Chronic Lessons: Then and Now

When I first came down with an invisible illness shortly after being in a car struck by a semi-truck, things looked pretty bleak.

My thought process after six months of dealing with the constant doctor visits and physical therapy, with the pain, fatigue, and fevers, was that either me or my illness was gonna go. Both of us were not gonna share this body.

Fix it or kill me. That was my motto. I could not conceive of a world in which I could not work, but in which I still had value. Value despite a dollar amount I was bringing in. No part of me wanted to accept that I would have to learn to live with this, or that my life not only had to be paused, but also that I may never be able to participate in the same ways as before no matter what I tried to cure myself. We hadn’t even started talking about disease processes or autoimmune or anything at all other than injury from the car accident, but I was frustrated that I just kept getting worse the more work I did to heal.

On the days in between flare ups, before I knew what a flare up even was, I insisted to myself that I was cured, and I was horribly let down and unprepared for every single episode or new symptom that manifested.

When people told me it would be easier and better to approach my illness from a place of positivity, I was furious, because they were making the assumption that I wanted to live with pain in every part of my body, and I really did not, at least not at that point. I had just recently been perfectly healthy, my body and brain up to any challenge set in front of me. How could I adjust to being so drastically limited and in so much pain I couldn’t even drive or work a full shift? It truly seemed impossible.

It also felt like when people tried to encourage me to make peace with all the unknowns and all the debilitating symptoms they were implying that mind over matter would cure me, or at least allow me to live a ‘normal’ or fulfilling life. Again, a life without a job and my recently hard-won independence seemed so completely unfulfilling. I went straight into defensive language, outbursts, and isolation at the first suggestion that somehow I was expected to be strong enough to cope with physical weakness, fatigue, pain, sensitivities to sound, light, chemicals, smells, and touch, energy crashes, cognitive dysfunction, lack of ability to work or drive, and the accompanying guilt and grief that go with losing your place in life right after you gain autonomy over it for the first time. I could find so many more reasons to be upset than to be optimistic. It felt like everything I loved had been ripped away, like all my choices had been taken from me. Of course that isn’t true, but for newly diagnosed or undiagnosed pain patients, especially at a young age, it’s entirely common to feel like it is the end of your life and nothing good will ever be possible again unless it comes packaged as a complete and total cure. The temptation is to retreat and hope that you can pick back up again where you left off when you feel better, and that’s acceptable with temporary injuries and illnesses, but with chronic illness there are often no “feel better” days, and there is only so much hiding from life you can do before it becomes apparent that life is going to continue, albeit differently.

I still have moments where I think I can’t handle it, and weeks where everything spins around me and I hope hope hope I will still be okay when it all lands again. I still fear for my future, I fear for my relationships, and feel insecure about my lowered libido, frequent whining, fitness level, and inability to contribute financially. Those things are part of being human though, if I didn’t experience some guilt and upset over them, I wouldn’t be me.

Amazingly, I have learned a lot through illness. I have learned to be patient no matter how uncomfortable or unhappy I am. I have learned to take care of and prioritize myself even when it feels selfish and lazy. I have learned that internalized ableism is what makes me feel that way, and that ableism does not do me any good, especially not when it has become a part of my own thought process. I have learned the importance of asking for help, though I haven’t quite mastered actually asking for it. So much has sunk in; things that I was resistant to when fibromyalgia and chronic fatigue syndrome first reared their heads. I wonder if I am even the same person anymore, but not in a totally negative way.

I have learned above all that there is not as much wrong with me as there is with a society that teaches people to base worth off of income earned, sexual intensity, physical ability, and even intelligence. There is nothing wrong with having an excess of one or even all of those things. But there is nothing inherently better about possessing those things, either. Except that it certainly makes your way in life a lot easier to have money, health, sex appeal, and unlimited brainpower. Maybe that’s what I like more about myself now; it’s not that easy anymore, I can’t just draw on one of those things and call myself a better person for having it. I can’t reassure myself with meaningless attributes, and that is its own kind of blessing. I have to concern myself instead with things like courage, persistence, kindness, and even that elusive thing we call happiness. Amidst all the pain, being ill has given me something wonderful; it has allowed me to seek out those true, meaningful, beautiful traits in others, regardless of what value society has assigned to someone.

I’m actually surprised that the person I was ten years ago has grown up into a person who does not hate herself and who rarely wastes energy on disliking others. It’s a pleasant realization. I really believe I must have hated myself to treat my abled and active body with such disdain, and to have thought I was so boring when my life was always so full of unique friendships and passions, and to have constantly been comparing myself to others and feeling so shortchanged. Not to say I don’t have moments where my body is a source of insecurity, and I certainly get frustrated with the slow, meandering pace that my brain operates at now. Somehow though, over the years, the negativity has become tempered with “but tomorrow I will be grateful for what I do have”.

A lot of my current (relative) level of peace has to do with getting almost all the way off of Lyrica and starting to paint again (more about that soon!). A lot of it has to do with this blog and the wonderful people who have introduced themselves and the strong sense of community that lives here. Also through the groups I have been invited into because of my writing here. A lot has to do with therapy, some of it with self-therapy techniques, and some with the actual, lasting progress I have made along the way. It’s easy to look back at three and a half years of illness and feel overwhelmed with all the life I have not lived in that time. I had planned to have a career and a child by now, and perhaps to have bought my house.

Ten years ago, I would have only seen that big dark cloud of not measuring up materially to the person I had set out to become, and I never would have noticed all the glints of silver lining to be found from where I’m standing in the rain. Three years ago, I feared there was no happiness or peace to be found amongst the terror and the overwhelming nature of being sick in my early twenties. Two years ago, I knew that others lived with diseases and still had fulfilling lives, but the knowledge just made me angry. A year ago, the knowledge that others out there were dealing with similar things and did not want to die every single day started to give me hope, and this blog helped me find those people and learn the self-acceptance that I needed so badly.

Now, I want to start to figure out what I can do to give back, but I have taken a pretty big set back this week by conscious overexertion so I could spend time with my family and my mom while she was visiting Oregon for ten days. During my recovery from this, I will be writing more and pondering what I have to contribute, and where the chronic pain community would be best served by what I do have to offer.

Thank you for reading my blog, thank you for reaching out to me, thank you for being so understanding and gentle, and so patient. I couldn’t have done it without you.

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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.

6 responses to “Chronic Lessons: Then and Now”

  1. abodyofhope says :

    I’m so thankful I read this particular post today! Thank you for sharing how difficult it was for you in the beginning when everyone else is in a different place and positive words don’t go very far. I think I needed to be reminded of what that was like, and I appreciate you diving back into such a difficult headspace to share the reality of that time. Everyone goes at their own pace, and has their own learning experience through an illness journey, but I watch you suck the marrow out of what you are able to learn, and then give it back in wisdom for others to devour. You are already giving so much back to the community in the way you inspire and encourage others both in the way you write as well as one on one through the relationships you have made. Continue doing what you are doing, and more and more doors will open to you.
    Love you, girl

    Liked by 1 person

    • Jessi Finds Out Fibro says :

      Love you too babe!!! ❤
      I think I periodically dip back into that headspace against my will, so one a particularly bad day it's not much effort to go back and remember how it felt, but I don't have to stay there too long anymore and for that I am incredibly thankful.
      It made my month to hear that you think I'm already giving back. I needed that right now, I feel like a massive failure in regards to making progress towards being able to volunteer or go back to school or work, and for some reason I wasn't counting reaching out to others as meaningful work, but it is, and it makes life worth living. If I can be a mirror for others to see their own illness journey and progress in, especially those who are so much farther ahead of me, I must be doing something kinda right!
      Thank you so much for your beautiful message this morning, my dear. Totally changed my mood. I have been working on a few posts but oh the brain fog and scattered thoughts!!! It'll get there though, lol.
      I hope you're doing alright today, I hope that something makes you laugh, and I wish I could give you a huge thank you hug for always brightening my life up. Sometimes it feels like I'm just bumping into walls in the dark until you cast a light onto my thoughts and I can see so much more clearly again. I hope you remember that is a gift which you choose to share with others too, and which is immensely valuable, especially to me!!! ❤ ❤ ❤
      love and hugs xoxoxox

      Liked by 1 person

      • abodyofhope says :

        Oh girl, I just wrote you a huge message and WP erased it. Well, my fibro fingers aren’t happy today but I want to share that your post was included in a spoonie emag! Congratulations 🙂

        http://paper.li/CRPSDocumentary/1335643460?edition_id=147c23e0-17a9-11e5-92a9-0cc47a0d1605#!tag-chronicpain

        Here is the link.

        Thank you for the virtual hugs. Sending one back to you.
        I’m so grateful you are in my life. I know it can feel like going from 60 to 5 mls an hour, esp when you were working so hard to accomplish your goals. You still are now, and you are working 5x harder. They are just different goals, and as you described above, what you value has changed and your definition of success is different.
        People so often say one day God will use this struggle for something good. Well, I think we can shine our light during the storms- we don’e have to wait until it all passes and the sun comes out and things are perfect. That isn’t real life- not mine anyway! You demonstrate that kind of giving and loving of others around you in the midst of your battle.
        I wish it wasn’t such a struggle though, bc I know you would be loving and shining no matter what.
        Thank you so much for sharing this post. I haven’t stopped thinking about so many things in it. Love you. xoxoxoxo

        Liked by 1 person

  2. livingwithobstacles says :

    Great blog as always. It is great to be reminded by others how difficult this journey is. It is so hard to look back sometimes to the beginning of this illness and realize how far I have come. I no longer think of dying like I use too. I believe my faith as made me realize there is always hope on earth and we can always find a purpose it just takes time. I have learned to be more patient with myself and try not to push myself beyond my limits. Thanks for reminding us our story isn’t over yet…

    Liked by 2 people

    • Jessi Finds Out Fibro says :

      Aw, thank you darling for your sweet words. I agree, it’s just nice to not be alone, as much as I wish I could heal us all with one wave of my wrist, I am grateful beyond words to be surrounded by such good company.
      Thank you for sharing the progress you have made over the years, it helps for me to hear that others have come from the bottom and found some peace (at least more peace) over time. Our stories are definitely not over yet! ❤

      Liked by 2 people

  3. Joyce Carey says :

    Thank you so much for this uplifting message. I was diagnosed a year ago and I know acceptance is a huge part of learning how to live differently it certainly isn’t an easy thing to accomplish. You give me hope I can get to that point, and find the good in it. I try to find something to be grateful for each day, thank you for your inspiration! !

    Liked by 1 person

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