The Worst of the Struggles

I’m not doing well.  Really, that’s a huge understatement.  I don’t have any clever sentences or pieces of humor to lighten this terrible disease we struggle with day in and day out.  Still outside of personal struggles with our symptoms, pain, fatigue, depression, limitations, grief, loss and so much more the hardest thing to deal with is other people.  We have to fight with our doctors and insurance companies for help, with our friends and family for understanding and empathy and the world at large for a little bit of room to move not like a “normal” person.  Even worse is when our illness is used against us, when we are treated like criminals, drug seekers, malingerers, liars, and so much else.

The disability hearing was emotionally painful beyond words.  It was the sum of all those years of everyone from doctors to employers to strangers to friends accusing me to my face that my illness was nothing more than a farce and if I just tried harder I could go back to being a normal person.  It was devastating.  I would give anything, anything in this world, to have my life back and suggesting otherwise, well, it’s just a button I think that everyone single one of us can’t handle being pushed.

This is a terrible life, most of us don’t want to live it at all.  However, we do.  We fight, we fight in the hopes of getting better.  We fight in the hopes of just finding a way to balance the life we are leading now.  We fight for the little moments of joy that are so very rare.  We fight to find meaning in the darkest of places.  Still life throws us things that make this fight harder and being attacked for being sick is the hardest for me to overcome. It happened once a long time ago, leaving quite the scar.  It happened again recently where my limitations were used against me.  I find it hard to describe the feeling of helplessness and betrayal.  I don’t think the mental repercussions were considered. That’s this life though, right? You don’t get it unless you’ve got it. Between the two I’m done.

I work and I fight and I work and I fight and I work and I fight and it feels like I just can NOT catch a break.  Maybe it seems like I’m complaining about a few little things, but really, I’m just not willing to list all the fronts I’m battling at the moment.  I’m tired.  I’m sick.  I’ve had enough.  I need a break.  Don’t we all?


About leitis23

I'm an adventure, living life to the fullest, and doing stupid things enthusiast, whose life took a serious left turn into chronic invisible illness. My saga of adventures in the world and in medicine never fail to keep life interesting.
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11 Responses to The Worst of the Struggles

  1. Janet Logan says:

    Blessed be. I haven’t even tried for disability. Invisible illness just can’t be proven, and (my opinion) in the current political climate, will never be approved.

    Janet – Fibromyalgia, Myofascial Pain Syndrome, major depression

  2. Jan Groh says:

    I’m so sorry for this protracted battle you’re having to fight for proper medical recognition. It’s seriously awful and debilitating. I see it happen over and over again in our community too (a friend with VEDS keeps getting denied by a very ignorant judge in my state), which is why I’m so rabidly blogging and educating on Twitter and everywhere I go about how common EDS really truly is. It’s far from rare, it is rarely diagnosed. But because it is invisible, these narcissistic mind blind doctors and judges don’t recognize you. Hang in there, keep fighting if you do nothing else but hang on by your finger nails. We have your back. You deserve better. Say that and believe it. Cuz you do. Hugs.

  3. Prayers headed your way. We all need them. You are not alone. You speak for many of us with invisible illnesses. I have just started the disability train. I fear my journey will be as painful as yours currently is.

  4. Moira says:

    I am so sorry you have been re-traumatized by the hearing. I just wanted to let you know I understand your pain, grief, and hopelessness. I have no words of wisdom except that what you are going through is a nightmare — most of all because it feels like no one will help you. As you said in an earlier post, this kind of chronic pain is the definition of torture.

    I also wanted to share how shocking it is to experience the difference of what the medical establishment is capable of when they know about the disease you’ve been diagnosed with. I just went through a year of breast cancer diagnosis, two lumpectomies, lymph nodes removed and 6 weeks of radiation. It was like super heroes coming to my rescue. Panels of doctors discussing my case, meals dropped off, prescriptions picked up, gifts, prayers, financial assistance effortlessly approved, social workers popping in the doctor’s office when a tear dropped from my eye.

    It was a parallel universe. I hope this isn’t depressing you more. But to me (I suffer from fibromyalgia, chronic pain, chronic fatigue and an auto-immune disorder in my eyes) to see the difference was to shed even more light on the cruelty inflicted by doctors, et al, on people like you and me — the ones no one has any answers for. My prognosis for the cancer is excellent, but I am in deep despair over the pain and exhaustion it’s caused and the meals have stopped and many of the doctors no longer consider me under their supervision. I’m back out on my own piecing together my survival.

    One incredible thing did come out of my diagnosis though — I am finally seeing a doctor who is a pain specialist — and it is making a difference in my physical (improved pain management) and more importantly my mental state, because I don’t feel like she is going to give up on me. She is actually a palliative care specialist, so, well, she never gives up, until the end, sadly. I hope this post isn’t too much about me. I feel like sometimes simply having someone acknowledge your reality can help. This is a nightmare. The cruelty is real. I hope you can find a way to heal from this setback and thrive in whatever way is possible.

  5. Juli says:

    I want to take this moment to crudely answer: FUCK YEAH WE NEED A BREAK! My SSDI trial was nearly as bad as yours — I cried the whole time, from pain and frustration and loss of self. Who was I in dire pain begging for my money back? I did win. How could I not. I went from being productive, contributing citizen to chronic pain screamer in the course of one surgery. My whole great life burning like the invisible flames burning my feet and ankle, and now I burn everywhere. So, fuck. Yeah. I need a break. I found out about 10-days ago that I have a small brain p. That means surgery. Surgery is NEVER a good thing with CRPS. But I WILL do it to remove the tumor, right? The month-long headache relief alone will be worth it. And there’s more and worse symptoms. I can’t walk straight, but that I’m walking at all is a flippin’ miracle! There is so much piled on my tumor-ridden head, I’ll scream again: I need a fucking break from the constant pain, the pressure to be kind to others who don’t understand, my family and friends who SHOULD understand. I need a freaking break. A long one. I tend to be suicidal; our disease is know as The Suicide Disease. More people die from suicide with CRPS than any other cause. I can totally understand why. I’ve tried twice, but now I’m a part of the semi-colon movement. Basically, an author chooses a semicolon by choice. Just as easily could have used a period for a full stop. But instead, the writer chose the semicolon, a short break between two connected ideas. I’ve decided I don’t want a final end. I just need some short breaks. In honor of my most recent psych stay for suicidal ideation, I’m getting a semicolon tattoo on my left hand where my pointer finger and thumb make the “L” and inside the period there’s going to be an orange CRPS awareness ribbon. This week is National Mental Health Week, so I want it done this week, for sure. Sure, tattoos are über dangerous for CRPSers, but brain tumors are, too.

    So let’s all just take a fucking break. If the language offends, pretend it says bleeping. But I hope it doesn’t because up until Queen Victoria, f-bombs were everywhere.

    Now I’m going to take my break. I haven’t slept in over 40+ hours, headache persists, and I’m flaring in my feet. I love this blog. She is so talented. So slick. Hang in there, Honey, so am I. We’ll make it after this small commericsal break . . .

  6. Cari says:

    Where I go when it’s that dark.


    Vast emptiness.
    Universe upon universe of utter nothingness.
    No star, no moon, no sun.
    Drifting rapidly from all I’ve been able to become.
    Feel it slipping yet unable to stop it.
    Not understanding how to stay the course.
    The paradox of the void.

    It’s so dark out here…

    Dipped in black tar and hung out to dry.
    My body becomes nothing but ashes
    that drift away on the subtle wind,
    leaving the empty noose to rock gently back and forth.
    Hands and arms so bitter cold and tired reaching for the life ring.
    The tremendous waves taunting me, bashing against my body.
    The life ring drifting slowly further and further away.
    Sinking now into the dark void of myself.
    I open my mouth but my breath eludes me.
    No air to fill my lungs and bring me strength.
    My mouth is full of blood.
    Every cell in my body quaking…
    shuddering in fear and despair.
    Eyes burning.

    It’s so dark out here…

    Can you hear me?
    Can you see the screaming inside my head?
    I have no face.
    Ripped away into the nothing.
    My heart cunningly wrapped in garments prepared for the tomb.
    Layer upon layer wrapped in the paradox of the void.
    Arms flailing, legs kicking, heart pounding.
    It’s all inside.
    Laden down into internal torment.
    I cannot hear. I cannot see. I cannot breath.
    Fighting an enemy I know not.
    It’s so loud in here yet the silence is deafening to my ears.
    Seemingly eternal anguish.
    Silent resignation.
    Can anyone hear me?
    Is there anyone there?

    It’s so dark out here…

    Cari Cline

    I reach for my poetry in my darkness. Maybe this one can help you on your way. YOU ARE NOT ALONE. Ironically (or not) through your writing you are the one that has started to show me I am not alone either. Your writing is just brutally real and I live, sometimes often, in that “gap” (stagnant space in time) as well☯.
    Were there but a way to make it all cease.
    Keep fighting the good fight my friend.

    )))))))))))))))))))))))))))))))))))))))))))))Strength for the journey)))))))))))))))))))))))))))))))))))))))))))))))

    • leitis23 says:

      Thank cari, that was really beautiful and it does describe how it feels sometimes. The whole experience is like sand slipping through your fingers when you’re tryin to explain.

  7. Cari says:

    ➨➨➨➨➨➨➨➨➨➨➨➨➨➨➨Strength for the journey▶▶▶▶▶▶▶▶▶▶▶▶▶▶▶▶▶▶

  8. Diane says:

    So very sorry for the ugly disability hearing. I sincerely hope that it is worth it in that you get disability payments. FWIW, My sister had a similar hearing (“the judge just pounced on me!”) and luckily she got SSDI. it is just so unfair.

    I have 24/7 headaches as a side effect of brain surgery to remove an acoustic neuroma 9 years ago. I’m told my case is very unusual, that none of my surgeon’s other patients have such a problem. Right. As you can imagine, I’ve done lots of doctoring. Pills, meditation, acupuncture, ointments, talk therapy. Nothing works works effectively except narcotics, and I only want to go there when I’m desperate. Luckily I’m on social security and a pension (plus other investments) so I don’t have to try to get disability. Botox is sort of working so I am a tiny bit hopeful. But as you know, it’s hard to get understanding from friends and family because I look fine. And I’m good at faking it.

    • leitis23 says:

      I guess it’s just the luck of the draw with the judge plus I really think they were drilling me because I’m young. If I were twenty years older I don’t think I would have been denied at all. Oh well. It’s rough being a patient with a rare side effect. It makes them suspect. Interestingly botox is being increasingly used for pain treatment. That is if you can get insurance to cover it. They wanted to inject some into my mom’s hip flexor because of pain and mobility problems, the insurance denied it because it was cosmetic. That makes me laugh, my mom was going to have the hottest hip flexor ever. Good thing the insurance company knew better. It seems you aren’t going to get great understanding from most areas of the world. We look fine. But you’ll get understanding here, with people fighting the same fight. Who know what it’s like to be discounted, dismissed, and desperate. So take care of each other here.

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