My Secret

Not so much an inspirational post, just some of my thoughts that I think you might relate to. Love and prayers to you!

Having chronic fatigue syndrome and fibromyalgia has been a very private journey for me. Of course, my family and close friends know of my illness, but for the most part a large portion of the people I know and interact with on a weekly basis have no idea. (Well, at least until I started this blog! ) I choose it to be this way. Writing this blog has been the most vulnerable I have been about it EVER. I really don’t mind opening up to complete strangers about my personal journey because I know that the majority of people reading this know exactly what I am talking about and totally understand! It’s comforting to know that there is a community of people who will accept my illness without any judgement. That’s part of the reason I started this blog. I know there are others like me, who suffer, but also have their faith to help sustain them through the hard times. I wanted a way to find those people and share in the journey together.

So, I often wonder why I feel so secretive about this fibro/cfs? I mean if I had cancer or multiple sclerosis or something like that, I don’t think I would have any trouble sharing that with people. So, I’ve taken the time to evaluate my feelings and here are my thoughts. I hope you can relate.

I don’t like being vulnerable. Who does really? I started my illness with doctors telling me that it was basically all in my head. That I had depression. That my symptoms were not real. Perhaps they were doing all that they knew to do, but they were wrong. Hearing that what you experience is perhaps a facet of your imagination is very hurtful. The symptoms are so real and can be very debilitating. How could I have made that up in my head? Little was known of fibromyalgia and cfs back in 1996 and although they’ve made huge strides in the medical community, there still seems to be a stigma among physicians about these syndromes. Terribly misunderstood. I still live in fear of the judgement, even today. It’s hurtful.

I have a wonderfully supportive family. I feel open enough to tell them anything and everything about my illness without any fear of judgement. Not that there is always understanding, but there is always compassion. I choose not to tell friends/acquaintances of my illness for many reasons, but a big one is still the fear of judgement. Perhaps, not to my face, but in their thoughts. It leaves me open to misunderstanding and hurt feelings. So, I have kept my journey private, I guess to protect myself. Anyone else live that way?

Another reason, is that this syndrome is so unpredictable. It changes daily, sometimes hourly, I find it hard to keep everyone updated. I mentioned this in one of my earliest blogs Compassion. I don’t expect other people, even those close to me, to be able to keep up with which symptoms pop up on which days. How often and how severe. I can hardly keep up the ever changing status of my illness, I certainly don’t expect other people to. And I don’t expect them to understand it either. I’ve mentioned this before, but if I am feeling bad enough that I can’t get off the couch then I let husband and kids know that and ask for some help during those times. If I were to dump the symptom list on them at any given time it might go something like this:

Well, my head feels heavy, the muscles in my neck feel like guitar strings, my shoulders are burning and feel like someone has beaten me with a club, my hips and glutes hurt so bad that sitting or lying down is very uncomfortable, but all I want to do is lie down, my joints ache like I have the flu, the fatigue is so bad that I feel like I need a blood transfusion, I can’t think straight, I’m nauseous and have no appetite, I feel like I might pass out, my arms tingle and are slightly numb, and I’m a little dizzy. Did you get all that? Because if you didn’t get it all, I am sure I will feel like this again tomorrow and could go over it all again.

Sound familiar? Don’t get me wrong, it is a wonderful thing to educate people and to communicate with loved ones. But in my case, after 16 years, it just gets old. I just want them to know that I don’t feel well today and hopefully that will change by tomorrow. Love me anyway and help me if you can.

A few people have found out about my illness from this blog or just through conversation and the most common response is, “ I had no idea.” Well, I guess I hide it well. The point is, if I am feeling bad, I stay home. You won’t see me. And if I am out and about and I feel bad, I usually will fake it until I can get home and in the bed. That’s just the way I prefer to roll. It is somewhat of a survival mechanism for me. Can anyone relate to this? or am I the only one who chooses this way of thinking? I am blessed that I don’t have to report to an employer everyday.  I suppose I couldn’t keep much of a secret while attempting to work full time. I don’t even know how that would be possible. And I know some of you reading this are doing just that. Difficult.

Some people choose to make it their mission to create Fibromyalgia awareness. I get this and I don’t disagree with it, but I am not there yet. People need to be educated on these syndromes. To create awareness, if only to create more compassion and understanding. But all of that takes vulnerability and trust. Many of us, including myself, don’t have the energy for that kind of vulnerability. I applaud those who do. I feel like I am doing my part by writing to those of you who understand. Creating encouragement. And in that process, I am being vulnerable. That is a step for me. I am happy to share my journey with others who have it. To be vulnerable to help others be comforted and feel less lonely. This has been a mission of sorts. And it has helped tremendously in my understanding of the workings of these syndromes and my emotional response to it. No secrets here! 🙂 Thanks for coming along for the ride and listening to me!

Love and Blessings to all of you,
Ann

Let me know your thoughts about the secrecy part of fibro.  Do you feel free to share your illness with the people in your life?  or do you feel judged? Do you feel like it is your responsibility to help educate others about fibromyalgia or cfs? or do you just keep quiet, like me?  I would love to know!

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16 thoughts on “My Secret

  1. Dear Ann, I love what you wrote. Yes, I keep it quiet, too for the most part but once I became aware of your blog, I started telling my friends that I have cfs/fibro., too. I feel like your blog really validated things for me so thank you so very much. It made me feel that I am not alone in this.
    And, I agree on the unpredictability of the symptoms & how if I have a flare up on a day when something really important is happening, I really do try to “fake it” through the day until I can get home and lie down. Again, I want to thank you for your words and encourage you that you are making a difference in others’ lives! Fondly, Shelley

    • Shelley, I always love when you leave a comment. Thank you for your words of kindness. I am glad to hear that you have started sharing your fibro journey with friends. And I hope that it is being well received. Oh, to feel validated is a wonderful thing, isn’t it? Knowing that you are not alone in your journey. To know that there are others that feel the pain and emotions that you do. I am so glad that you have found that here on the blog. We are all in this together learning and growing with each other. You encourage me with your honesty. Thank you, Shelley!

  2. Hi Ann, I love this one. Yes to both questions. This is exactly what I would have written (and maybe even have). It is hard to just “keep on keeping on” when with other people, though I find the distraction of being in public helps me forget about it at least a little so I don’t feel so much like I am faking it or not being real to people. But after so many years I think we become called to share our struggles in order to help others – and look how well you’ve done that. You make a huge difference in my life and that of so many. I say, share as you are able and feel led and don’t worry about it the rest of the time. Love and blessings and complete understanding to you,
    Kathy

    • Thank you, Kathy! I agree that sometimes the distraction of being in public can make things seem less severe, but it’s always hard to judge when that may backfire!!! : ) LOL I love your encouraging words. I take them to heart and so appreciate you taking the time to share. Thank you for answering the call to also minister to others who are hurting. Love and support go such a long way with this illness. Blessings to you!!!

  3. Dear Ann,

    This post topic is so amazingly timely for me right now. I find it very comforting to know that someone else feels like they’ve needed to keep their fibro a secret too. I don’t think I would have come out and said that’s what I was trying to do, for the roughly two years I kept it up, but it was.

    I had only told close family and very few choice friends about my health problems, and very recently, after “slip-ups” and people noticing weird things (like being on facebook very late at night because of all the sleep problems, not jumping on the idea of being in the church choir because many Sundays I can’t even make it out of bed to get ready, etc.) I decided that I needed to make an announcement of sorts for those who really cared to read it. So I very carefully wrote a rather lengthy note on facebook explaining what’s been going on with my health for the past two years, my reasoning being that people would quit asking what I took as upsetting questions if they knew what was really going on. I guess that could sound kind of drastic, but it was done after much consideration, and I am very glad that I did it and felt a lot better about the issue once I posted it.

    I still don’t come out and truthfully answer the “How are you?” question every day, of course, because people don’t have time for that ;). And I don’t go around talking about my problems to everyone I talk to. Nor did it clear up the problem completely by any means. But I do feel less guilty for saying no to things because a handful of the people I have to say no to now know why, even if they don’t “get it.” I got only a few comments from people about my announcement, but they were all positive.

    Your post has me thinking about why in the world I too felt like it needed to be a secret for that long. And, as I tried to wrap my brain around the matter for my own announcement, I think for me, it was because when I was first diagnosed, I wanted to talk to people who could empathize, not sympathize and pity. So I really only talked about it with those few I found who were similarly suffering. It just took two years for enough people to notice things about me that just saying “Oh, I have some health problems” wouldn’t really help.

    So with all that said, I just wanted to say that while you found your reasoning was vulnerability, I think mine is that I desperately want people to still see me as a whole person, even though fibro makes me feel far less. I’m now hoping that they continue to see me as a “whole person,” and that even though they can’t know how I feel, they’ll know why I am the way I am and do the things I do.

    Thanks so much for this post in particular. It’s amazing how your topics tend to fall along the same wavelength as my thoughts and struggles.
    Kacie

    • Kacie,

      Thank you so much for sharing your story. What a journey of growth for you! I think you handled the situation perfectly. And although our reasons were different, I completely understand everything you described. Fibro certainly defines many parts of how we live, but it doesn’t change who we are inside. I love how you want people to see the real you!

      The “Oh, I have some health problems” is a common phrase in my vocabulary too! : ) Most of the time it works. But I also think it just makes people very curious!!! Secrets!! And the “how are you?’ question. Well…I try to be truthful in about three words without drawing attention to myself. That’s always an awkward question b/c do people really want to know the answer? How much time do you have? Here in the south, that phrase is uttered hundreds of times a day! LOL

      I really appreciate you taking the time to share your thoughts with me and my readers. I love when we can have conversations and learn and grow from one another. And when readers share things, it encourages me so much! I never know when a topic is going to connect with someone and I just love it when it works out that way.

      Thanks for reading, Kacie!
      Blessings,
      Ann

  4. Thanking God for you! And for sharing. I have.experienced all that you have mentioned. And maybe more! Right now … I am on the couch level almost day and night…with not being able to sleep…many nights. I really felt like giving up until I read your posting. I felt like I was the only one on earth going through this. Please advise of any thing you take that may be helpful. Psalm 91 ~. Dianne

    • Hi Dianne,
      I am so sorry to hear that you are in the stuck on the couch mode. It can be so lonely, frustrating, and discouraging. I would say that the greatest improvements for me were made when I made sleeping a priority. I know it is so hard when there is night after night of insomnia. It feels so helpless. But my number one recommendation to any of you desperate for answers is to start with getting good sleep. It took about a year to a year and a half of good quality sleep for me to start feeling better. And be able to function. There are many different ways to approach it and I’m not sure which methods you have tried, but if you want to send me a private email restoringmysoul@gmail.com – maybe we can start a dialogue about your personal situation. Also, you can read my post on restful sleep here: https://restoringmysoul.wordpress.com/2011/12/27/restful-sleep/

      Hang in there! Bad days are awful, but there are bound to be some good days in your future. Keep trusting – knowing that God has you in the palm of His hand! Prayers for you tonight, Dianne!

      Ann : )

  5. I agree with not being totally honest when people ask how I am. I have found that most people don’t really want to know. I have tto work nights and take care of my husband during the day/evenings because he has a rare progressive disease. There are some days I just want someone to take care of everything but it doesn’t happen so I just do the best I can. I also take care of the farm and a teenager. Not only is the pain bad at times but yesterday was a really bad ‘fibro fog’ day too which most people don’t understand. Thanks for your blog which does provide some much needed encouragement and support. Penny

    • Oh, Penny, your situation sounds difficult. Doesn’t sound like you have any time to rest and take care of yourself!!! You are a hero – living with fibro and taking care of an ill spouse. I am sorry for the journey you are on. It’s hard!!! Thank you for your honesty and sharing your struggles. At least we can be here for one another. Thanks for reading!

      Hugs and Blessings,
      Ann

  6. Dear Ann
    Yes, I think we all walk this secrecy road with Fm/CFS, at least for a while. Thanks to your honesty and openness, you have inspired me so much to be open about this difficult road we are travelling. I first started following your blog on my cellphone, but because my eyesight became really bad from the Fm/CFS, I used my savings to buy an iPad and have now even started my own blog where I hope to be just as open and honest and to encourage others the way you have done for so many of us. The more I read of your and others’ struggles, the more I become encouraged to share mine as well and I am sure we all have been hurt very much by others even when it was unintentional. Thank you for blog where we can just be ourselves and know we are understood.

    Blessings

    • I love this story! Sharing your thoughts about fibro/cfs can be so healing emotionally and I am sure you will encourage others along the way. You’ve answered the call to blog! YAY! I am blessed to be a part of your journey. Thank you for your kind words, Mia!

      Ann

  7. Haha your description of how you feel on some days made me laugh! I totally understand that. With my husband or friends, I might give them
    the worst of my symptoms, but certainly not ALL of them on a given day! Thanks for sharing. I can really relate to your thoughts on this.

  8. Thank you for sharing… On the hard road also! In the heat of the battle!!! And, yes you help us know we are not alone. We have One Who walked before us….He promised to never leave us not forsake us. Even though, we feel …God doesn’t hear. It is brought to my rememberance … Jesus cry from the.cross. ~. Dianne. Praying for one another.

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