Accepting That Doctors are Not Gods

This is going to sound harsh, and it is. It is one of many, many harsh lessons learned through dealing with a chronic illness. Learning not to fear new symptoms is a huge part of accepting chronic illness, and it isn’t fair, but that’s the way it is when your doctors dismiss everything that goes wrong, large and small, without so much as researching them first. I don’t catastrophize anymore about new symptoms, partly because I don’t have the energy and partly because it does not help, it doesn’t get me anywhere I want to be, and it sometimes can make a flare up spiral out of control. I’m scared of lots of stuff, but even having half of my face go numb for eleven days (like right now!), it just isn’t a big deal compared with the rest of my illnesses and the other weird, painful, and occasionally terrifying symptoms that crop up out of nowhere. I get crushing chest pains that go down my arm and feel exactly like I’m having a heart attack, complete with crazy blood pressure and all the blood flow to extremities and stomach shutting down and my lips and fingers turning blue.

Most people would have done differently, but the first time it happened, I was in too much pain to speak, it was like the wind completely got sucked out of my lungs. I didn’t even call my doctor, instead I asked my friends what was happening to me, and they knew immediately what it was and that I just had to wait it out. My chronic illness sisters were so compassionate and gave me tips to get through the attack based off of their experiences. I later learned there was nothing an emergency department could have done for me, and that my doctor actually didn’t care that I was having them on a pretty regular basis when I did tell her about them. She didn’t even put it in my chart notes. If I had gone in to the doctor that first time, it would have no doubt been a negative experience, and I need all the positivity I can gather when I am going through a scary or difficult symptom especially for the first time.

So at least in my unpredictable case with so much going on, actually expecting help from doctors is way more terrifying than having my face go numb and not being able to get out of bed because of severe spasms. Again.

That being said, I’m tired of being ill, and mostly of feeling so on my own when it comes to debilitating health issues. I want to go back in time three years ago and be a 20-something with a stressful but mostly happy living situation, and act like other 20-somethings and not be sick and stuck in my house all day every day. When I get injured, I want to still believe that doctors can fix it all. I don’t want to simultaneously have chronic fungal, bacterial, and viral infections that will not go away. I don’t want to look at my disgusting house and think, “hopefully my body lets me do the dishes at some point today” or “not even a possibility, don’t even look at it.” and then realizing that even if I fall over in the middle, I have to do them no matter what, because this is life and this is the rest of my life. I might sound stronger than I did a few years ago, but I feel the opposite. I feel fractured apart by chronic illness, even my thoughts are scattered and lack complexity and depth.

Part of what I want people who are newly diagnosed to know is that breaking down is okay. Being frightened is okay. All of your emotions are valid, and just because there is an emotional component to your pain and symptom flare ups, it does not mean you are to blame in any way for the failures of your body. You aren’t floundering because you’re weak, you’re floundering because being in chronic pain takes away some of your ability to think clearly, it shuts your brain down to an extent, and frequently, doctors lack the compassion to properly understand where you are coming from.

At first, chronic illness is overwhelming, it is losing friends and the ability to be independent. It is sadness, depression, anxiety, and feelings of being a burden and/or being judged lazy or crazy. In the beginning you don’t know when the losses will stop. Until one day you find yourself on the same emotional footing you were on yesterday, and then hopefully the next day as well, until maybe you have a day where you find yourself more “you”  and at peace than you have been in a long time. I’m not saying the pain goes away or you get used to it or you should just learn to tough it out or anything, just that there is not enough room in our previously busy lives for the kind of suffering that chronic illness heaps on us. Part of the challenge is making room for the pain and being respectful towards it. It is a part of life now, and if there is no room for it, the suffering it causes spreads across every part of your life.

The more I make room for the pain and general feelings of being unwell, the better I am able to cope with the other symptoms, the ones that scare me almost as much as going to the doctor one more time.

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About Jessi Finds Out Fibro

Hi, and thank you for finding your way to my corner of the web! I'm on a journey to empower myself and hopefully others through shared courage and compassion. I write Finding Out Fibro, a chronic illness and chronic pain awareness blog that is not just about fibromyalgia, as well as a new project making jewelry under the Etsy name Hopeful Spoon. Please check out the shop and share if you can! Thank you for your support! My other hobbies include defeating ableism anywhere I find it, upcycling old junk into funky awesomeness, raising my voice to erase stigma against invisible illness and mental illness, baking, collecting vintage kitchen ware, sharing body-positive messages, playing around in photoshop, abstract painting (especially in neons and metallics!), advocating for those living with chronic illnesses and mental health challenges, seeking safety and upholding visibility for LGBTQIA individuals living with physical and mental disabilities, researching and testing plant-based remedies for chronic pain, and spending all my spare spoons in my veggie garden. This is my opportunity to do more than just survive with chronic illness. This is me learning how to live well, even though there is no cure for the war my body is waging on me.

5 responses to “Accepting That Doctors are Not Gods”

  1. abodyofhope says :

    WOW! This is excellent! I am so sharing this!
    You have such powerful things to say. How long have you been blogging? Wonderful post!

    Liked by 1 person

    • Jessi Finds Out Fibro says :

      You made my morning! 😀 Thank you so very much! I have only been blogging for a few weeks. Before that, I wanted to, but was afraid to start, so I have about 30 posts saved up from the year past that I haven’t even gotten to editing and posting yet. Everything I have posted so far has been new writing, though. Having a blog is the most wonderful, empowering event this year, and I cannot stop writing. I wouldn’t even care if no one read it, but your kind words mean the world all the more because I wasn’t expecting positive feedback on this blog! Thank you, again. I hope you’re having a more spoon-filled day than usual, darling. I love your blog and how well your voice shines through it. I feel like I’m in the same room as you when I read a post.
      Love,
      Jessi

      Liked by 1 person

  2. abodyofhope says :

    What a lovely think to say. I really appreciate that more than you know as this is physical therapy for some brain damage I’ve experienced. You have made MY morning ❤ ❤
    I'm so happy you have decided to be brave and take the blogging plunge. You are made for this! I'm going to be sharing your words a lot 🙂
    You and I are alike in that we both have been tucking away posts and now we are flying our Spoonie flags for everyone to see. I'm so grateful we found one another!
    I hope you have a blessed day!

    Liked by 1 person

  3. waxingturtle says :

    Jessi,
    I have to agree, your posts are powerful and you say all the things we are going through but have trouble putting the words to them. I enjoy your images too. I’ve recently went through the doctor asking ME what I want to do… really? I came to them for help and they had nothing. 😦
    So, I’m going to a specialist who, hopefully, will have some more information and we can start to put the puzzle together.
    I nearly cried when I read the part about it’s not our fault that our bodies fail, and accepting the pain and limitations help cope. I’m working on it, really hard. But it never seems to get any better. But I think it’s because I haven’t come to deeply accept that this really is my life, it’s been 20 years, and I’ve continued to fight it. I think that caused more stress… I believe I will start a second blog soon in regards to the journey I am about to embark on with this latest issue.
    Thank you for this blog. keep it up!

    Like

    • Jessi Finds Out Fibro says :

      I would love to read that blog, please do start one!!! You will be so blown away by the positive support, I promise. This whole experience of blogging about my conditions in the moment, it has helped me find a place for the all the pain and fear and isolation and desperation. Now I have a direction to send it in and hope it organizes itself into something that isn’t utterly depressing to read!
      I only ever intend to write a paragraph or two and the posts turn into novels that take half the day because I’m like a badly trained dog on an off-leash walk. ADHD, go away, go away. I’m loving being a part of a supportive little community that has already opened doors for me I knew nothing about, I bet you will love it too! People like yourself have been nothing but lovely, and I’m so grateful to meet fellow travelers on this bumpy road. ❤ Fighting the hard battles alone is not fun, not easy, and your deserve admiration for all that you've gone through and been able to pull a life out of. I can't wait to read your blog dear! I want to know your secrets to survival too! Your strength comes through so clearly in writing.

      ps. Thank you for reading, hon! Sending you lots of spoons, and I'll be waiting for you to let me know about your new side blog! And positive vibes for the new specialist to be a good fit and give you some answers.

      Like

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