all Fibromyalgia

Dearest Unbeliever ~ 4 Things To Know About Someone With FMS

October 5

To all who;

 a) Don’t know anything about Fibromyalgia, and are therefore ignorant of the facts

 b) Have heard of Fibromyalgia, but believe it’s  a nervous condition that is ‘all in the head’

 c) Acknowledge there actually may be something ‘wrong’ with me, but think I exaggerate my ‘condition’ ~

This letter is intended for you with the hope of clarifying any incorrect assumptions you have concerning FMS (Fibromyalgia Syndrome), and enlightening you on how those assumptions affect me personally.

1.  In regards to the belief that this is not a ‘real’ condition and those who ‘claim’ to have FMS are just looking for a little attention:

I assure you, I and the other estimated 400 million people in the world with FMS, did not wake up one morning and decide, “You know, I’m feeling a little emotionally neglected today.  I think I’ll talk my brain into coming up with a fake illness so people will take notice of me.  Furthermore, we’ll collectively talk ourselves into having painful joints/sharp pains that travel around the body/mind numbing fatigue/spots that make us want to scream when touched/skin that at times feels sunburned for days/oh, and let’s all make sure when we get up from our sitting positions we act like we’re about 90 years old, and lurch around the house like reanimated crabs with a limp.”

an open letter to those who beleive fibromyalgia is not real

2. Concerning your suggestion that all I really need is a) exercise b) a better diet c) a hobby, ect. (read: “If you weren’t lazy and undisciplined you wouldn’t have this problem”):

Well, I used to travel all up and down the streets and hills by my house.  That is until I started to experience ‘payback’ and could barely walk for days afterwards. So to use logic, the exercise didn’t prevent my increasing FMS flare ups, therefore more exercise surely won’t be the cure.

Also, to address the ‘diet’ issue.  Please, please, stop doing that thing where you stare disapprovingly for a few moments at my midriff until you realize what you’re doing and hastily look away.  Trust me, I am aware I’ve put on an extra 30lbs over the years since the Fibro really kicked in.  I am the one stuck inside this body 24/7 desperately wanting and hoping for things to change.  Before you judge too harshly, my disease is a central nervous system disorder. ‘Central’ meaning that from which everything else branches out from.  This means it affects almost all aspects of my person.  My body does not metabolize and lose weight like a healthy person’s does.  In fact, I work very hard to maintain the weight I am at.  Things could go wildly out of control were I not as disciplined as I am.  I bet you dollars to donuts (no pun intended), I eat far less than you do and consume much healthier foods.  So, walk a mile my friend, walk a mile.

3.  When you think I sound like a whiny hypochondriac:

If I have chosen to let you into a small outer room in the weird and wonderful space that is ‘me’, feel favored.  I seldom allow anyone in to the experience of my day to day with Fibromyalgia.  I assure you, I am sharing a fraction of what it truly feels like to have FMS.  I am highly sensitive to the fact that people can get burned out by the unintentional negativity those of us with chronic illness can fall prey to.  This is why I only tell you a tiny bit, and more often than not, say absolutely nothing at all.  You aren’t there to hear the cry of pain when my joints seize and I drop the full coffee cup all over the kitchen floor.  You don’t see me intently trying to control my facial features so the pain I feel going up or down the stairs in the theatre isn’t obvious to anyone looking.  You don’t realize the times when the blood in my veins has been replaced with cement, but I get up and carry on with the routine of the day anyway.

4. How to love and support those with Fibromyalgia, or any ‘invisible’ chronic illness:

We aren’t looking for anyone to feel sorry for us.  What we really want more than anything is validation.  Just to know someone believes our illness is real.  That we aren’t faking or exaggerating our symptoms.  We know we ‘look fine’ on the outside, but if you could turn our inside out, you would see the true face of our condition.

Support us through your patience and presence.  Remember that this is not our chosen life, but the life we choose to persevere and thrive in, regardless of the unexpected path we must now walk called ‘chronic illness’.

So to those of you who took the time to read this letter, thank you from the bottom of my heart.  And for those who chose not to listen, come here…..closer…come closer…why?…Cause I wanna whack you with my remaining ‘spoon’!

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  • © Kristine Kersting and ‘A Life Well Red’, 2016. Unauthorized use and/or duplication of this material without express and written permission from this site’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Kristine Kersting and ‘A Life Well Red’ with appropriate and specific direction to the original content.

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34 Comments

  • Reply Deborah Brooks October 6 at 4:48 am

    ooh that vanilla marshmellow topping looks amazing! Thanks for sharing your yummy looking recipe with us for meatless Monday!
    Deborah Brooks recently posted…Veggie Tortilla Soup & Healthy Tortilla ChipsMy Profile

    • Reply kristine October 6 at 6:33 am

      Thank you Deborah! 🙂

      • Reply Mary March 12 at 2:45 pm

        Sorry not sure I’m in the right area to comment. I usually don’t but enjoying and thankful for info. And so sorry you have to fight two problems. I’ve been using fragrance free lotion and sandalwood essential oil for pain cream for fibromyalgia maybe it would help someone else thank you for your posts

    • Reply Rena August 25 at 12:34 pm

      Great way to explain this disease, I have had it for over 30 years it’s like (permanent flu) perma flu. I try hard to listen to my body and avoid the things that trigger flares. My brother and sister (now on disability) have it and so does my Mom. People tell me I don’t look sick , or we are sick too and we can do things why can’t you, you just don’t want to. They take it as personal rejection, and say you can’t be sick All the time (What part of chronic don’t they understand). They add insult upon injury. It is hard to miss out on life events and watch others . Because it’s invisible you don’t get supported. Even a lot of doctor’s don’t understand and look at you funny. Thanks for being our voice.

      • Reply kristine August 25 at 2:08 pm

        You are SO WELCOME Rena! AND they start to get impatient with your ‘illness’. Sigh…I know, it’s just part of what we must deal with. Hang in there sister! Love to ya ♥♥♥

  • Reply GiGi Eats October 6 at 6:17 am

    Drooling over here. Definitely pinning this deliciousness!
    GiGi Eats recently posted…What A Hunky Flower!My Profile

    • Reply kristine October 6 at 6:34 am

      Thanks Gigi 🙂

  • Reply Raia October 6 at 11:46 am

    Your pudding sounds SO delicious. 🙂 Sorry you are struggling with fibromyalgia. I have a dear friend who suffers from it and I know her journey has been very exhausting.
    Raia recently posted…Homemade Remedies for Colds & FluMy Profile

    • Reply kristine October 6 at 1:20 pm

      Thank you Raia, I know how your friend feels it is exhausting sometimes 🙂 That pudding is surprisingly good! With no dairy/gluten/or white sugar, you never know, but this one is a keeper 😉

  • Reply Life Loving October 7 at 12:53 am

    I must admit I’ve never heard of your condition but good on you for carrying on regardless. Well done for putting it out there on your letter. People really should have more compassion of things they don’t understand. After all we should look out for one another. I hope things get easier for you. And thanks for sharing your yummy recipe.

    Sally @ Life Loving
    #WAYWOW

    • Reply kristine October 7 at 8:06 am

      Hi Sally! Yep, I never really knew much about any of the invisible illnesses until I got two of them. Nothing like a good diagnosis to send you plummeting into research! Thanks for stoppin’, have a wonderful day 😉

  • Reply Marla October 11 at 12:15 pm

    Hi Red,
    This look and sound so tasty, healthy and perfect for anytime of the day. Thanks for sharing on Real Food Fridays. Pinned & tweeted..
    Marla recently posted…Real Food Fridays #109 – Real Food Real HealthyMy Profile

    • Reply kristine October 11 at 4:52 pm

      Your welcome Marla! Have a terrific week! 😉

  • Reply Nikki Frank-Hamilton October 11 at 1:35 pm

    Kristine, thanks for the gorgeous fall recipe! Those of us with Pumpkin addictions thank you! And I agree with your tips about Invisible or Chronic Illness! I don’t want people to feel sorry for me, I want them to try to understand, to give empathy, to know I can’t do everything I used to and to cut me a bit of slack. And I hope that they never have to be in the position to feel the way we feel! Pinning, love the recipe, a lot!
    Nikki Frank-Hamilton recently posted…This Week, Week #41My Profile

    • Reply kristine October 11 at 4:59 pm

      Thanks Nikki! And enjoy that pumpkin recipe, it’s a great alternative for the GF or DF crowd. Lots of love! 😉

  • Reply Miz Helen October 11 at 4:47 pm

    Your Pumpkin Pudding looks so comforting, we will love it!
    I love the photo of your tea and journal, looks like what I do everyday.
    Hope you are having a great weekend and thanks so much for sharing with Full Plate Thursday.
    Come Back Soon!
    Miz Helen
    Miz Helen recently posted…Whats For Dinner Next Week 10-11-15My Profile

    • Reply kristine October 11 at 5:07 pm

      Hope you enjoy! Thanks again Miz Helen! 😉

  • Reply All that's Jas October 12 at 2:25 pm

    More and more people I know are suffering from FMS. My heart goes to all of you. Thanks for linking up with Thursday Favorite Things! Hope you’ll join us again this week.
    All that’s Jas recently posted…Italian Chicken with Artichoke SauceMy Profile

    • Reply kristine October 12 at 4:24 pm

      Thank you Jas! 🙂

  • Reply jenny October 13 at 6:13 am

    Fantastic letter, I need to send this to half my family that say those things about my sister. I can’t imagine how hard it is for her especially when so many don’t take the time to understand it. Thank you so much for linking up to Share With Me.#sharewithme
    jenny recently posted…Empowerment from the inside outMy Profile

    • Reply kristine October 13 at 6:32 am

      Thanks Jenny, hope your sister enjoys it, I know she’ll definitely relate to it. Have a wonderful day 😉

  • Reply Deborah Davis October 13 at 6:00 pm

    Hi Kristine,
    I understand what you are sharing about Fibromyalgia, I have a dear friend with Fibromyalgia and we talk regularly and my dad has a different neurological condition. I sincerely hope you are able to get the support and relief you need. You are in my heart. I could eat this delectabe dessert everyday I am so glad you shared this healthy and delectable Maple Kissed Pumpkin Pudding w/Marshmallow Whip Topping recipe with us at the Plant-Based Potluck Party Link Up. I’m pinning and sharing.
    Deborah Davis recently posted…Share Your Fab Finds at the Midweek Munchies Vegan Shopping Link Up #2My Profile

    • Reply kristine October 13 at 6:22 pm

      Thank you so much Deborah! What a sweet comment, I really appreciate it! Hope your dad is doing well 🙂

  • Reply Marla October 14 at 2:57 pm

    Hi Red,
    Just a note to let you know that I have chosen your post as one of my favorites for this weeks Real Food Fridays blog hop that goes live every Thursday @7pm EST. Thanks for being part of Real Food Friday and helping us to make this world a little healthier every week.
    Marla recently posted…“6 Plus Green Solutions for Pest Prevention in Your Home!”My Profile

    • Reply kristine October 14 at 4:07 pm

      Cool! Thanks Marla 🙂

  • Reply Real Food Fridays #110 – Truly Natural and Healthy October 15 at 3:57 pm

    […] Red From A Life Real Red — Maple Kissed Pumpkin Pudding w/Marshmallow Whip Topping G/F D/F Refined Sugar Free […]

  • Reply Lori Lane March 26 at 7:01 am

    Kristine, I don’t know how long you have had “the invisible disease” but I’m right there with you! I’m going on 21 years with my diagnosis and I’ve had so many doctors call it a “garbage can diagnosis” and it feels so good when I find that one doctor that believes me and validates me. I’m seeing a counselor right now that has been the best thing that has happened to me since I married my husband and had my children. She validates my feelings and then helps me understand them! So much of what you said in your letter is right on and I am going to save it so I can share it with those people that make ME want to smack them in the face! You said some things as I read this morning that resonated with me, that stirred my soul and I just wanted you to know that! I appreciate you and your willingness to stand up and SHOUT for those of us that just don’t feel like we have the energy or the courage…yet!!

    Warm Regards!

    • Reply kristine March 26 at 9:25 am

      Thank you so very much Lori! I’m glad you have found a good counselor, it really is important to have someone to talk to who not only can understand and not judge, but who is qualified to help. Thank you for starting my Saturday off on such an encouraging and unplifting note! Have a wonderful weekend 🙂

  • Reply Sandra Hill March 27 at 8:55 pm

    I read and fully understand your letter. I also have fibromyalgia. I was diagnosed with it about ten years ago. Long before there was really anything available about it. The best way to describe it for me is that my “everything” hurts. Sometimes my skin hurts so badly I can’t stand to be touched. I am always tired, I have gained weight, and I also have random stabbing pains in various parts of the body. Sometimes I think maybe its not really real. But then I remember what I was like before this thing attacked me and I know it is real. I used to be energetic, skinny, vibrant. Now I do well just to get to work and get things done around the house. Keep spreading the word. I do. People are just now beginning to learn that we aren’t just looking for attention or sympathy. To steal a phrase: The struggle is real.

    • Reply kristine March 27 at 11:04 pm

      Thank you for this Sandra. I know exactly what you mean when you say sometimes you think it might not be real. As crazy as it sounds, I’ve had those thoughts too. I think, “Maybe it’s because I’m overweight, that I have pain” “Maybe it’s because I’m 49”, all those thoughts that dismiss the legitimacy and reality of the disease. Then, just like you, I remember what I used to feel, and then I too know it’s real. The struggle is real, and only those of us that deal with this day in and day out really know what it’s like. Hang in there my sister! Thank you again for taking the time to leave a comment like this 🙂

  • Reply Catherine April 18 at 5:34 am

    Good morning,

    I hope today brings a little less pain than yesterday. I stumbled across your blog wandering my way through Pinterest and love it! You have a wonderful attitude! Fibro has taught me many lessons in humility as I went from a woman with chronic back/neck pain who worked a full time job that I took a lot
    Of pride in being excellent at(not to mention my often second job as waitress/bartender) & supported her 3 children on her own to a completely dependent & home bound woman who literally doubled her body weight between the medication side effect ,a suddenly underactive thyroid & this sedentary lifestyle I now have. One of my largest challenges early on was the people who surrounded me. My boss told me that it was in my head and because I was so angry. (At the time I was, I could see the writing on the wall, was dealing with 3 uncooperative teenagers, in constant pain, not to mention dealing with an evil ex-husband & a boss who is telling me it’s all in my head & im just too angry. Lol). Everyone had their own opinion on what I should do and some even got nasty with me when I didn’t follow their advice (example -gluton free diet. It worked for their mom. I should stop being lazy and just do it. Ahem-I had the blood test. I have no gluton sensitivities at all. Why am I going to change everything about my diet for a problem I don’t have…oh I’m sorry because they said so. Lol)

    My most challenging lesson I learned had to do with someone who was one of my “best” friends. I was a maid of honor in her wedding a week after being forced to leave my job due to my illness and actually had people tell me to suck it up when my pain started showing on my face because they didn’t want me to “ruin”
    Her big day. I should never had said yes. Turns out I was her friend but she was not mine. Unless a problem could be fixed with a shot of tequila, she was never going to be there for me. She didn’t come to see me in over 2 years. I was invited to her bbq’s etc but when I pulled myself together to go I was told that I was making it look like I was worse than what I am and she remembers me jumping off a dock into a lake just 2 years ago so I can’t possibly have this. She insisted that my doctor
    Had misdiagnosed me because I was making things “seem” worse than what they were , she knew all this to be true because she knows a woman with Fibro who is older than I and she is nowhere as bad as I am making it seem but she was only saying this out of “love”. I educated her first. Or at least tried to. Turns out it wasn’t a lack of education, she just didn’t want to admit she was wrong. In fact to this day word still gets back to me that when she runs into people who are still in my life, she is still telling people that I am exaggerating and not trying hard enough. She did help to teach me something very important. In life, some people are worth our pain (insert time if u aren’t Ill) and some are simply not. I slowly backed out of her life. She always loved drama and I didn’t need it. I was doing what was best for me and my health, period. I just stopped calling her and even went so far as to start a new Facebook page only inviting my true friends & family. Eventually she got the hint.

    I am very careful who I allow in my life now. I do my best to surround myself with positive people. I’ve learned that whether you are ill or not, it’s best to surround yourself with people that you admire & that are kind. People who have attributes that you would love to be more like yourself. Life is so much better with a couple of amazing people in your life who I will always be there for and they will always be there for me. People that are worth my pain & understand if I’m not up to it. I’ll rather keep that last spoon of mine to hug my children rather than smacking those that just don’t want to learn the truth. It’s so much more satisfying 😉

    Have a wonderful day! Ty so much for sharing your story! As you know, knowing we aren’t alone makes a world of difference.

    Catherine

    • Reply kristine April 18 at 6:31 am

      Wow. I’m reading your comment with an incredulous look on my face, wish you could see it! 😉 All I can say is wow. People can be unbelievably insensitive and ignorant and just PLAIN JERKS! After reading all you have endured, I’d say YOU are the one with the great attitude! 🙂 Good for you for making the difficult decision and steps it took to do what is right for your health and family! Hang in there and keep making good choices! Fight on Fibro-Warrior ♥

  • Reply Catherine Williams September 20 at 4:18 pm

    What a wonderful letter Kristine . My cousins daughter was struck down with a mystery illness several years ago and was eventually diagnosed with Fibromialgia She had always been fit and active and worked hard from the time she left school ,it is amazing how quickly people forget these things and label someone as workshy or lazy. They don’t seem to notice that once bright bubbly fun loving person no longer has a social life, because of the battle they are fighting with their own body,that they want to work but can’t,or that even if they could afford to , taking even a short holiday is too much hassle. When the pain is so excruciating the Dr put her on morphine i wish those doubters could spend just one day feeling her pain then maybe they would understand. I have a board on Pinterest “Chronic illness” i started it because i wanted to learn more about Fibromialgia so that i can hopefully explain to others that it is not a figment of sufferers imaginations.

    • Reply kristine September 21 at 10:21 am

      Thank you very much Catherine 🙂 I hope you cousin’s daughter is finding some relief. It can be such a debilitating disease, and people really know little to nothing about it. Or worse, there’s that stigma attached to it that it’s ‘not real’. Thank you so much for participating in bringing awareness to the public with your board. Every bit helps ♥

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