A Scolded Child.

I think I am devastated. Well, that is a bit over dramatic. Maybe I am pissed-off? No. Frustrated? Maybe. I think I’m just sad, tired and done. I’m really not surprised. I’m really not even angry. I feel a bit like a scolded child, but this too shall pass … so what happened?

I was asked to stop discussing fibromyalgia related topics in certain company. I was told it was just ‘too much’. I was stunned! I was shocked! What had I done wrong? But maybe for them, it was, just too much. Too overwhelming, seemingly, self-centered.

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I wanted a certain life but was given another. Although I have had fibromyalgia for 20 years, I constantly research the latest information. I share what I learn about this disease. I support others with chronic illnesses and try to offer alternative coping skills to those who are having a hard time. The part that baffles me is that I can’t seem to reach certain people in my life. I can’t get them to understand what I want them to know. I know how difficult it is to explain this disease and that understanding it is even harder but I believed I was advocating for awareness and my message was being heard. I thought I was making headway, but to my surprise, I was only creating a much bigger divide.

I held a mirror up to my face the other day and asked myself this question, “Why were you asked to stop talking about fibromyalgia?” (I must mention, as I looked at myself in that mirror, all I saw was a confused lady looking back at me.) I spent a few days reviewing my conversations over the last few months. Although I was in a teaching and sharing mode, releasing a book that I had co-written, I believe I may have talked the topic of fibromyalgia to death! I believe I probably was just ‘too much’. What I thought would be helpful, inspiring, and interesting was obviously not.

The bottom line is this, I don’t get to choose when it’s ‘too much’ for me to deal with, I have to deal with it every single damn day. I have a disease. But others in my life do get to choose. I can deliver information but I can not control how others think, react, or receive information. I have learned a valuable lesson. I will always be aware of this. I will put parameters in place. I need to revisit the art of conversation, (My ill-tempered companion.) Talking about my disease is not always a welcomed topic. That is the beauty of a life without chronic illness, you get to choose whether to hear about an illness or not. You get to say, stop. I will respect that.

IMG_3180~Kim

 

16 thoughts on “A Scolded Child.

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  1. In my opinion, you’re not the one who deserves to be scolded. Those who refuse to acknowledge the severity of an illness just because they haven’t experienced it might deserve a scolding, though. But that probably wouldn’t do much good, either. Some people are naturally empathetic, others are intermittently so, and still others seem incapable of compassion for those whose struggles they don’t understand. Don’t worry about people who fall into the latter category; think of them as people who suffer from something that you clearly do not: a compassion deficiency.

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  2. How dare that person say that to you! You have done nothing wrong. Too bad if they’re fed up listening to you promoting and educating. You have to put up with the pain, fatigue and all the other symptoms, so they can put up with you talking about it. If they don’t want to listen then they don’t deserve your friendship. Why should you change because one person made this selfish comment?

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    1. Hi Tricia. I guess I am taking into consideration this comes from a ‘group’ of my so-called inner circle. And those people who came forward will now no longer be privy to my ‘real’ life. I was extremely shocked but I now know who really wants to hear about what I deal with and who does not. And I will ‘let them be’… ignorance can be their bliss. I will not waste my time or energy anymore… It did hurt, but they will never know. They don’t get to know how I am feeling anymore. So thanks for having my back and for sharing in my blog. I appreciate YOU! ~Kim

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  3. I have had this same experience just in the last few days with 2 of the most important people in my life and in my family. I really believed these two people were with me 100 percent. They were designated as my caregivers should my situation deteriorate. I’m utterly devastated!

    I have hand surgery scheduled in 2 days. I believe I can get through the recovery by myself. I’m setting up foods, meds, bedroom etc. today. 4 days later it’s a 5 hr. round trip drive to pre-op for my second foot surgery. I have scheduled a driver. That surgical recovery I can’t handle on my own. The other foot required opioids and a lot of personal care for 2 weeks. Of course I flared like an exploding sun! 30 days non-weight bearing when a scooter or crutches can’t be used. Argh!!! My other hand also requires surgery. It must happen before 31 December when I am forced to change my insurance.

    The weight of my anger, hurt and disappointment is suffocating. Fortunately, I have not included these family members in my advanced health directive. I’ve contacted my attorney to finalize my will. These are life lessons I never wanted but here I am. I’ve taken care of myself and others for the greater part of my adult life. It is a heartbreaking revelation to have lived this long, cared for so many and come to this understanding. I’m in new territory now and God only knows where I go from here. After my tears I will pick myself up and continue to live my life. Wiser I hope in the understanding that the only people who really care to hear and learn about my chronic illness challenges are others like me. I find this a sad commentary.

    Liked by 1 person

    1. Shelley! I just want to hop on a plane and come take care of you! Get you through these surgeries and this awful experience you have just had! I am so very sorry. My heart is breaking for you. I just do not understand how completely ignorant some people can be… COMPLETE IGNORANCE. And they seem to ramble on through life doing as they please. It is beyond my comprehension. You email me if there is anything I can do, seriously, even just to talk. I am here for you. ~Kim

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  4. I watched a webinar last night that was very true and this is the message that was shared: No matter what circumstances arise, how we ‘feel’ is determined not by the circumstance but how we think about it – what our thoughts are. We control our thoughts and can change how we feel about what happens by changing how we think. To read your words you feel like a weight has been lifted show how strong you are and that you’ve changed how you feel about the message that was delivered to you. Well done x

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  5. Sad to hear that dear Kim!
    With your post, I remembered another incident with a blogger friend here in Greece. She has a family company that makes furniture and decoration for yachts and boats. Well, this means that DIY and deco are her niches and her blog is very successful in these topics and she has many followers. Before two years I think a very famous Greek interior designer sent her an email that wrote how she dares to post articles about decoration and that she must stop blogging and many other awful things about her style and her posts… She was upset, she was angry, she thought even to stop blogging because she is a very sweet and thoughtful person. But, she is also very talented and decoration is her passion so she kept going … hopefully!
    I believe you should continue to write and share your truths with sincerity and passion. The opinions are acceptable to hear and be judged as they judge us, but we never know what motives and aims hide under them… So, let it go and stay true to Kim… ♥♥♥

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