How Fantasy Books Helped Me Accept the Reality of My Chronic Illnesses
It was another boring night and my pain was making another attempt at beating my “highest pain level” record. Lazily I grabbed my Kindle, no doubt one of the more precious things I own, and got a sample of a curious book called “Cinder and Ella” by Kelly Oram. With the ease only a practiced reader could wield, I read that book in one night. I had never felt so understood.
• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?
For 18 years I had been pushing my health issues to the back of my mind, grinding to carve a space for myself in this world. Within seconds I had been transferred to a world where a regular girl struggled to live with a disability. Something she had not foreseen (it never is) completely altered the way she looked at herself and brought about brutal truths she had never had to face before. It was a tale of a girl learning to love herself as those who loved her saw her. She was beautiful no matter what deficiencies she saw in herself, because those so-called “flaws” were actually powerful strengths that made her uniquely her, in all her unfettered and unapologetic glory.
It hit home with me at a time when I didn’t realize I wasn’t the average girl, but also soothed my fears before they had a chance to grow. Each new sentence balmed my soul as I read the emotions I had felt for so long but had been unable to put into words. The book discussed many struggles that come with being different and not being at full health, especially the emotional struggles no one had ever talked with me about. That fear you will never be all right, the concern that you have lost yourself, and even more the poignant problem of who could love you and see the real you as you were before your health declined, and also the you that has grown through all your trials.
It was beautifully enlightening and I kept the book close for weeks after, reading it over and over again. I was relieved to not feel alone, and realizing there were others out there going through things that were equally hard for them warmed my soul. I had never felt so seen. At last I was looking at my health struggles as a part of me instead of a disease to be rid of, and I was also looking at them as a way to be better than I was. I began to see my chronic illnesses as a challenge to face head on and succeed, with no doubt a few compromises along the way. Exactly as life is meant to be lived.
I felt as if I had found the book I needed at exactly the moment I needed it to prepare me properly for what life and more health issues would bring. Years passed, more health issues came and more emotional and pain-filled struggles came. And as serendipity would have it, I came across “Seraphina” by Rachel Hartman. It hit me almost in the same way, but in an older and more mature way, just I had grown and matured the past five years.
As I read, I learned to come to grips with new health issues, realizing I am not the center of the universe and others have struggles that are different and even harder than mine. I absolutely needed that smackdown. Armed with that powerful knowledge and lesson, I found steady ground knowing not having “normal” health was not extremely rare and that I was not alone in my journey of feeling lesser with my disabilities. Even more intense was the challenging of my preconceived notions: I realized I had felt so wronged by the world and demanded compensation for things that “just were.”
I was put in my place and back on track to realizing my duty to bettering the world should come before the bettering of myself. We are all different and unique in ways others often cannot understand. That is as it should be, because we were meant to use it for good, to show others they are not alone and these mountains can be moved.
I never would have thought my love for reading fantastical fictional books about dragons, knights, princesses, princes and fairy tales would help me deal with my disabilities. Who knew that my obsession with reading and finding two diverse books could help me with the daily grind of surviving and perhaps even loving my health issues? Who can regret that?
Getty image by E71lena.
I have dealt with pain for 17-almost 18 years already, passing the half-my-life-with-pain mark now being 29. It started with me being born with twisted leg bones followed by discovering this at the age of 13 after pain in my knees from my twisted bones grinding on them. 2 years later I had waist down reconstruction surgery. The left surgery went well. The right surgery did NOT. Epidural didn’t work (later finding out it was because of my Ehlers Danlos Syndrome) and my nerves were rewired from the extreme pain via my bones being broken and twisted to straighten them. I was diagnosed with Amplified Musculoskeletal Pain Syndrome (AMPS) which was full body-extremely rare. I learned to ignore the pain so I could try and live a normal life, but it got so bad my hands no longer would work from the excruciating pain. I barely made it to graduation, failing my last quarter of school. Luckily my ranking was 4th so I still graduated with extreme pain and with help from others who had to write for me. Pretty quickly I was bed-bound and dreaming of hospitalization so I could have strong medication to ease my molecular deep ache. Severe Plantar Fasciitis kept me avoiding walking at many costs. Flash forward to 3 years later when I was miraculously healed over-night. I thought I was free and worked on gaining back all my muscles that were atrophied. But then my pain came back and began rising ever higher with many more complications taking over every bit of my body. I joined this site for freedom to express my struggle held deep inside for so long with a smile on my face and not even my family knowing what I went through. I never realized how glorious it was to be open and now I refuse to go back. My sense of peace demands to no longer have a fake smile on my face. I am now diagnosed with EDS, AMPS, Fibromyalgia, Hypothyroidism, Severe Insomnia, Asthma, Hypersomnia, Lymphedema, Chronic Fatigue Syndrome, PTSD, Scoliosis, Sciatica, Bone and Shin Splints and recently promised that I will soon cross the line and be diagnosed with Juvenile Arthritis. It is SO freeing to know that the reason for all of my pain is because of my many overlapping diagnoses. I am currently working on filing for disability and have lost my dream of Interior Design to keep me warm. Also dealing with blisters covering my scalp and making it ridiculously tender with serious GERD and acid reflux problems due to the EDS. Constantly focusing on not throwing up each second is my new normal. Swallowing 10 times per first swallow is becoming habit. Psoriasis and Eczema now are hitting me harder than ever. I walk like a 96yr old woman and hurt so much worse. Only recently did my new rheumatologist pinpoint my last pain diagnoses as being Spine Arthritis, Psoriatic Arthritis, and RA. At long last I have found a home health company that save me pain and energy by coming to my house for appointments. It is ingenious and such a blessing! My new PCP is a brilliant and knowledgeable woman who actually cares for her patients! She wants us to live our best lives and works hard for it to be so. Thanks to her I now also have a pain doctor who CARES and is not afraid to help his patients live their most pain-free lives!!! He is SUCH a gem like her! It almost 18 years to find these blessed doctors. The biggest lesson I have learned is that my happiness is vital and if I have a doctor that isn't measuring up, drop them ASAP! Life is too short to suffer at the hands of others-especially when we are paying them to supposedly help us! It isn't worth it but YOU ARE! Finally in a place in my life where the future looks bright and I am excited for the challenges, as I know my health loves to constantly cause more pain and troubles like my Major Depressive Disorder, Psychosis, and Anxiety. I have been given a VERY complicated and Unique body that I choose to have as I know it better than anyone else. It is mine and we will learn to become a team though it may take a lifetime. I will never give up. No matter what I will fight on! Just as I have these long years, savoring each moment and smiling at each thing that lifts my burden a little. Life should be cherished, no matter how pain-filled. And with The Mighty at my ruined and failing finger-tips, I will carefully walk into the world with my shoulders back, face to the sun, and hope in my heart with a wish to lift a few fellow down-trodden. We got this!!!!
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