Validating The Complexities of Illness

I have been incorrectly diagnosed numerous times with serious, sometimes life altering conditions:

  • Lupus
  • Rheumatoid Arthritis
  • Meniere’s Disease
  • Fractured Spine
  • Kidney stones
  • I’ve been told it could be: a brain tumor, breast cancer, bladder cancer, cervical cancer, Multiple Sclerosis, Lou Gehrig’s, a stroke

I have endured numerous doubters or all out accusations of being a liar:

  • “How sick can she really be”?
  • “Fibro is that “fake disease” that people use to get Disability”
  • “Have you considered this may be mental?”
  • “Patient claims that Fibro has changed her entire life”
  • Yeah, your Mom’s so “ill”
  • “Oh my God, now she’s claiming to be on Chemo? They don’t use Chemo for Rheumatoid Arthritis”

I have endured the following symptoms, some without ever finding a root cause:

  • Spent close to 18 months in bed (or on the couch)
  • Lost my ability to walk unaided
  • Had my fingernails come off
  • Watched for gangrene in my foot
  • Lost my hearing in one ear
  • Woken up with completely blurred vision

I have lived through the following medication side effects:

  • Lost so much weight, I weighed less than I did when I was 12
  • Became suddenly (and thankfully, temporarily) suicidal due to a high dose steroid blast
  • Had my entire personality change and endured horrendous mood swings
  • Urinated blood
  • Had my hair break off, come out by the handful and completely thin out

As a result of becoming chronically ill, I have:

  • Lost my career
  • Gone bankrupt
  • Nearly lost my house
  • Lost countless colleagues, family and friends
  • Had to give up any hope of having a child with my Husband

I have reached my breaking point so many times, I:

  • Begged Jesus to stop the pain or let me die
  • Screamed for so long, my Husband cried
  • Decided I could not go on this way forever

And so let me now get this straight, I:

  • Have lost trust in myself, not the Doctors?
  • Lost faith in myself, instead of others?
  • Have allowed others to insinuate I am weak or making bad choices because I take Opiods to live
  • Have doubted that it’s that bad, considered it’s all in my head, that I don’t try hard enough or that I could do better
  • Have had to give up on many hopes, plans and dreams

WHY?

  • Shouldn’t enduring all I’ve just listed and still getting out of bed every day, instill me with pride?
  • Shouldn’t I be angry, instead of grateful?
  • Shouldn’t I be despondent, instead of hopeful?
  • Shouldn’t I trust, that with all the mistakes made, that *I* know what is best for my body and mind?

Why do we allow what others project to be put upon ourselves? Why do we question our sanity, when we know all we live with? Why do we doubt our strength, tenacity or experiences. Why do we allow our suffering to be questioned?

Often, the true complexities of living with chronic illness are overlooked or never addressed. Sometimes, the way it all affects our mind, body and soul is underestimated. But just because that happens, doesn’t mean it should.

So, today:

  • Have faith in yourself, instead of placing it in others
  • Remember to trust yourself, above all others
  • Validate how much getting sick and staying sick sucks
  • Be as good to yourself as you are to the person in the checkout line
  • Have hope

Because you’re worth it. ❤

Posted by

Fighting with Fibro and Living With Purpose. Mom, Wife, Blogger and animal lover. Fighting with Chronic Illness on a minute by minute basis; sometimes winning.

7 thoughts on “Validating The Complexities of Illness

  1. My heart hurts for you. My dear sister was seen at Johns Hopkins about 3 weeks ago. She was diagnosed by 4 different rheumatologists to have rheumatoid arthritis. The doctor at Johns Hopkins told her she does not since her joints are not swollen She is going down and getting off the prednisone and was put on gabapentin, which is already helping her. She has been on prednisone and treated with biologics for 5 years with basically 5 lost years.

    She had a nerve conduction and EMG today with negative results. JH doctor suspected she had plain old neuropathy. So today her internist asked if anyone had ever mentioned fibromyalgia to her. She laughed because I’ve been telling her for a few years she probably has fibro. She told her doctor I am on gabapentin and had been diagnosed 9 years ago.

    It’s inspiring you are able to write with your issues. God bless you!

    Liked by 1 person

    1. Thank you. That’s a huge compliment. I don’t feel inspirational, I feel like we’re all consumed with really tough symptoms and issues. So I just try to write about living with them. It took me a long time to feel validated and that was tough-so I just hope that what I went through can help someone else.
      Wow. I’m both sorry about your Sister and happy for her. As my post discusses, I was first diagnosed with Lupus and went on Plaquenil for a year, before then being diagnosed with RA and going on Methotrexate injections. Neither helped and I was eventually diagnosed with CFS and Fibro. Funny, I was more upset over the Fibro diagnosis than either Lupus or RA-I just felt like there was a worse stigma and less help. My fears turned out to be correct. It’s really tough though to be diagnosed, come to grips with it, go through all the treatments and then find out they were wrong. I still wonder now if my ongoing stomach issues are a result of the Methotrexate and Topomax. Every other day low dose Prednisone did help. And does not have the same dangerous side effects. I have wondered about trying that again.
      Hopefully now that your Sister got the correct diagnosis, she can get some appropriate help and feel a little better.
      I’m glad Gabapentin helps you. I wish I had the same luck with it.
      I’ll be thinking of you both and sending you love and well wishes.

      Like

  2. Oh Stace, I’m so sorry for everything you’ve had to go through. I feel I’ve had a similar path – it’s awkward, frustrating, painstaking and nightmarish, and it can suck the soul of out you. You’re so right with this, absolutely spot on – “Shouldn’t enduring all I’ve just listed and still getting out of bed every day, instill me with pride?” – and yet all too often we just kick ourselves, feel crappy about everything that’s happened and the situation we’re in, through no fault of our own. Very well written post that’s sadly all too relatable, to me and I imagine many others..  ♥
    Caz xx

    Liked by 1 person

    1. Hi Caz, while I’m sorry you can relate to this, I’m all too happy too. It seems like so many of us that are chronically ill have very similar experiences, despite our different conditions. And sometimes its all too easy to drown in it. Overall, I think I’m still a positive and hopeful person, but constantly looking on the bright side can become exhausting. Which is why I wrote this. Acknowledging all our struggles and surviving day to day is just as important as keeping our positive attitudes. Thanks for reading and commenting.
      I have a huge problem with WordPress, I can’t like or comment on anyone else’s Blogs and I don’t know why……you’ve had some really great posts lately, that I enjoyed. So thank you!!

      Liked by 1 person

  3. Stace, What a wonderful post. So many of the things you talk about are a universal experience for spoonies. We all need to find our own way to stop looking outward for acceptance and love and begin giving those things to ourselves. The best friend you ever have should be yourself! Sorry I was so late in getting over here to read. Things have been a bit crazy, but I’ve been thinking of you. I hope you’re enjoying some good days and get to spend this coming holiday with those you love and enjoy the most! Xx

    Liked by 1 person

    1. I just returned the favor with “being late”-sorry it took so long to reply!! I totally agree with what you said-it’s a tough place to get to, but an important one! In my opinion, acceptance is one of the most important steps. Have a wonderful holiday and thanks for the comments!!

      Like

      1. It’s lovely that you respond back at all. No need to apologize about timing. Especially not to me. I think we need to institute “spoonie time” and relax those rules entirely! Especially if it in no way inconveniences someone! Sounds like a great concept to me. Xx

        Liked by 1 person

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