“My story with chronic illness began in early October of 2003. Earlier in the year I had gotten an infection. I really thought nothing of it. I took an antibiotic to get rid of the infection and then that October I got a cough. Again, I thought nothing of it because I had never been a sickly person. I could literally count on one hand the number of times I had been sick. I remember being at work and feeling a little lousy but I worked with children so I assumed that I probably just picked up a cold that one of the children had. Later that evening after work my husband and I stopped at the store to pick up some medicine for my cough. I got home, took the medicine and laid down to watch tv. Before I knew it I had fallen asleep. When I woke up I felt a little off. I didn’t know exactly what was going on, but I felt weak and dizzy. I made my way downstairs to tell my husband how I was feeling and after navigating the stairs I collapsed in my kitchen. I completely blacked out and started convulsing. My husband immediately called 911 and my life from that point on was never the same.
I spent days and days in and out of the hospital and doctor’s offices trying to find answers for the myriad of symptoms I was experiencing. I was so weak, fatigued and basically unable to function every day. I would do very little activity and feel like I had just run 10 marathons. My legs would randomly give out. My body never felt energized again. It was like every night everyone else’s battery was getting charged up to 100% and I was only getting charged up to 10%. It was hard to think. I was having headaches and neck pain. I was having severe tremors and seizure episodes. My nervous system always felt like it was on fire! I would have dizzy spells and collapse and doctors had no answers. They couldn’t help me or figure out what the problem was. After several years and several different kinds of doctors, I was eventually diagnosed with chronic fatigue syndrome and fibromyalgia.
I am a writer, singer and speaker as well as a wife and mother. I felt like everything that I had worked so hard to achieve was no longer unattainable. I had to keep my illness hidden from the record label I was signed to. I couldn’t tell anyone. It was very isolating and difficult to manage symptoms. I prayed every day that God would give me the strength to complete songs and do performances on the limited strength I had. God always let me know that He was there with me, even in the darkest times. It was so hard to live my life as a wife and mother feeling completely depleted every single day. Just one day of normal activity would put me in bed for a week or more. I wanted to be the best wife and the best mother, but I often felt like I was falling short. Chronic illness completely takes over your life. You base your whole day off of how much you can do before your body completely gives out. It’s a hard line to draw when you have little ones depending on you. I felt isolated and alone. I never felt like I was adequate as a wife and mother. I constantly compared myself to other wives and moms. People would often look at me with disbelief. They couldn’t believe that I suffered so much because on the outside I ‘looked fine.’ They had no clue that my body was in turmoil every day. Chronic Illness makes you unreliable. You have every intention of doing things and you want to get out with other people, but you never know how your body will feel from day to day. I made plans that I couldn’t keep. I made lunch dates and couldn’t go. I had to choose 1 thing every day that I could participate in and most of the time it was something to do with my husband or my children because they were my first priority and I used every bit of my energy to serve them. So needless to say, I didn’t have much of a social life and I couldn’t be there for people the way I wanted to be. People misunderstood and judged me because I ‘never showed up’ or I couldn’t give them the type of friendship they wanted from me, but it was deeper than that….I literally could not do it physically.
No one understands the toll that chronic illness takes on a person mentally. Every day you are giving your absolute best! Sometimes that best is just making it to the bathroom for a shower. Sometimes that best is just being alive. Fighting for your health daily is not an easy task and to hear criticism from others who have no idea what you’re going through does not help. I felt so lost and misunderstood that I got to the point of just wanting to give up. I experienced so much mental anguish that I went into a dark depression. I didn’t understand why this was happening to me. I didn’t understand why God would give me such a difficult circumstance. Why wouldn’t He allow people to believe me? It took me a while, but I was finally able to crawl out of that hole of depression and find purpose in my pain.
I had a total mind shift. I took the pain and started using it to help others. I started using it in my writing. I started using the pain to push me toward being a better person. I started to focus on the lessons God was teaching me through all of the suffering instead of just focusing on my problems. Instead of focusing on all of the things I couldn’t do, I started putting my heart and soul into what I could do. I could love my family well. I could sing my babies to sleep. I could sit and spend quality time with my husband. I could call or text someone and encouraging message. It’s all about perspective and that’s what I learned. My mind had to be renewed and with that renewal came a change of perspective. I could no longer allow the illness to control who I was. I realized that God had big plans for me. The plans didn’t unfold quite like I thought they would, but God was writing a beautiful story in my life and it took me a while to see it, but I’m glad I finally did.
After coming to the realization that God had big plans for me, I had a decision to make and I decided to keep fighting and not to give up. I had spent years suffering in silence and trying to deal with everything the best I could. At this point I wanted to speak up. Not many people around me had experienced life with chronic illness so I had no one to talk to about it, but I wanted to be what I didn’t have for someone else so I started telling my story. I also decided to keep searching for answers. I knew there had to be a cause for the problems I was having. Doctors either completely ignored me or tried to convince me that everything was in my head and I was causing it to happen to myself. I knew better. I remember praying for years for God to reveal the answer that every one was missing. Every time I wanted to give up, I would find myself online researching and watching videos to get more information. Along the journey I was diagnosed and almost diagnosed with a number of different illnesses but I knew that none of the things they’d tested me for was actually it. They were all missing something. Whenever I rotated my head or moved my neck at all my symptoms would get much, much worse. It was a weird thing but it was something that I noticed that happened consistently. I also developed some new symptoms. Pressure headaches, pain behind my eyes, ringing in my ears and severe brain fog. I was having trouble writing and my focus was terrible. I would often forget things and stumble over my thoughts and words. I always felt like I was over compensating just trying to seem normal.
After a year or two of more research I went to an orthopedic surgeon that suspected that I had Bow Hunters Syndrome. He told me that he had actually never treated or seen a case in real life. It was only something that he had read about in books. He told me I would have to find a neurosurgeon that specialized in something like that. This was a break through moment! I finally felt like I was headed in the right direction. I ended up getting new MRIs of my brain and cervical spine and sending them to a neurosurgeon that specialized in Chiari Malformation and Craniocervical Instability. He took my case and my first interaction with him was unbelievable. He understood everything that I had been trying to tell doctors for almost 18 years. He validated me! I felt so seen and heard and I wanted to go back to every medical professional that told me it was all in my head and say, ‘THIS IS REAL and I can prove it!’ I asked my neurosurgeon why so many doctors don’t understand these symptoms and why so many miss these diagnoses. He told me that ultimately they can only treat what they’ve seen or experienced. If you have something that’s out of their scope of expertise you are likely not believed even if you are telling the truth. You’re the zebra and they don’t know what to do with you. After 18 years of pain and mental anguish I was properly diagnosed with Chiari 1 Malformation, Craniocervial Instability, Atlantoaxial Instability, Bow Hunters Syndrome, Movement Disorder, and Tethered Cord Syndrome. These were things that I had never heard of before because they are not ‘mainstream’ yet.
In the past 2 years I’ve had a major surgery on my brain and three major surgeries on my spine. The surgeries were rough and I almost died after my 3rd surgery. I’ve been through so much physical pain and suffering, but I’m still here! I am now on the path to healing. Every day is not roses and butterflies, but I am extremely grateful to God for every bit of progress I am making! I was using mobility aids everyday. Rollator, cane, and wheelchair and now I am able to walk without the use of anything. I used to be embarrassed to use these aids, but now I see them as the help I need to get to where I want to go and I will use aids when I absolutely need them. I am more in tune with my body’s needs and when my body needs to rest I rest. I don’t bite off more than I can chew because I know what I can handle. I have gotten more comfortable giving myself grace and with saying no. I know what it takes for me to get through my day so I no longer worry about judgement from other people nor do I care about what they think about me. I know who I am and I know who God has made me to be, therefore I am secure and comfortable in my own skin.
I am currently considered ‘handicapped’ because of severely limited motion in my spine and some other things. I also wear a medical alert bracelet daily in case of emergency so doctors will no how to treat me….otherwise I could die. Even with all these things I feel capable and able more than I did before. I think that God opened my eyes to see all of the things that I’ve been able to accomplish while being chronically ill. I have a husband and four beautiful children. I’ve traveled the world. I’ve performed in front of some pretty amazing crowds. I’ve written books. I have been able to help other people with my story. No, I may not have been able to do things quite like everyone else. Yes, I’ve had to modify my life because of illness, but it has not stopped me and it won’t stop me. I am able to do everything that I want to do in life. I want others to know that you can live a full life even while you’re dealing with illness. Don’t let the illness become who you are! Use the pain to propel you to great things. Know that you are not alone. Don’t give up on yourself and don’t give up on life because you matter and someone needs to hear your story. I feel like this is just the beginning for me. I’m excited about the life God has given me! My mission is to use the gifts that God has given me to help as many people as I can. I will never stop telling my story because it needs to be heard so I am grateful for this opportunity to share with all of you.”
Shelley
Acworth, Georgia