The Loneliness, Isolation, Distortion And Accusations Of Fibromyalgia

Nearly a decade ago, while my husband and I were engaged, he was sent an e mail saying I would be costly and run up endless dollars of Doctors bills because of all my health challenges. He was warned  I was an ‘expensive undertaking’ because I always had appointments and was on a number of drugs. Of course my drugs are really medications prescribed to me by my various Doctors of Medicine. They are needed for my body to properly function and stay as healthy and pain free as possible. Would the author of the e-mail rather have me wither away and die? Perhaps. However, I have no intention of going anywhere and the ‘who and reason’ behind that very hateful e-mail are not important. As a writer with the highest integrity, it is not relevant to say who wrote my husband that e-mail or how I knew the person who wrote it. Who it was is of no importance….. how it relates to this post is what matters.

My husband loves me. I sometimes do not understand why. I am costly. I am high maintenance…. not in material  possessions, still, in Doctors bills, scans, surgeries both past and pending and medications. My husband entered in, fully aware. What the person that wrote my husband that e-mail did not step ‘outside the box’ and realize was, the vows say, ‘in sickness and in health’

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Fast forward to just a few weeks ago. Someone who is now, sadly, a former friend, insisted that one of my examples from my last post…..of people that tell me they have pain but have no choice but to  ‘push through it’….. was referring to her? Excuse me? I assured over and over that  this simply was not the case. I let her know I had twenty years of experience to draw on and of all the people I have dealt with over twenty years, she did not once enter my mind. A lot of other things were said….. things I will not mention here because as I told her, I am a writer with probity. I am also a person with integrity.  I asked for an example but she refused until finally, upon several requests,  she pointed to a vague paragraph (above mentioned). I tried and tried to explain to her, even swearing to the Lord above that did not once creep into my mind (really, why did it have to be about her?…. it simply was not ). I crossed a point where it did not matter if she knew the ‘truth’ or not. I told her still, she was simply not the person referenced and in fact there was not one certain person in mind but rather a number of people. She was not one of them. It was a lost cause and honestly I think a cop out.  The bottom line is this: for us….. people with fibro and chronic pain…… friends either stick by our side through thick and thin (like our wedding vows in sickness and in health), or they scatter like mice on a sinking ship. She has a lot of stress in her life and I understand and respect that, but she stated that the sadness of the subject matter was more than she could take. I do not accept that. Again….. if a friend is to get, God forbid, a terrible disease such as cancer, is it just too much sadness? Unfortunately, in many cases, yes. I have seen this happen too. I have seen people left high and dry by friends and even family with every condition or disease ranging from fibromyalgia to something as serious as cancer. When I was twelve years old, I recall a young man who was a neighbor of mine getting terminal cancer. His parents lived across the street from me and his baby sister and I were good friends. He moved back in with his parents his last few months on earth. He was only in his early twenties. As sad as this is, his wife left him when she found out he was dying. Some people cannot take watching others hurt. While I certainly try to stay as upbeat, informative and as much of a crusader as possible, the truth is not always positive and happy. The truth, at times, hurts. The truth, at times, is painful, soul-crushing and lonely. I am here to try to maintain a balance……. keep things upbeat but also let my sisters and brothers in pain know: it is OK to be down and feel alone when you hurt twenty four hours a day, seven days a week. My sisters and brothers in pain: you are not alone!

Fibromyalgia is a lonely condition. There is a group on Facebook Called, “Stop Whining Fibromyalgia is A Joke”…. I hate even giving it space here, but please report this group as often as you can as “Should not be on Facebook” followed by, “Hate speech against a group with a disability”. If you need to, join, “Close Down Stop Whining Fibromyalgia Is A Joke”  on Facebook……. which has more followers than the troll page it is trying to get stopped. Free speech is one thing; hate speech is another. For that is exactly what it is. Do you want to know what the owner really is? He is a hypo-therapist trying to get clients! He is going to hypnotize that pain away. And do not try and reason with the man or he will call you ‘dumb ass’ and ‘moron’ and block you ….. for a day. So mature! Would really trust him putting me in an altered state of consciousness? I don’t think so! My husband Paul…. who is extremely refined and restrained tried writing a very mature and educated post. The post got deleted and Paul got ‘banned’. He simply ‘questioned’ the way he approached getting business and ‘poof’ he was gone.  There is no reasoning with hateful trolls. Anyone that would be so cruel does not deserve any sort of credibility. I have no problem with anyone trying to promote a business. Be that as it may, why would someone try and and promote it from such a hateful stance? Imagine if you inserted “Stop Whining Cancer is a Joke” or  “Stop Whining Autism is a Joke”. Do I have your attention? I hope so because both of those issues fall very close to my heart and I would take great issue if that same person left fibro out of it and did the same thing with either one of those subjects. Somehow,  because it is fibromyalgia, it gets swept under the rug. We are the ‘negative’ ones. No, we are warriors. Yet so many of us with this condition are left lonely…. feeling as if ‘we have done something wrong‘. Some of the bravest and strongest people I know are people with chronic pain. I have a friend in Canada that I will call “E”. “E” is amazing! She has made hero in my book…. a very difficult thing to achieve. “E” is taking on the Canadian Government! Because I respect her privacy, I will not elaborate, but I just have to say she is beautiful, smart, driven and one of the strongest people I know. She is not a whiner or a ‘negative nellie’ in any way, shape or form! Chronic pain survivors are strong…. not weak and ‘sad’.

My friends with fibromyalgia, you have done nothing wrong! Remember, depression is one of the most common (of many) side-effects of fibro so already you have one thing stacked against you. Also bear in mind, approximately 5 million Americans ages 18 and older have this condition so as alone as we can feel, we are not alone! Reach out to others. I am a member of various groups via Facebook and, as I have mentioned in the past, have made numerous friends all over the world! I would not trade these friendships and the bonds I have formed for anything. I cannot count the times I have had someone to ‘catch me’ at 2 AM when I am unable to sleep because of pain.  As sad as this sounds, people that do not have fibro or do not have a loved one with fibro in many cases maintain the attitude of that man who runs that Facebook page, ‘you hurt, so just shut up and live with it!’. I have said this many times: Fibromyalgia is 50% pain and 50% so much more. It is not just pain. If it were just pain, I think I could almost deal with it! However, I am not saying people that do not have fibro or have someone close to them with chronic pain are incapable of being sensitive to the walk we walk. I have met many sympathetic to our plight and many who have stopped to talk to me for several minutes to soak in as much information as they can. “What is that? I have heard of that?” to be followed by, “You poor thing” or “Bless your heart” to which I reply, “Thank you! But don’t feel bad for me. I have accepted this. Now I just try to educate and raise awareness. I also hold out hope for a cure or a really good treatment.”

I cannot let this go by without mentioning a few who have been with me through the long run. “N” who I would classify as my best girl friend. We are polar opposite when it comes to politics, but, we respect each others rights to have our own opinions. Isn’t that why we have a Constitution and live in the Land of the Free? We have these rights so we can each have an opinion. “N” and I respect this about each other and that is why our friendship works so beautifully. The same can be said for “S” a friend literally since age three and separated by 2,500 miles. We have many beliefs (such as religion) that are spot on, but politically are polar opposite. We have always steered clear of this subject. Both of these friends have stood by my side……. in sickness, health and everything in between. That is the foundation for which a real, true friendship is built on. If it is ‘too sad’  then there was never a friendship at all. If I am too costly because of my health as was stated in the e mails to my husband a decade ago, why not just execute me? If sick people are considered, to this person, to be such a burden, well maybe movies about getting rid of  people that are no longer considered ‘valuable’ or are over a certain age are a little too close to home. Two examples would be “Logans Run”  http://en.wikipedia.org/wiki/Logan%27s_Run and “Soylent Green” http://en.wikipedia.org/wiki/Soylent_Green

The bottom line is simple. I am who I am. I am far from perfect but I have a good heart. I am passionate about writing and I am passionate about fibromyalgia awareness. I make good use of this hand I have been dealt.  This beast has robbed me of my quality of life. I am going to do the best I can do to be as productive as I can within the very limited confines that my body allows. Rather than zoning out in the wasteland of daytime TV, I choose to keep my mind…… muddled in brain-fog…… as active as possible. I choose to educate, inform and comfort. My goal is not to be a ‘downer’ or start a petty argument about something that someone insists is ‘about them’ when it just simply is not the case. Not to burst anyone’s proverbial bubble, but the people I am concerned with when I write about life with fibromyalgia are people with fibromyalgia and their loved ones. I am also here to educated anyone who in simply interested in this never-ending, never-ceasing cycle of pain, emotional upheaval and the overall assault it plays on ones body. I know I am helping people. That is what is important. For the people that insist life has to be a constant ‘positive party‘, I make no apologies, because I am writing about the reality that is fibromyalgia.  Additionally, life is not always ‘happy, happy!‘. You do not have to like my writing. I will, on the other hand, not have my integrity questioned. My integrity is front and center with every word I type. Most of all, my Lord and Savior Jesus Christ is with me every step of the way. For that, I am truly blessed. Until next time, K.

A perfect song…. for all the lonely people….. may your days be full of comfort ,friendship and most of all……unconditional acceptance!

http://www.youtube.com/watch?v=k9Itt02QOO0

3 thoughts on “The Loneliness, Isolation, Distortion And Accusations Of Fibromyalgia

  1. I am sitting alone ,again , this evening and I decided to google “why are people with Fibromyalgia so lonely? ” I had many sites to choose to go on but God guided me towards yours . I feel so blessed that he did. When I was diagnosed your analogy of mice running from a sinking ship captured just what happened. I was in the middle of a divorce from a very emotionally abusive man , which my family supported ( 4 siblings , and my mother , father deceits yrs prior too ) when diagnosed . Before my diagnosis I was put on many anti depressants , mood stabilizers and pain meds This was acceptable to all. depression was okay and so was back pain. When I got the Fibro diagnosis after 5 yrs of not knowing truly what was going on in my body and mind everyone just disappeared including my best friend of over 40 yrs. Our mothers were best friends and had us 2 days apart in the same hospital. I would have told you what a crazy notion that would be if I got sick I would lose my family and best friend , but I did and have. The tears are starting to run down my cheeks as I am typing this. I did nothing wrong I just got sick with something nobody really understood or cared too. My mother has hung in there with me , but can not understand why I am not myself anymore . She re- married soon after my diagnosis and I understand my relationship would probably change . I never dreamed how dramatically. She use to be so proud of me and my independence in life. Now that I am not the same woman I feel her disappointment in me. Of course because we ‘LOOK” fine. Sometimes I just want God to take me , just to feel loved again. I have been to he– and back . They all got together at one point invited me over and tried to have an intervention so I would check into a psychiatric hospital , I refused , knowing that was not what I needed. I just needed their love and acceptance of the new person I had become. Which in my mind was not that bad of a thing . At first I did do the TV gig ….then I wised up joined support groups and educated myself about my illness. I wish I had a loving husband , so I would nit have to burden my three loving children who actually try and understand Fibromyalgia. I am relying on my savior to see me through the near future . When I divorced he was extremely evil and left me with very little. What I did get I have expended on my children’s education and a small condo to reside in. One of my children is a Full Bright Scholar : ) very proud of her ! The other two are so accomplished in the own right . My upcoming dilemma is no money . Being an Interior Decorator I just tried to open a furniture consignment shop . I love furniture and decortaing . I gathere 300 sq ft of furniture for staging purposes for the last 8 months and then located a space to rent in an affluent area . The landlord gave me the keys and said we would sign a lease come Dec1. I could not have been happier !! I was going to have a life again ! I thought it wise to check with the town , after a month of renovations , to see I had all my eggs in a row. Well…….boy was my bubble popped . according to by laws thsi business coud nit be in town since there had nevr been one in town before. in order for me to proceed I would have to submit a request to the Board of Appeals . A meeting is held every first Tuesday of the next given month . ( Dec 6th 2013) I spoke with the ladlord and let hin know what had transpired. What a naive little girl I can be at times . He was not surprised and offered no help in obtaining it . Actually he yelled at me from his second home in Florida where he was residing last week. My heart just broke ! I had found a purpose I believed I could keep up with do to my love for decorating and helping people love their environment. Its so important to feel comfortable with your surroundings it truly sets the tone of your home. Its your sanctuary . My son was partnering with me and we were so hopeful. its only been 7 days since this all happened , back to the point I have no one to tell I am not up to a battle with the town . The gentleman ( questionable) who told me the by laws unfortunately does not like the landlord I was going to rent from and was delighting in the fact he would not have a new tenant. Its so lonely and I am so confused !! I want to thank you for what you are doing . It has helped me through the night and I am not embarrassed to tell you a perfect stranger how frightened I am , because I know you understand . I am going to keep my faith and pray I find a way to stay a float . My best to you and yours !

    • Susan, thank you so much. First, I write this for the exact reason you found it…. to help others, first and foremost. That is the most important goal. I also hope to educate ‘well’ people, like those you mentioned, in our lives that just do not get it. We aren’t ‘strong enough’ or we just need to ‘push through’. Ask my husband… who is a SAINT… how I could have possibly pushed through last night when my gut was in misery and I was literally devoid of ALL energy. I am so blessed, beyond words, to have a husband that would move Heaven and earth to help me in any way he can.
      I am so sorry people in your life do not ‘get it’. While no one without fibro really can… I I cannot truly understand what it is like to have diabetes… but many of my loved ones have had it, my Dad passed from it and I worked in the field for 3 years, so I can certainly empathize. It is the same with fibro, I just wish people would try to understand.
      I will truly keep you in my thoughts and most important, my prayers. I commend you for starting a business. Please do not let this one little road bump stop you. Keep on going ahead. If for whatever reason this store does not work out, maybe you are meant to be somewhere else. However, I am sure the appeals is just a formality and you will get up and going in no time. I do know how frustrating it is, nonetheless, to think you are in place to go ahead and the tree falls in front of you, blocking your path.
      Hang in there, keep fighting and keep praying! And I am so glad my little space on the internet helped, even in some small way. Blessings Abound! K. 🙂

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