Invisible versus Visible Pain: Awareness

❤ ❤ ❤

Love that image.

Sadly, we start to use this sort of language against ourselves after a time… It has to stop! Shame and guilt need to be taken off the shoulders of the chronically ill and those in chronic pain, there is enough to deal with besides having to “prove our pain” to anyone.

No one chooses to suffer constantly. No one. We all want to be happy, healthy, contributing, but you never know what someone’s suffering amounts to unless you have to live under the same burdens and restrictions.

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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 “Invisible versus Visible Pain: Awareness”

  1. waxingturtle says :

    Hi Jessi,
    This is so true! I am working to remember that people are human and sometimes have no idea what to say. Yesterday I tried going to a museum and I searched their website first, no where did it say it was not handicapped accessible. Got there, sure enough, it was not. We were first greeted by stairs and we went around the back thinking that’s where the accessible entrance was, and nope, but we were greeted by a less then compassionate volunteer that informed me they are not accessible and that she was, “pretty sure we advertise that we are not accessible.” They did not, it was no where on their website. So I politely let her know that perhaps they might want to update their site or make it more visible (we drove 30minutes to be there.) and she argued with me… anyway as we were walking away she says, “come back some time.” I said, “why, to NOT see the tour???” how crazy, and because I was pushing my wheel chair as I do have a few steps a day she says, “oh it looks like you two can handle it.” I was so beside myself. My friend who went in the spring warned me of the many, many steps but her daughter told me there was an elevator… I am constantly astonished at how ‘human’ people are. So, I turned to her and said, “i have a tumor in my spine, I only get a few steps a day.” Luckily she never said another thing…
    So even though my illness is in fact invisible, I had a wheel chair in my hand, and it still wasn’t good enough for her???? As you said, the shame and guilt have got to stop. But my goodness it is hard. There are so many things i’d like to talk to you about. I feel ashamed because my post last week was to adapt, improvise, overcome and how did I have that ability in this situation, other than to walk away??
    Like my sister trying to pressure me to babysit because she’s desperate after knee surgery and my illness isn’t so noticeable and I dont whine. while most the time she understands but she’s so desperate that she’s willing to put my health at risk and makes me feel like a jerk for finally saying loudly, “I WILL NOT WATCH THE BABY! I love him, but will not watch him” she says he’s easy because he’s 3 now and just finished potty training… well sometimes he wakes in the night and he and his bed need changed, now what? So after giving her that example I think she will back off. but my goodness. I’m so frustrated, and I’m trying so hard to keep positive but I just want to be left alone in my little house to take care of myself or hang with people who get it!! you know?
    I’m sorry for this rant, but your posting today couldn’t be better timed for me. THANK YOU!

    Also, I am making a “helpful links” page and wondered which one you would recommend for fibro or any other chronic illness you have experience with. Each link is related to someone I know/knew in their honor to signal that real people do deal with these issues!

    Thanks again for listening! I love you blog, things have been crazy here, I’m looking forward to things slowing down so i can catch up!
    Sincerely,
    Audrey

    Liked by 1 person

    • Jessi Finds Out Fibro says :

      I had this whole long thing I wrote in return the day you posted this comment, then my computer decided to restart out of the blue and I lost it, then I had a series of brain farts which resulted in me completely forgetting to reply to you at all.
      What I had wanted to say more than anything is that you did adapt, you did overcome, and you did make that extra effort to be heard, to take care of yourself, all of the above. You didn’t do one thing wrong in that outing! And you didn’t go off on that all too “human” volunteer! Good for you. Seriously, it must have been hard to stop after just one straightforward sentence in your own defense.

      As far as links for fibro communities go, my favorites are up (finally… I had the page up but way less link up until this month) on my Resources page: https://findingoutfibro.wordpress.com/about/resources-for-the-newly-diagnosed/ under fibro. I’m still working on populating the other conditions with links. It cracks me up that we’ve had a lot of the same ideas at the same time. Great minds and all that. 🙂 When you talked about your sister and her insistence that you could handle babysitting for her, I swear it read it just like it was something I had written, the underlying lack of understanding is just so hard to deal with when you come up against it like that.
      I’m so glad you did share your examples with me of how unhelpfully human people can be, I love reading your new blog dear! Thank you for your kind words about mine!
      I have that fantasy, about being mostly left alone on the bad days, except for those few people in my life, mostly scattered across the country, with similar illnesses or symptoms, whom I wish I could teleport into my living room at 3am when we are all still awake and in pain and just need to be distracted with good company, such as yourself!
      I hope things have slowed down for you! Again, I’m really sorry this reply was such a long time coming, I meant to be much more prompt, if my computer hadn’t restarted in the middle of typing!
      I know you get it, but still, I feel bad when I don’t reply every time.

      Jessi

      Like

  2. waxingturtle says :

    Thanks! I kinda thought maybe you’d become busy taking care of yourself and was totally understanding as I knew it was unusual for you to not respond!
    I know what you mean about wanting to transport people into your living room! I’ve often felt like, I really want to meet you! LOL
    I was in the ER saturday night with Trigeminal Neuralgia and Wednesday morning too and they added a Bell’s palsy to the diagnosis. the best thing to come out of it, is the meds! wow the meds! if i can push through the first two dozy hours after taking them, I can function more than I have in a long time. but i do know i need to rest or it wont get better. but the meds, oh how wonderful!! too bad i had to be in excruiating pain for four days first! things seem to be on the mend, my lip is finally feeling kinda like it’s trying to move, so that’s good.
    in my blog, i’m so torn about whether to write about very personal stuff or stick to the lessons i’ve learned while sprinkling in experiences to add credibility. I’m worried about getting caught up in all the abbreviaitons and labels, know what I mean. I want to share this story, but am yet looking for the lesson in it. I’m sure I will find one, i always do.
    meanwhile, with the drugs i’ve been more productive at home… because the walls are close enough to keep me from falling over, the unsteadiness and balance issues are huge, but i’m getting through them, taking breaks and all. I’ve got so many pills to take in a day, i’ve written a schedule and set alarms on my phone to keep me on track. I have one pill i have to take 5 times a day! I dont think i’ve ever had one with that frequency, it’s funny…
    so with this illness i came up with a nick name: Limp-Faced-Louise (louise is my middle name) because when my husband had it, to lighten the mood, i called him, Stroke-faced-steve! lol now he admits it wasn’t as funny then, but it is now. we try to keep the humor…
    thanks for listening and being a good buddy! I appreciate it. These illnesses are affecting my only good eye and i can only read/be online for so long before it becomes a problem. so if you dont hear from me that’s why. and i’m on the mend, so it shouldn’t be too much longer. I am dedicated to continuing my blogs though. so i’m making sure i save energy for them!
    take care, and thanks ever so much!

    Liked by 1 person

    • Jessi Finds Out Fibro says :

      It is so odd, but kind of awesome, how we have so much in common but are separated by so much distance! I have TN too and a few months ago was told over the phone it might be Bell’s Palsy, but then they just sent a prescription to the pharmacy and didn’t even want me to come in because I had just had CT scan of my brain that came back “clean”. Whatever. I spent weeks recently fading in and out of horrible agony, and I am so sorry you have to suffer with that pain as well. I have Occipital Neuralgia as well, because, yay, I am just lucky like that! lol.
      I am above all grateful that you received pain relief. You deserve that so much. Good for you for being able and willing to go get the help you needed. I know it often takes days, as unfair as that is really is, but you got it taken care of in less than a week and that is awesome! So glad you’re on the mend love. Hopefully you’re able to get full function of your eye back soon, my ON and TN effect that so often, so I totally understand.
      Your nicknames for each other just illustrate how strong the bond between the two of you is. That’s adorable! We need humor in these illnesses and conditions. The more laughter, the better, even if it’s at ourselves. 😉 Like when I have to describe around the words I am forgetting (last night it was “the feel good when sick pills that i never finish that the doctor gives you” all because I forgot the word ‘antibiotic’. This morning it was three more forgotten words that I had to shrug and laugh off. My boyfriend is just getting comfortable with laughing about it. Not really there yet, lol, but I’m all about laughing your way through the worst and most painful times, as much as possible. Laughter is empowering. ❤

      As far as being torn on the content of the blog, I completely understand. I go back and forth on that same issue, because I want to bring in readers who are just diagnosed and feel that utter hopelessness that washes over your whole life for a little while, and the grief. But I haven't completely finished grieving myself. I'm trying to offer my life in real time in addition to some lessons learned, knowing full well I have so much more to learn ahead of me. But I started this with a completely different intention, which was to link to medical journals and studies, and dig up as much information as possible for new spoonies. I just generally wanted to increase education and understanding, because everything I learn about the physical changes in my body from fibro, the stronger I feel for surviving all that. I'm finding I have to get a lot of stuff off of my chest before I get to a point where I feel comfortable being an educator in that capacity. I need to understand myself better first! And this blog is helping me do that! Looking back at times that were tough just in the last two months I can't believe how far I have come and how much I have just sat with the pain and learned to bear it no matter how awful. Two years ago I was screaming and sobbing in doctor offices all across the city, almost every day of the week, just begging someone to "FIX ME", not realizing how impossible that was. I still don't fully understand how I got from there to here, and I have to write about it a lot more before I will, I guess.
      The other all-important part of blogging is meeting lovely people like you, people who are strong and powerful because of what they are going through. I think in that respect, being honest about your personal struggles as they are happening can be a powerful tool for others and yourself as well. And it helps those who are healthy to understand how much the illnesses permeate every corner of your life. But only if you're comfortable with putting that stuff online. This whole chronic illness blogging thing is all about healing, not forcing yourself to do something that doesn't feel right. Your writing will naturally carry you in the direction you want to go.
      Either way, I think you're doing a fabulous job right now!!!
      Thank you for being so understand, and I absolutely extend that same understanding to you, I know unpredictability is predictable here. 🙂 And that is just fine. We can always pick up where we leave off, no matter how much time has to pass in between.
      I am rooting for your continuing healing from this latest, and also joining in your cheer for proper medication! I have hope that some day I will be taken seriously for my pain and hopefully at some point I will learnt to respect my body and brain enough to rescue them slightly from the acute agony that happens with ON and TN, and torn discs.
      Happy healing darling, and if I don't hear from you before next week, happy Thanksgiving as well!
      Sending you lots of love and spoons!

      Like

  3. Judi Hileman says :

    How can I find a good doctor who really understands Fibro??? I see a pain mgmt doctor, arthritis doc, my family doc. I have had my neck fused twice, after 2+ years of shots…#all kinds, nerve blocks, epidural….I finally had back operation and ave 2 rods, 4 screws and. Plastic spacer!! So now I can walk straight!!! But my hips are unbearable. I take pain pils when I have to go somewhere.
    Its so funny as I look perfectly normal. I wish people could see the pain!!

    Like

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