21 Things I Was Unprepared for When I Was Diagnosed With a Chronic Illness

So much about life with chronic illness is impossible to understand until you have one yourself. In a world where illnesses are typically expected to have an “end date,” few are fully prepared for the the challenges that lie ahead when diagnosed with a condition that won’t “go away.” Chronic illness can affect not only physical but also social and emotional aspects of your life, and doctors may not tell you about these side effects when you’re diagnosed.

To find out the unexpected ways chronic illness can affect your life, we asked our Mighty community to share what they were unprepared for when they were first diagnosed. By talking about these challenges openly, hopefully others can feel less blindsided by their own diagnosis — and everyone can feel less alone as they navigate their health.

Here’s what our community told us:

1. “A diagnosis doesn’t equal a cure. I thought that once my doctor had figured out what I had, we would create a treatment plan together and I would be able to move on with my life. Instead, my diagnosis has just continued to cause more pain and more unanswerable questions.”

2. “I couldn’t work in my field anymore. It took me 25 years to find a career I absolutely love and am actually good at. And I worked so hard doing my diploma, harder than I’ve ever worked at anything in my life. And got high distinctions on every assessment bar one. Having to accept I can’t physically do that job anymore has been absolutely devastating.”

3. “You spend a lifetime getting to know yourself… then… boom! You have to start all over and fast-track getting to know a whole new person… while at the same time you mourn the loss of the person you were before.”

4. “I was totally unprepared for the isolation and loneliness my illness would bring me. I finally had an answer for what was wrong with me, but I had no idea how alone I was in it!”

5. “I was seriously unprepared for the mental effects. Dealing with the resulting depression and anxiety was just as [devastating] as my chronic illness.”

6.I was really unprepared for the amount of time I would spend in the bathroom, how long it would take to shower, having to plan things far in advance to maximize spoons.”

7. “I was not prepared for the few people who were in my life who showed me kindness, who sat with me, who rushed me to the hospital, who cleaned my house, or brought food. I was not prepared for my husband to marry me sick and believe in me no matter what. I was not prepared for the strength I had within myself or the journey this illness would set me on.”

8. “This wasn’t just a ‘phase’ and not something I was going to ‘snap out of’ or ‘wake up and feel better from.’ I had to learn how to mange it and accept when I had done too much and stop. Stopping isn’t a sign of weakness; it’s accepting my bodies limitations and working within them.”

9. “I was unprepared for the new symptoms that came along. Once I got to the point of accepting one thing, a new one would show up and I would have to repeat the process of acceptance all over again. I was unprepared that I would have to wait, and am still waiting, for a complete diagnosis while I fight this every day without treatment.”

10. “When I was first diagnosed with Ehlers-Danlos syndrome, I had no idea how much was involved with it or those things that ‘clicked’ a few years later when it really started to flare up. I was told it only affects the joints, but as time went on and I did my research, I learned it affects much more than just your joints.”

11.I was unprepared to fight with the medical and insurance system for my health. I thought once I had a name for my condition, I would be able to get the care I needed. Unfortunately diagnosis does not guarantee access to treatment. This goes beyond dealing with ignorant or less-than-compassionate doctors. Many of us are forced to move or travel long distances to get the care we need, and insurance often refuses to cover it without a fight.”

12. “I wasn’t prepared for the guilt I’d feel when my illness required me to stay home from work or school, or when I couldn’t hang out with friends, or basically anything my illness prevented me from doing. People aren’t always understanding, and it’s not like I want to be ill.”

13. “The overwhelming and conflicting amount of information online, from doctors, and by friends on various so-called ‘natural cures,’ Western medications, or all the possible causes of my illness. I had no idea how to sift through what was valid, true, useful or harmful.”

14. “[I didn’t know] I would end up asking for help for simple things. I’ve had to ask for help getting out of bed, out of a chair, getting dressed, walking to the bathroom and even needing someone to feed me because I was too sore to hold a fork.”

15. “I felt relieved. I wondered for so long if something was wrong with me. I just never had the same energy people my age around me had. My periods were so severe, yet my friends would complain about having hard periods but would go out all the time and act natural meanwhile I felt incapacitated… I had all these doubts regarding myself that where answered with a diagnosis. It made me stop feeling so guilty and finally understand myself a bit more.”

16. “I wasn’t prepared for the loss of contact with friends. I would make plans and either have to cancel or in some cases, sleep right through them. People just stopped asking and eventually cut off contact.”

17. “I was unprepared to exist in a wait-and-see-world. My disease has not progressed as quickly as others’ have, which I am thankful for. However, we know I will get worse, we just don’t know when. Will it be in five years, next year, tomorrow? No one knows, and it is scary not knowing when your life is going to turn upside down…”

18. “I wasn’t prepared for watching others do what I used to do without any effort and wishing I could still do it. Everything takes 100 percent more effort, even simple tasks I took for granted.”

19. “I was not prepared for the amount of pain and how that pain would factor into every aspect of my life. Not one single part of my life has not been affected.”

20. “I have to take so many medications. Overnight I had to take six tablets a day, which only increased over time.”

21. “I was unprepared, despite finally having a definitive diagnosis, for other ignorant doctors to tell me I was still lying, making it up for attention, not sick, and just stressed and depressed. That was not something I had expected.”

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