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Why Rainbows No Longer Appear Where I Tread, nor Butterflies Sparkle Forth From My Lips When I Speak…

June 15
“This is a sponsored post for Self Care Catalysts. I have been compensated through the Chronic Illness Bloggers network. All opinions remain my own and I was in no way influenced by the company.”

Written for the ‘Self Care Movement’ at the health-based app company, ‘Self Care Catayst’ The following is a ‘letter’ written to those in my life who have been unable to understand why at times my attitude seems ‘less than positive’ since I was diagnosed with Fibromyalgia.

Dear Friends,

You say you have noticed a change in my personality over these last couple of years. That I just don’t seem like myself, and that I can be a bummer to be around at times. You ask why I can’t ‘just be positive’, and find a way to ‘put a smile on my face’ regardless of what my problems may be.

So…did you miss the part where I have mentioned to you several times that I have a chronic illness? ‘Chronic’ meaning that it never goes away? ‘Illness’ denoting something within my body is not quite right? I may be going out on a limb here, but did it occur to you that being in pain almost all of the time may be the reason for my occasional ‘negative attitude’?

Did it occur to you being in pain all of the time may be the reason for my negative attitude? Click To Tweet

Why Rainbows No Longer Appear Where I Tread, nor Butterflies Sparkle Forth From My Lips When I Speak...

Look, I understand that you don’t ‘get it’. Most people don’t. Heck, if I wasn’t the one walking around in a 90 year old body at the age of 49, I wouldn’t ‘get it’ either! Unfortunately, I was not given the option to choose whether or not I wanted to comprehend the full depth of the disease known as Fibromyalgia.

Yes, I know you do not think it is a ‘legitimate’ disease. Neither does most of the established medical community. In fact, many of them do not even recognize it as being real. I have a friend with Fibromyalgia who’s doctor actually said to her, “I don’t believe in that.”…What?! Would you say the same thing to a patient with diabetes? Does simply closing your eyes tight, and denying the reality make it go away? What are we, 5 years old?

Fatigue that feel like the blood in our body has been replaced with cement... Click To Tweet

This is why FMS is one of the ‘invisible diseases’. There are no agreed upon bio-makers for doctors to point to for a clean diagnosis. We generally do not ‘look sick’. Meaning, our outside appearance does not match what we are truly experiencing on the inside. If it did, you would see a mass of red, blue, and purple bruises all over our bodies. Not to mention the fact that the fatigue that can take over our minds feels like the equivalent of replacing the blood in our body with cement…and you wonder why I’m just not as ‘perky’ as I used to be!

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So, if I am not as fun to be around as I have been in the past, and my countenance is a little long, it just may be that I am struggling with a level of pain and exhaustion you know nothing about. It may be taking every last bit of my energy stores just to sit there and carry on a conversation with you in a ‘normal’ fashion. Trying to hear what you say, and respond in an intelligent manner through the pea-soup thick fog surrounding my brain (another wonderful side effect FMS).

Here is the bottom line. I do not think you fully realize just how truly hard I am trying. It can take every ounce of will that I posses at times just to haul myself up off the couch, put together a semi-acceptable appearance, and force myself out the door to fulfill my duties. Not the least of which is the obligation of maintaining my personal relationship with you. So, be patient. Before you pass the judgement on me that I am just being a ‘drag’, ask me questions about my health condition. Want to understand what I face everyday so that you can at least empathize with my struggles.

The same funny, intelligent, quirky person you fell in love with in the beginning is still there. I am just trapped at times underneath the layers that chronic illness can throw over me. Relationship when times are good is an easy road to travel on together, but the willing endurance through the darker seasons for the sake of love, that is a friendship everlasting.

Willing endurance through the darker seasons for the sake of love THAT is friendship everlasting. Click To Tweet

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12 Comments

  • Reply halfa1000miles June 15 at 3:24 pm

    When I am having a crappy day, and just feel gross physically, I always ask myself the same question: “What if I felt like this all the time?” and I am always so thankful and grateful that I don’t have chronic illnesses or pain. I know I would be a completely different person if I did, so I try to emphathize. Chronic ANYTHING sucks, and when it’s pain, ugh. So sorry, Boo.

    • Reply kristine June 15 at 4:40 pm

      Haha! Thanks Linda! I appreciate the understanding, and the fact that someone used the word ‘boo’ to empathize with me makes my day! ?

  • Reply Julie June 16 at 1:04 pm

    Love the analogy of our blood feeling like cement.

  • Reply Chronic Mom June 17 at 10:33 am

    I love this. I’m a pretty easy going person, but sometimes I just can’t smile through the pain and then people think I’m not fun. My mother tells me every time she sees me what a fun person I used to be, what she doesn’t realize is that I miss that person too.
    Chronic Mom recently posted…10 things to do after a bad night’s sleepMy Profile

    • Reply kristine June 17 at 10:44 am

      Uhg! I hate the dreaded, “You’ve changed, you’re just not as ‘easy-going’ as you used to be…” (eye roll) Oh well, I truly hope they never do ‘understand’, know what I mean? Thanks Shelley! 🙂

  • Reply Carly June 19 at 12:59 pm

    (Stopping by from the small victories Sunday link up). I don’t have Fibromyalgia or any other chronic pain disease, but I have had a similar experience with anxiety & depression. It’s hard to be upbeat when you are suffer physically or mentally. What a great reminder to all of us to be more compassionate towards one another, to try to understand that we can’t understand, and to just give our friends a break sometimes. If we all lived like this – we’d solve a bunch of the problems in the world…

    • Reply kristine June 19 at 11:01 pm

      THank you Carly, and I could not agree more! 🙂

  • Reply Nikki June 21 at 11:56 am

    This is the hardest thing about an invisible illness, no one can see it.And it’s the best part, no one can see it. Kind of a double edged sword, isn’t it? I hate it when people say “But you look fine to me.” Okay. But that doesn’t mean I’m not a mess inside, and that it doesn’t take a lot of strength, mentally and physically. So much more than I ever would have thought. It’s hard to tell people what it’s like, you can’t explain it. I would never have understood, and didn’t, until I got sick. It stinks and in the same breath I am so happy it’s not affecting those I love as well. It’s not something I would wish on anyone, ever.

    Keep on keeping on! Hugs.
    Nikki recently posted…Is your Facebook Page a Desert Wasteland?My Profile

    • Reply kristine June 21 at 3:14 pm

      HAHA! I always think of that 70’s poster my brother used to have when I hear that expression. Illustration by Crumb I think…anyway, thanks Nikki! 🙂

  • Reply Brandi Clevinger June 23 at 6:13 am

    This is why I don’t have a lot of friends. I choose quality over quantity. Those that I’m fortunate to call friends, are life long friends. They support me no matter how much of a witch or withdrawn I can get. They forgive me before I have a chance to ask for forgiveness. Others are not as fortunate, and I pray for those individuals.

    I must admit, the title of this post made me chuckle because that is how I feel sometimes. haha Thanks for a great article, Kristine!
    Brandi Clevinger recently posted…Wake Up Happy by Michael StrahanMy Profile

    • Reply kristine June 23 at 11:29 am

      You and me both sister! 😉 Let me know what you’re Myers Briggs was, I’m interested in knowing! 🙂

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