Pain is my fishbowl

Many of us are aware of the U.S. Marine Corps tagline, “Pain is just weakness leaving the body.” There’s also a similar, often-referenced quote by Lance Armstrong:

Pain is temporary. It may last a minute, or an hour, or a day, or a year, but eventually it will subside and something else will take its place. If I quit, however, it lasts forever.

By these definitions, my body is a tomb of never-ending weakness and I’m in a perpetual state of temporary pain (and in my case it doesn’t matter if I keep fighting or quit, the pain is still right here with me). Don’t believe everything you think, it was created by someone else’s perspective first.

When people freak out about bruises or scrapes on my body I have never understood the reason. What’s the big deal? Only in these aesthetic instances can I spout the “pain is temporary” mantra and people will understand that I’m just good at sucking it up, so to speak, and they leave it at that.  Most people do not understand that there is deeper, unseen pain that can last forever in our temporary bodies.

©2015, Glenn Jones/Ikona Photography H/MUA Ashley Caudron
©2015, Glenn Jones/Ikona Photography
H/MUA Ashley Caudron

Recently I realized I haven’t understood why visible surface injuries can be fussed over so much because I live with constant, chronic, incurable pain. Pain is my fishbowl. I’m swimming – or sinking – in my sweet, deep, closed and visible (yet invisible) pool.  Or you could call it a snowglobe. So a visible bruise is not a big deal – to me. It’s just something on my body that is temporary and it’s also something I’m positive will go away. It will heal. So I needn’t pay any attention to it since it’ll fix itself in time.

Image by Charis
Image by Charis

It is the rest of me – the bruised, scraped, scarred, inflammed, broken parts inside – that I wish people would freak out about.

“Oh my gosh Charis, your vertebrae just got stuck to a bone spur, I watched it right there on your x-ray! Omg, how ugly, are you ok? How did that happen? I’m so sorry! That looks like it hurts a lot! I don’t know how anyone could possibly endure what your body looks like.”

Instead it’s, “Charis, how did you get that bruise on your elbow/knee/side?” “What bruise? Oh, that, yeah, I didn’t even know it was there. Hmmph, who knows.”  “But doesn’t it hurt? I mean, look at my bruise here on my arm, I got it doing xyz and it hurts like hell.”

People can only talk about and almost fully understand what they can relate to. If we could wear our pain on the outside we’d certainly get more attention, support, and care than we could ever imagine. We’d believe our diseases were understood by people who aren’t chronically, incurable, invisibly ill. People would be able to compare our physical pain to their own because seeing is believing. Should we have to walk around with portable x-ray machines showing the white, scarred inflammation and fused bone spurs on our hips and spines for people to see our pain? Should we have to wear a colostomy bag around our neck to show the constriction our diseases cause? Should we have to show a diagram of our brain on our t-shirt to prove we’re mentally ill? Should we have to walk with our canes in the airport even on the days we don’t necessarily need one just so we can board the plane first for that aisle seat because we’re tired of people giving us judgmental looks or even telling us, “You’re too young to be disabled” or asking “Do you need this pre-board pass on the basis of disability? We only give these to people who are disabled” when they didn’t question the person before us who is 30 years our senior but who doesn’t have a visible assistive device?

Photo by Denice Ristau
Photo by Denice Ristau

If you were to see my internal pain on the outside I would be purple, red, black, and blue in every place a joint exists.  I would have protrusions of inflammed, red, scarred joint-on-bone poking eyes out.  Spurts of fire would escape my spine like a carnival ride, causing your brows to singe and your palms to sweat. If my pain was on the outside for all to see I would make money at the circus or the fair as the main attraction – I’d lead the freak show. And I’d be able to afford my rent.

Trust me, I’m not discounting bruises and scrapes; they can be extremely nasty and last a long time, but they DO eventually heal with rest and care and proper treatment.  Ankylosing Spondylitis doesn’t.  Multiple Sclerosis doesn’t. ALS doesn’t. Fibromyalgia doesn’t.  Schizophrenia doesn’t. Cystic Fibrosis doesn’t. There are too many to name.

Selfie by Charis
Selfie by Charis

I understand that the idea that my beautiful body has so much terror and brokenness inside is difficult to comprehend on any level. If I can’t even fully understand why my body has forsaken me as well as what’s going on inside me as inflammation silently, fiercely, suffocates me, then how can anyone else?

Listen to our pain, it’s the only way you can see it.

Love us.


Advertisements

14 thoughts on “Pain is my fishbowl”

  1. Hi Charis

    You have suffered a lot.

    My AS started at age 18 – I’m now 49.

    For me (and others) there certainly is a gut / diet / bowel link to my condition.

    Maybe we are lucky – but it frustrates me that our medical practitioners ignore all our successes and the wealth of proper research done by Fasano, Vojdani, Ebringer.

    If I’m giving you information you already know then I apologise-

    http://www.arthritisforum.org.uk/stories/storysean.html

    Like

    1. Hi Sean,

      Thank you for sharing this information. I am sorry it has taken me this long to respond – I am easily overwhelmed by the responses I get to many of my posts and I should do a better job of responding to those who take the time to read what I write and then craft a comment.

      We have to share our stories to push awareness, but also to feel we are being heard. So thank you for sharing yours here.

      Blessings,
      Charis

      Like

  2. Thank you for taking the time and writing this beautiful entry. I say beautiful because you put how it is so eloquently. It is like being in a fish bowl, or a snow glob. I often mention how I feel trapped inside my body, but it’s not really my body I’m trapped in, it’s my illness.

    Like

  3. Again, you have hit the nail on the head. I rarely use my cane or my walker, especially when I’m out shopping. I use the cart as a walking assist. The other assists just get in my way & annoy me. I have no idea as to how people have viewed me over the last 5 years as I’ve become more & more disabled. I now have an official caregiver for 17 1/2 hours per week. I’m not sure what the next step will be.

    When I got my first diagnosis of osteoarthritis, I said, “That’s cool. That’s just pain, it will go away” as I’ve said about every pain I’ve had in my entire life. When I broke my first toe, I asked my mother if I needed to go to the Dr. She replied that all a Dr. would do is tell me to tape it to the toe next to it & tell me to stay off it. So I walked 2 miles to hang out with friends at the Lake. I was completely unprepared for the pain that never goes away, that just gets worse the longer I live.

    I just had “The Talk” with my new caregiver about how she can’t fully understand what it’s like to be in this much pain. She tries, she really does. She’s a good & caring person, but she seems to forget about how bad the pain is. I’ll be groaning as I walk & she’ll ask me what’s wrong. And yes, her little bruises & scratches “hurt so bad!!!”

    I love your writing about this so much!!!

    Like

    1. Linea,

      As I go back through the comments people have left on my blog, I am able to piece together different parts of the stories of those who comment several times. Thank you so much for trusting me with a glimpse into your own life.

      I appreciate your words, “I was completely unprepared for the pain that never goes away, that just gets worse the longer I live.” They are so true.

      Like

  4. Charis, It horrifies me to hear your pain. I am a Lyme patient, so I understand pain and suffering. I am horrified by my own suffering, it is just that I hate seeing others go through it too. I just want to tell you about my biggest gripe. My gripe, Lyme disease is treatable. I, we (multiple-millions of Lyme patients out there), just cannot get treatment. In better financial times, I did get treatment and the treatment is more efficient now than when I got it, just so … expensive and insurance won’t pay, Most doctors won’t treat. I am sure you have heard this before. But before I knew I had Lyme I had ulcerative colitis, fibromyalgia (severe traveling pain), skin burned all over (like fire), no balance, fell, infeted muscles, mouth tasted like metal, zero sleep, brain fog, and many more weird symptoms and torturing pain. Conventional doctors gave me pain pills, and when I figured out they were never going to even look for a cause, I WAS FURIOUS!!! While on Lyme treatment (ah!!! a cause), most of this went away. I was so … happy, almost normal. But I knew I wasn’t cured. Patients know things like that even when their doctors do not believe them. But with my treatment jerked, symptoms came back. It was jerked in 2008 or 2009, don’t remember. But, the fibromyalgia did not come back, and some of my symptoms have remained much more mild than they were. Unfortunately, the oral problems did come back, slowly, but worse than ever. Have you ever read Dr. David Martz story? http://www.als-cure.com/antibiotics-als/david-martz-cured-his-als/ I just cannot help but wonder if you would benefit from any of the many treatments Lyme patients that can afford it receive. Have you ever had the Igenex urine PCR test? When all the blood tests failed, that is the test that came back positive for me in 2002. Immediate treatment was so relieving. Oh yes I did take the pain pills then, but eased o of them. The treatments are expensive, but if you have money may help you. I do hope your are not offended at this suggestion. I just hate to see all the pain and torture with no solution ever. God bless and have a good day.

    Like

    1. Hi GMD,

      Thanks for following my story so well – I am so glad my writing, though painful, resonates with your own experiences.

      We must continue to fight, no matter what.

      Regarding your treatment and test suggestions; we all must find those that work for us, no? Every body, every disease, every environment is so different, and it does take research and risks. Thank you for sharing.

      Like

      1. Thank you so much for your reply Charis. I know it takes time to do this. I will continue to pray for you. I do hope you got your disability. You have to have something to survive..I will watch your posts to see if you did get your disability. Just in case you ever wondered, I use GMD because that stands for great mimicking disease. There are more mimicking diseases than Just Lyme, for example syphilis. I keep researching, much of the time, trying to find a solution and a cure.

        Like

  5. Your word touch me. More and more as the days go by, they are me. Years and years of tests and negative reactions, then diagnosis, it’s or that or both but we need more tests. After years of complaining, guiltily, being chided for doing so. And I look back and see that I am able to do less and less as the pain gets worse. Waiting on tinder hooks for the next MRI, hoping that it will show that I have a reason for my deterioration. At least I see here that I am not alone and feel terrible for so many that are so much worse than I am. Hanging on is the only mantra..

    Like

    1. Indeed, you are so correct. We are NOT alone. Don’t ever forget that you have so many brothers and sisters who understand the struggles you endure.

      We all must remind each other we are in this together.

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s