oscillate between different moods, or feel a lot of conflicting emotions all at once. Illness is a complex and complicated creature, and as human beings, so are we. Any and all emotions we experience are a completely natural and valid response to a lifelong struggle with our health.

Unfortunately, the doctors in charge of treating our chronic conditions may not see the “full picture” of how our illness affects us. Appointments can often feel rushed and nerve-racking, and if you’re meeting with a doctor who specializes in one organ or bodily system, it can be easy to spend the majority of your time focusing on the symptoms they specialize in.

The problem occurs when doctors don’t recognize just how much of an impact chronic illness can have on our emotions and mental health (as well as just about every other aspect of our lives). This can lead to hurtful misconceptions, insensitive comments, misdiagnoses or even a lack of treatment. While doctors may not be able to truly understand what it’s like to live with a chronic illness unless they have firsthand experience, it’s still critical that we educate doctors about the emotional side effects so they can provide better, more compassionate care.

That’s why we asked our Mighty community to share what doctors need to understand about the complex emotions that accompany chronic illness. To all the medical professionals out there: We are so grateful for the work you do. We hope you continue listening to and learning from your patients and their experiences.

Here’s what our community shared with us:

1. “Negative test results don’t always feel like good news. Spending so much time/money/energy on doctor visits and tests yet still having no answers is extremely discouraging and depressing.” – Jadzia S.
2. “[Doctors] assume that the emotional pieces are an indication that the pain is psychological. For me, the emotional stuff is a result of the pain. I am sad because of the pain, not the other way around.” – Jordan C.
3. “[I’m] constantly told I’m depressed or anxious. I’m not either. I’m furious! I get brushed off by doctors and have zero quality of life. When I ask certain questions or ask for certain things I’m always told no. I always get told I’m too young to be sick or feel what I feel or that what I’m going through isn’t that bad. I firmly believe if I were an older male patient I wouldn’t have to fight as hard as I do to be heard and get adequate care. I get brushed off by doctors at visits and have but two who really understand the whole concept of my multiple illnesses and don’t jump to conclusions when new symptoms arise. I don’t go to ERs any longer because doctors just make assumptions or I don’t even get seen. I’m tired of being taken as a joke.” – Jae M.
4. “I don’t believe they understand any emotions associated with chronic illness. They never ask, are you feeling sad, anxious, etc. After all, it’s not a ‘symptom’ of your illness. To them it’s a job, everything is routine, they’re in the office and then gone off to the next patient.” – Danielle A.
5. “I have been afraid to tell a doctor any emotional responses I am having after my first year of illness. I was ignored and referred to psychologists insisting that my symptoms were psychosomatic. None of them wanted to acknowledge that I was anxious because they, the doctors, didn’t believe me. I thought I was losing my mind. I was depressed because my life was slipping away at such a young age. Now years later, though my life is vastly improved, my emotions around doctors are still cut off, I do not trust them.” – Robin S.
6. “I despise being labeled as having severe depression! I’m depressed because I’m in pain every day, and because of the pain I have no life! Take away everything that makes an active, outgoing, gregarious person happy, add mind-numbing pain and you get depression, anxiety, sleeplessness and _____. (Fill in the blank with any number of emotions and frustrations!).” – Linda M.S.
7. “They assume that my anger and frustration is just a ‘bad mood’ and not someone desperate for any help and any relief from this excruciating pain. Doc also doesn’t believe me when I say it’s severe, he thinks I’m just too emotional.” – Stephanie M.
8. “For me, it’s that no amount of antidepressant medication will end how frustrating it is to live with chronic disease and pain.” – Maggie M.
9. “Intimacy in marriages/partnerships should be given more consideration when talking about disease symptoms and medication side effects because lack of it can contribute to depression and stress which can lead to more disease activity creating a negative cycle.” – Sarah N.
10. “They don’t understand the effects of the loss of social life and isolation, which causes and/or exacerbates depression and anxiety. The stress involved plays a large role in our disease process.” – Bonita R.
11. “When they brush us off or don’t care to do the work to help us, it sends us deeper into depression. Our whole world revolves around what the doctors can do or prescribe for us, with the exception of small things we can do on our own (exercise if possible, afford acupuncture or massages, etc.), so when they show us that they could care less about our pain and symptoms, we lose hope. We lose hope that we’ll ever get better or be able to enjoy life. They need to understand that patients do take their own lives if they feel no one cares, can help and won’t and that they can’t handle the suffering anymore. They need to remember that we have every right to feel the way we do (depressed, angry, hopeless, frustrated, even suicidal) because our lives as we had dreamed of have been stolen from us and we cope with so much loss.” – Christine C.
12. “Not being able to process or articulate anything when I’m in the doctor’s office because of anxiety. Even if it’s written down, then I have trouble explaining symptoms, timelines, etc. I can tell my husband, but that’s it.” – Bethany A.R.
13. “They somehow think I am depressed and that is the main issue at hand. Yes, I think having CFS/ME, fibromyalgia and scoliosis along with something else no one can seem to figure out would make anyone depressed. But that is not my only problem. And it is not the only emotion I feel.” – Alexandria B.A.
14. “Doctors’, surgeons’ and specialists’ knowledge does not equate to chronic experience. Knowledge is power. Experience is life.” – Najee H.
15. “When I’m sitting in the ER for the 20th time and I’m laughing, it doesn’t mean I’m not in pain. I am trying to make the best of the worst situation and if I don’t laugh I’m going to scream.” – Jolene D.
16. “I don’t think doctors really understand the disappointment and the fear that patients have when a test comes back normal. Or the joy that something actually showed up in a test. You start to feel ‘crazy’ when you know you’re really sick but can’t prove it, so once they are finally able to give you answers it a major relief.” – Ashley C.
17. “I don’t think they truly understand the myriad of emotions involved in becoming disabled as a young person: the grief, the shame, the guilt, the isolation, the depression, the anxiety of finding doctors that understand, the exhaustion of being in pain, all tied up with the stress of the financial toll that being sick brings. Also, they don’t get that the emotional toll is because we’re sick. We’re not sick because we’re overly emotional.” – Amber B.
18. “They act like it’s black and white, that it’s simple: if I want to get better I’ll just try, and they imply that I’m not trying hard enough so obviously I don’t want to get better. What they don’t see is what goes on literally any time other than their office, and it’s incredibly invalidating and frustrating. We have to grieve the life we lost because sometimes nothing helps and we can’t get better.” – Alexandra E.
19. “You can seriously go from happy to sad to angry to distraught to hurt to numb to happy all in a matter of minutes. It’s not that you’re ‘faking’ or that you’re ‘crazy,’ it’s that you’re dealing with so much, your mind is trying to sort out the emotions that come along with it on top of everything else.” – Lizzie R.G.
20. “Even though I’m depressed, I’m not going to stop fighting for happiness and my own best health.” – Amber O.

For tips and advice from our Mighty community, check out the following stories:

The Importance of Processing the Emotions Caused by Illness

5 Ways to Advocate for Yourself at the Doctor’s Office

It’s OK to Feel the Hard Emotions That Come With Chronic Illness

I’m a Doctor With Chronic Illness. Here are 12 Things I Wish People Knew.