Thursday, February 9, 2012


What would you do if you had a literal ball and chain attached to your ankle? It was stuck there, and you had no way of getting it off.  The cuff dug into your skin, and the chain was loud and ugly. It was so unbearably heavy. Would you lay in bed all day to give your leg some relief? Would you lay in bed all day to hide it so you wouldn’t have to explain why you couldn’t just take it off? Would you drag it around with you? Let it clunk down your stairs every morning, trying to dodge the iron ball that could potentially smash your fragile toes? You couldn’t go anywhere without dragging the heavy, painful imprisonment with you. You couldn’t do anything without a reminder that you were trapped by this awful, torturous thing every second of every day. Your ankle bleeding, your legs permanently bruised from the damaged. And you would know, that no matter what you did, it would still be there tomorrow. And it would be there the next day. You know that even in 20 years, you would still be burdened with your permanent ball and chain. How could you enjoy your day while you were constantly in pain? How could you look forward to anything if you knew that there was nothing you could do about your situation? What if others, especially professionals - locksmiths who might help you get it off- said you had done this to yourself for attention, and they dismissed you and mocked you? What would help you to keep going day to day? My readers, how would you feel about yourself if this happened to you? How would you honestly react? You would be faced with lifetime guaranteed of imprisonment, uncertainty, of pain and of fear. How would you have hope?
My ball in chain seems to have a fancy name - myalgic encephalomyelitis. I have most recently been battling not just physically, but mentally, in every aspect of this illness. Having hope and faith is the only way to keep my sanity. Everyday I wake up knowing that I’ll struggle. I know that no matter how many hours of sleep I’ll get, I’ll wake up exhausted. I’ll wake up and have to immediately take my medication to get through the day. I know I’ll be forced to stay on top of the pills, injections and IVs to barely function out of bed. I know some days, I won’t be able to get out of bed. I don’t know if I’ll be healthy enough to live on my own to attend a university in the fall. I don’t know if I’ll be well enough to ever maintain a job, or support a family. I don’t know if my body will even allow me to make a family, or have healthy children. It seems this illness took over my body, and left me with self-hatred and no self-esteem. Often, I feel weak. I feel worthless. I feel scared. I feel guilty. These are feelings I’ve often tried to suppress and cover up in attempts to stay positive. But I’m finding, for myself, the true positivity and strength has come from addressing these issues within myself and working through them. I am not currently being medically treated for depression, nor do I believe that I am clinically depressed, but I would like to address these feelings in which I’m afraid others with this illness may relate to.
Honestly, I’m an obsessor. I over-think, I over-analyze, and I am overly critical on myself. I am also the biggest worry-wart ever. Before falling ill, I welcomed every challenge. I pushed myself as a student and athlete. I wanted to be the best of everything. Now, I’m forced to be okay with myself and my body. I’m learning to love myself. Before I consciously made an effort to stop, I would continually be disappointed in my body and what it did or couldn’t do. I got angry that I had no control over my body or legs. And mostly, I felt like a burden. When I first fell ill, I felt as though I stopped being the fun, carefree and capable girl, and became the patient. I felt so guilty that my parents and family have had to sacrifice so much for me and my health. I knew my best girl friend stepped up and had to start looking out for me everywhere we went. It hurt so much to know that I can’t be the energetic friend for her all the time. But, the hardest thing I’ve had to wrap my head around is how my boyfriend continually loves me. He met me after I first started to fall ill. He got to know me as my illness progressed. He didn’t owe me anything to stay around as it got worse. Almost a year later, and he still loves me. How could he love me, when I hated everything about my body and my situation? And why did I resent and feel guilty that he, among my family and friends, wanted to help me and take care of me? It’s because I felt unworthy. I felt because I had this illness, this ball and chain, I was truly undeserving. I write this in past tense, because I no longer allow myself to think this way. I was made from God, and God made me in His image, His perfect image. I am perfect, and worthy of love. Just as I allow myself to be loved, I will love myself.
This is the most honest I’ve ever been with myself. I truly believe it’s taken more courage to write about this and address my insecurities than it has to have kept them bottled up. My illness is scary. It sucks. I know that I can only find the strength to have hope and faith within myself. My beautiful, disabled self. I’m an obsessor and a worrier, but I’m also a lover. Yes, a lover. I am finding the love in myself, my spirituality, and my relationships... just in time for Valentine’s Day! I still strive for humility and will hopefully never catch a case of ugly narcissism, but I feel the conscious change in my efforts of how I’m thinking about myself and my body will make a positive difference. I’ve struggle with anxiety, and I’ve found even just talking to myself can be more effective than any dose of Xanax. I often just repeat to myself, “I am calm, I am safe, I am perfect, I am loved” over and over until I believe it. I’ve been happy with the world and even my circumstances, but now I’m learning to be happy with myself. Whether you’re in a relationship or not, I encourage you to be your own Valentine this year, and find the happiness in yourself! Our emotions are our own, and because of that, they are beautiful and necessary. Do not be ashamed of how you feel! Just learn to laugh, and grow in love. I am diagnosed, but I am not defined by this “ball and chain” of an illness. And despite the heavy burden of my ball and chain, I will still love myself. And this statement rings of nostalgic tunes but... all we need is love.


  1. This was really poignant and beautiful. I really liked your analogy that ME is like a ball and chain - most helpful. I hope that you continue to grow in God's love and see yourself as He does.

  2. Sara, you are the calm within this storm. As we scramble to find answers and treatments, you continue to awake everyday with a quiet determination and courage to face whatever pain and struggle inevitably come your way. Your beautiful soul has always been so evident, but never more than now. There is so much to love about you and so many ways in which you inspire others. Happy Valentines Day, Sara. Love you, Mom

    1. Wow Sara- thank you so much for sharing so many thoughts and feelings. Your testimony made me a better person today and hopefully tomorrow too. Your mantra is beautiful and I love it! Your words apply to so many people and especially women young and old.
      I am so proud of you, Goddaughter, and believe me God is smiling down on you tonight.
      Hope your college visit went well and you made it to the LIBRARY :)

  3. Hey Sara, I've been thinking about you! You're such a wonderful person and gifted writer. You are so courageous and insightful. I love reading your thoughts. Keep it up.
    Lots of love and HOBY Hugs,
    Liana Carsner

  4. Gorgeous post Sara,

    It really resonated with me.

    It's amazing how having M.E. takes away all previous conceptions of self, strips one bare and then gives the gift of unconditional self-love. At least I think that is what happens. You're right ..all we need is love and despite this crappy burden aren't we lucky to learn that now. Some people never figure it out.

    You are doing so well, keep it up chica, great posting.

    xx Sarah Bellany

  5. Hey Sara,
    You don't know me, I just wanted to tell you that this post really touched my heart and sunk in. You are a strong and brave girl and may god be with you and help you every step of the way!

  6. Hi Sara,
    your post really hits the spot, I am lucky and have only had mild me/cfs and live quite a full/quiet life having retired early. Something that strikes a chord is the obsessive, worrier type we all seem to be which perhaps runs us down and makes us susceptible, I don't know but one day at a time and hopefully occasionally someone will pick that ball up for you and share the load, I will keep in touch

  7. What beautiful writing, its so important to express how we feel about this illness.The ball and chain is bound to drag us down but thats not depression, its normal response to incredible loss. Acceptance and love are really important to dealing with this illness. There are loads of things we can do to help ourselves heal some, with acceptance and love as a foundation. Good luck! look forward to your next post!

  8. Hi Sara!
    My name is Stacy and I've had ME since I was 17. I'm now 35. I have had periods of improvement and decline over the past 18 years, but am still continuing to fight. After all, giving up is not an option for us! Like you, my faith is a large part of what's kept me going, along with the support of a couple of really great friends and my two boys. I can really relate to your struggles. There are so many people out there who JUST DON'T GET IT, but there are also so many of us out there who are living it everyday JUST LIKE YOU! I just wanted to assure you you're not alone. Thank you for sharing your heart with us. You are a beautifully gifted writer and an encouragement to all who are blessed to have come in contact with you. I will be praying for you sweet one!

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