Six things I didn’t know, six years ago this week, about chronic illness

A teensy little back story first. This week, six years ago, I got sick. I thought I had the flu, turns out it was Myalgic Encephalomyelitis / Chronic Fatigue Syndrome. I’ve learned countless lessons, some good, and some I truly wish I’d never known. Since I’ve been down in the chronic illness trenches for a while now,  I thought I’d just share six of the things I’ve learned because I’m wiped out and six seems fitting, since it’s been six years. Let me warn you, and reiterate, I’m wiped out so the below is kind of a just tell like it is, vs. edited and potentially non-offensive. Here are some things I didn’t know:

  1. I didn’t know there were illnesses that research was so grossly underfunded that doctors (so many doctors, actually most of the doctors) still hadn’t heard of them or been properly trained on how to care for their patients, despite millions of people having the illnesses.
  2. I didn’t know a chronically ill person could be repeatedly denied disability insurance even after numerous board-certified doctors explained that working would not be possible for said person. Side note, I also didn’t know that disability insurance would reference said doctors as dishonest or would refer to the patient as manipulating the doctor into believing the illness was severe, but they do.
  3. I didn’t know there was an illness that would drain the energy from your body to the point where you honestly don’t know if you’ll survive the night. Side note, I also didn’t know that with that illness you don’t go to the ER, no matter how off your heart rhythms are, because ER will do nothing more for you than make your condition worse, and send you on your way.
  4. I didn’t know that grieving your life of chronic illness, while still trying to have each day be as best as possible, is one of the hardest things you’ll ever do. No seriously, hardest ever.
  5. I didn’t know who would stay and who would fade away, and I can assure you if you’d ask, I would have gotten it mostly wrong. Seriously is it so hard to send a text once in a…I don’t know, ever?
  6. And finally, I didn’t know six years ago that today I’d be spending day 2,190 in bed writing a blog post (because I’m a blogger now, wouldn’t have seen that one coming either), filled with a few of the life altering realities of having a chronic illness that’s not well understood. However I also had no idea that at the end of the post I’d include my new favorite hobby of watercolor doodles (wait…what?! I doodle and watercolor now!? I mean who has the time for that!?…oh right, me).

Thank you for stopping in. I’ve hit a rough patch this week so most of the doodles I’m posting below I’ve posted previously. Hoping you’re able to stay safe and healthy wherever you are in the world. Take the best care.🌺

9 thoughts on “Six things I didn’t know, six years ago this week, about chronic illness

  1. Mer O'Leary

    If you ever want to chat, if you’re feeling up to it, of course, I’m on Facebook. ❤️
    Also, it’s been 8 years for me now. My worsening fibro and it’s coexisting friends, plus my mental illnesses have wrecked my life as I knew it. Blogging has saved my sanity over and over.
    And I also lost so many people…but they never had my back to begin with.

    Liked by 1 person

    1. Thank you 💖 I’m so sorry you’re in this leaking boat too. I mean that though I’m not just saying the words. I think when you experience chronic illness first hand it becomes very real, (and you have the ability to empathize) it’s heartbreaking to watch others go through similar experiences. This isn’t what any of us dreamed about as children. It’s messy and difficult and negative and we all use sarcasm and dry humor to survive but some days whew it sucks the jelly right out of the donut. I try to stay borderline positive but some days like days when I realize my 40s will be gone next week and this illness stole most of them, those days I’m just overwhelmed with grief. And I know you know the grief. Sending you the biggest hugs 💞

      Like

  2. What a bittersweet anniversary, Mishka. You’ve made some excellent points that I nodded along too, especially this one : “I didn’t know that grieving your life of chronic illness, while still trying to have each day be as best as possible, is one of the hardest things you’ll ever do.” < So, so hard. It's a rough road to walk with chronic illness, but you're not alone, we're not alone. You have a tribute here. It may not be the life we ever thought we'd have, but we can only do our best to keep our heads above water and make the most of what we can. I never knew I could reach such deep, dark depths before this, nor experience the pervasive guilt like I do. It's a learning curve that sometimes I don't have the energy to keep riding. But keep riding we do. Sending lots of love your way xxxxxx

    Liked by 1 person

    1. I’m just seeing this now. 😐 It’s been a bumpy week health wise. Thank you for your support and compassion. 🌸 Your words are always so thoughtful and eloquently written . This life isn’t one people could begin to understand unless they walked it. That’s one of the hardest parts. Hoping you’re as well as possible and your symptoms leave you completely alone today! 💖

      Liked by 1 person

  3. First, you so hit the nail on the head with your six observations. Although I don’t have your specific illness I have an illness that most doctor’s no nothing about or even believer is a true illness. It took them 9 years to diagnose me and I have been snowballing into hell over the last 5+/- years I can’t even remember when I had a slight lessening of my pain etc. I have been trying to deal with thing now going on 24years. I can barely remember when I used to just do anything I wanted and enjoy it.

    It took 6ish years to get approved for disability. I am so tired of the whole situation I can’t even make myself tell you what a joke so many denials were based on despite all of my immense collection of medical records.

    Every minute “advanced medicine” make no advances on my illness the less hope I have of ever having a normal life. So very tired of my Italy of doctor appointments.

    Good luck and beautiful art.

    Liked by 1 person

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