What We Wish We Knew Before We Got Sick

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I wish I knew that I would lose so many friends when I got sick.

Chronic illness changes your life completely and I want to raise awareness for how it impacts people’s lives. Anyone is at risk of developing a chronic illness, so if I can make them aware of how much it could affect them, I want to do that.

Everyone has a different experience with chronic illness and I want to cover every possible angle, so I recently tweeted a question:

What do you wish you knew before you got sick?

This was also posted on Instagram and Facebook to see what my fellow spoonies on there thought.

I got so many replies! I honestly didn’t expect to get as many as I did. It just goes to show how difficult and different life is when you have a chronic illness (or many)!

Responses from Twitter

Responses from Instagram

  • How expensive it is! 😅
  • How exhausting it is just to function.
  • I wish I’d know food for me was going to turn into a task and enemy sometimes so I could appreciate how tasty and easy it is to eat then 😊
  • I wish I knew to trust myself, listen to my body, and follow my intuition instead of placing it all on the backburner in the presence of “authority” aka docs whom never knew nor understood what I was going through!
  • That finding a decent doctor is hard altho it should be common sense 🤦🏻‍♀️
  • The loss of friends as soon as I got ill. I haven’t heard a thing off them. The other thing would be my mobility, my freedom. I have 2 sons and I just wish I could walk to the park or so something without being in pain or sleeping. I can sleep 18 hours a day on my worst days. It’s one hell of a shock. I didn’t get fibro from an injury either. Mine was emotional after some losses. Something awful as grief means some days I can’t walk down stairs, it’s hard xx
  • I wish I knew that so many people didn’t know my condition existed, and that so many people would pretend I was faking it.
  • I wish I knew how fragile our lives are. How fast things change. How one day you are fighting for your life and how one day you can feel fine.
  • I wish I knew how strong I was to fight this battle 💪🏻🌻
  • Once you tell someone you have a disease or many they assume they’re gonna catch it
  • That I would have people call me a liar 😒
  • I was taking my health and my life for granted
  • How different everyday life would be
  • How much time it takes to get test results or schedule doctor appointments.
  • I wish I owned an online biz sooner instead of wasting health in college! No one needs a 9-5 job to be successful, especially chronically ill people. Especially if you’re diagnosed young, don’t feel pressure to get a degree if it’s not healthy.
  • That I had taken so much for granted
  • That I would feel more alone than I had ever felt in my life
  • That not all doctors deserve as much respect as they’re given
  • Illness would change my identity and I would think that I am only sick not anything else
  • I personally think the grief you experience is what I wish I’d known, going to talk about it in my next post so thank you for the thought-provoking question! 😊
  • I wish I had known how quickly one medical issue can cause multiple more, or that for the longest time I thought most of my problems were normal because I was told I was being “overdramatic”.

Responses from Facebook

  • I wish I knew that my siblings would turn on me
  • Same. Friends (in teenage years) didn’t understand.
  • I wish I knew that friends I thought loved me would turn away…
  • I wish I knew to get disability and life insurance!!
  • I wish I knew I would gain so many amazing friends who changed my life that I never would have met
  • I wish I knew the answers to disease management that I know now
  • Wish I knew I could say no. I have started saying no often now. I say no to procedures, medications or tests. I thought that no matter how bad something hurt I could not say stop. Now I know better and get in trouble more often and it is wonderful!
  • I wish I had known I would lose the job I loved.
  • Doctors don’t know everything and the best ones are the ones who will be honest when they don’t
  • I wish I knew the seriousness of my illness I would have looked after myself more was just given a diagnosis and sent on my way x
  • I wish I knew that it is ok to be “selfish”, to put myself first and to say “no” on those rough days

Responses from emails

  • What I wish I knew before I got sick. My first chronic illness was mental illness… I wish I had known then what my life would be now. Back then, I had a lot of suicidal ideation and maybe if I could have foreseen that my mental illness would eventually be stable and managed and that my life would be better, well, maybe I would have had a bit more hope to make it easier.
  • What I wish I knew before I got sick with autoimmune diseases was that my unhealthy habits then would contribute to my chronic physical illness and struggle now. In the news, there is a lot about genetic testing. I kind of wish I had been able to have testing and see what illnesses I was prone to so I could have been more motivated to prevent them.
  • I wish I knew then that I have a voice and I want to use it to help others. I am now feeling brave enough to put myself out there. Okay, not on a podium giving a speech to a crowd, but from behind my computer screen. I want to make a difference.

Are you chronically ill too?

If you’re chronically ill and there’s something you wish you knew, please feel free to put it to the comments so I can add it to this post!

If you loved this post (and I’m SURE you did, considering you’re reading this), you NEED to check out my eBook 10 Things You Need to Know About Living with Chronic Illness!


This is a pin for you to share on Pinterest. It reads "What We Wish We Knew Before We Got Sick".

2 Replies to “What We Wish We Knew Before We Got Sick”

  1. I just wish I’d know 20 years ago what was causing all my symptoms… instead I’ve only had a diagnosis and real treatment for the last two years…Now I’m afraid it’s to late. Instead of one autoimmune disease I’m battling 4…

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