I remember waking up to a nurse cutting open my sweater as I lay on the hospital floor. They were yelling for the paddles to shock me, and as I started to come to, the first thought I had was, "Why are you ruining my brand new sweater?"
I was 25 and had just landed an incredible job as a social worker on one of the top oncology units in Chicago. I had a girlfriend, a social life, a plan. A minute earlier I'd been walking down the unit with some colleagues, joking around as we always did. Then, without any warning, everything went dark. One second I was laughing with them, and the next I was on the floor.
What I didn't know yet was that it would take five years to find out why, and how my life would change forever. It was also my crash course in how chronic illness and mental health tangle together.
Being that young and enjoying my social life as much as possible didn't really lend itself to moments of self-reflection about my health and how important it was. I'd been an athlete most of my life, so I figured I was set. I drank six Cherry Cokes a day (and still do), didn't worry about exercise, and thought binge watching Netflix for six hours on the weekend was accomplishing something. I had thought collapsing that day was a fluke, and I would just go back to my routine, but life had other plans. It led me to a brutal run of five years of appointments, tests, medications, and self-doubt.
What is life like without a diagnosis?
Those years cost me a lot. I lost my career. I lost relationships. I lost my independence and a good chunk of my self-worth. I moved back in with my parents and wasn't allowed to walk up the stairs alone. I rebelled and did things I wasn't supposed to do, against doctor's orders, because I wanted some sense of control over my life, even if it made me feel worse.
One of the lowest points I had experienced was losing my job on the oncology unit. That job, at 25 years old, was THE job I wanted, and suddenly I wasn't able to do it. Not because I lost interest or didn't perform well. Because I physically couldn't show up without the risk of collapsing again. Somewhere in that process I started to realize I might never become this world famous social worker who changed the world, the one I'd imagined back in graduate school.
The other low point was after two years of tests and trial-and-error medications, when I left a top hospital in the US still without an answer. I was genuinely excited to go get seen there, because, in my mind, they were going to fix everything and I would be able to get back to normal. After leaving there, back at square one, I was so tired of not knowing that I caught myself hoping for any diagnosis at all, even a bad one.
How does being physically sick affect your mental health?
The two aren't separate, even though we treat them that way. A World Mental Health Surveys study of more than 42,000 adults across 17 countries found that every chronic physical condition it looked at was linked to depression, anxiety, or both. In another multi-disease study, 31% of people with chronic illnesses had depression, compared with 11% of healthy controls.
It makes sense when you think about what an illness takes from you, like your routines, your independence, your plans, and sometimes your career. And when no one can tell you what's happening in your body, the not knowing becomes its own weight. It starts to make you wonder if it's all in your head. It can also make you believe it's never going to get better, and that for the rest of your life your name will be synonymous with "sick." That idea constantly left quite an impact on my mental health.
My condition is called POTS, or postural orthostatic tachycardia syndrome, a disorder of the autonomic nervous system, and it took years to name. That isn't unusual. In a survey of more than 700 POTS patients, the average wait for a diagnosis was almost six years. That's a long time to spend constantly worrying about why you feel the way you do. And this isn't only about POTS. Anyone living with a chronic illness and still waiting for answers knows that feeling, whatever the condition is.
It runs both ways, too. Low mood can make physical symptoms feel louder, and louder symptoms deepen the low mood. For me that loop was the whole story. The physical and the emotional were so tangled up that I couldn't tell which one was driving.
Why do we talk about the body but not the mind?
Short answer? Because the body gets sympathy. Being sick earned me understanding and concern. Being sad earned me judgment, or at least people telling me what to do to "feel better."
When I first got sick, friends would ask how I was feeling. I'd talk about my heart or how I fainted, and the sympathy that followed actually felt good. It made me feel like people cared. But so much of the time, I was feeling physically okay. It was my mental health that was deteriorating.
On the rare occasion I was brave enough to say that, it was usually met with discomfort. Not because people didn't care or want to help, but because most weren't prepared for that kind of answer, and mental health still carries such a stigma. So I kept talking about my heart instead.
I wasn't the only one. A review of the research found that depression in people with physical illness gets picked up less often than depression on its own, which suggests how easy it is to miss, or to hide. It gets harder still without a medical diagnosis. Some of the people around me seemed not to believe anything was wrong, because I couldn't give them a name for it, or at least that is how it felt. Feeling doubted on top of feeling sick is a heavy combination.
How does chronic illness affect the people who love you?
At first, I honestly didn't think about how my parents or close friends were impacted by my suddenly getting sick. I understand that part better now. The people around me were struggling too. My parents, my friends, and later the people closest to me all wanted the same thing, for me to be happy and healthy, and they couldn't make that happen. Feeling helpless is hard, so they tried to fix it, which is what most of us do.
They were also experiencing what's sometimes called caregiver trauma every time I fainted to the floor. Some of my family and closest friends still have a reaction to this day when they can't reach me. It isn't because anyone was being overbearing or neurotic. They saw me faint over and over, called 911, and sometimes couldn't reach me because I was in an emergency room. At the time, I was more worried about me. I was the one in the ambulance, but they were the ones left waiting and wondering. Looking back, I can see how traumatic and emotionally exhausting it was for the people trying to help me, then and now.
If you're the one standing next to someone who's sick, you're allowed to need support too. A 2023 study of family caregivers linked heavier caregiving burden to higher levels of anxiety and depression. It wasn't only my body on that floor. Illness touches everyone standing nearby. If that's you, please don't be afraid to reach out for support.
What actually helped?
Therapy, first. I wish I had gone right away instead of waiting. Talking to someone who didn't judge me let me say all the things I couldn't say to anyone else, and it changed how I moved through being sick. For me, it led to my physical symptoms lessening, and to me being more focused on how to heal, instead of allowing myself to remain in a perpetual state of feeling sorry for myself. I stopped feeling like my identity was being the "sick guy." Therapy helped me accept that this was my new reality, and that was okay.
The other moment that led to feeling better was when I finally received a diagnosis. It eventually led to a pacemaker, and for the first time in years I felt safe. I knew what was wrong, scientifically, which made me less anxious, which made me more aware of my body and what I needed to do to stay safe. Having a name for it also made it harder to deny that I had a health condition at all, something I'd avoided early on because I was so young and didn't want to believe it. I would walk into my pacemaker clinic, an average of 35 years younger than everyone else, and feel like Iron Man. I took the fear and embarrassment I had about being sick and turned it into something I was no longer ashamed to have. It stopped being my identity and became just a small part of it. I don't think I could have gotten there without the work I'd done on my mental health first.
What would I tell someone living with a chronic illness?
Reach out to someone. A friend, a family member, a counselor, whoever feels safe. Say how you actually feel, not just how your body feels. And if you're not sure what to say, you don't need the right words.
Find a counselor who understands that your health and your mood are connected. Give yourself permission to grieve what the illness took, even while you're fighting to get better. If you're managing a health condition far from home, all of this can feel even heavier, so don't wait.
If you're the one caring for someone who is sick, try saying "that sounds really hard" instead of "have you tried..." And the same goes for you. Reach out for support.
Being physically sick affects your mental health, and there is no shame in that. To heal, you have to focus on both.
If any of this sounds familiar, whether you're the one who's sick or the one caring for someone, book a free 15-minute consultation. You'll work directly with me, in English, and we can navigate how you're feeling together, judgment free. Sessions can be online, so you can meet from home on the days your body has other plans. And if exercise is part of your treatment plan, let's do a Walk & Talk and take care of the physical and the mental at the same time.
If things feel heavier than that, 113 is free and available 24/7 at 113 or 0800-0113, with an English chat on 113.nl. You'll also find more options on my Mental Health Resources page.
Sources
Chronic conditions and depression or anxiety: Depression-anxiety relationships with chronic physical conditions, World Mental Health Surveys
Depression among people with chronic illness: Frequency and predictors of depression and anxiety in chronic illnesses
Detection and the two-way relationship: Depression and chronic physical illness, review on PubMed Central
POTS diagnostic delay: Dysautonomia International, Physician Patient Interaction in POTS
Family caregivers: Psychological distress of family caregivers of people with chronic diseases, AIMS Public Health, 2023