Disclaimer: This story contains mentions of suicidal thoughts that may be upsetting for some.
Dealing With Debilitating Pain
“I had a really great childhood. I was a happy and healthy kid who loved art and played sports year-round. I excelled in my academics and loved to learn. Life was good as a kid. Until it wasn’t. I remember exactly where I was when I started getting debilitating headaches. I was a sophomore in high school, and during AP European History (right after lunch), the pain would start to creep up on me until my whole head felt like it was being crushed.
I knew something wasn’t normal when this began to happen every single day. My mom started taking me to doctors in an attempt to figure out what was wrong. I remember seeing doctor after doctor after doctor, but none of them could help me. They didn’t know what was causing my daily head pain and tried prescribing what felt like every medication under the sun to help. Nothing worked. And let me clarify—this type of pain wasn’t the kind I could just pop an Advil for. I tried taking Excedrin Migraine for months after my headaches first started and it quickly stopped working after daily use. Nothing seemed to work to make this relentless migraine go away. Which was probably because, as I would one day discover, it wasn’t actually a migraine after all.
After many months of crushing pain each day, with no answers in sight, I became very depressed. I had to stop playing the sports I loved, and even took a school semester off, where I received home-teaching. My friends didn’t understand what was wrong with me. I didn’t know how to deal with the pain and felt like my life as I knew it was over. It got to the point where I told my parents, ‘I can’t do this. I don’t want to live anymore.’ I know that may sound extreme, but when you’re a teenager and chronic pain is robbing you of everything you love, things can get pretty dark.
I was lucky my parents really listened to me and got me into therapy. It was there I learned how to cope and live with my pain. Back then, I never could have imagined I would need these coping skills for the next 15 years of my life. That’s how long it would take for me to get a correct diagnosis and finally learn the cause of my chronic pain. So for the next 15 years, I just learned how to live with constant pain. It was really, really hard. I kept seeing doctors but they still couldn’t figure out how to help me. Somehow I managed to graduate high school and then college. My college years were difficult. I remember walking across campus with a throbbing head all of the time. I would make it to my car and the tears would come pouring out.
During my college years, while most students were partying and enjoying life, I was spending time in the hospital or at home learning how to administer IV medications to myself. I was misdiagnosed with Lyme disease and went through extensive treatment, which caused even more problems. I was also hospitalized three different times for week-long stays at one of the top headache clinics in the country, in an attempt to break the chronic pain cycle. It would help for a short time, but my pain always came back. These years were difficult, but somehow I managed to graduate and get my degree.
Path To Healing
I met my wonderful husband in college, and we were married shortly after I graduated. He never knew me any other way than in constant pain, but he married me anyway. He became my rock. I would need his love and support over the next ten years so much, as my head pain got worse and I started to have problems with my back. My back pain would lead me to eventually have five lumbar surgeries. During this time, I began to find myself in a pretty dark place once again. I was tired. Tired of the constant pain and the array of other debilitating symptoms making it hard for me to fully function in my life the way I wanted to. I was tired of failed surgeries and not understanding why these things kept happening to me, or why I could never find a reason for my pain.
In 2018, I began to experience dizziness and cognitive issues on top of my constant head pain, adding to my despair. I was working as a case manager for Medicaid recipients, and my health made it really difficult to do my job. After struggling to keep it all together for so many years, I made the difficult decision to quit my job. My symptoms continued to worsen, and I found myself so lost and confused as to what the next right step was, so I checked myself into the psych ward of a local hospital. For the second time in my life, I was experiencing suicidal thoughts, and they scared me. I had lost the will to keep fighting and needed help. I felt so broken and lost; I didn’t know where else to turn. Lying on the hard hospital bed, feeling so hopeless and alone, I prayed to God to give me the will to continue fighting and to help me finally find answers.
Soon after, my prayers were answered. I began to see doctors who were finally able to help me and explain what was causing my pain. I was diagnosed with Ehlers-Danlos Syndrome (EDS), a rare connective tissue disorder, and later found out I was also suffering from a cerebrospinal fluid (CSF) leak, which was causing my years of severe head pain and cognitive dysfunction. Cerebrospinal fluid is what cushions the brain. I later learned CSF leaks are one of the most painful conditions known to man. People ask me how I lived with this for so many years. My answer: I had no choice. But I was lucky enough to be treated by one of the top doctors in the country for my CSF leak, and finally began the path to healing.
I cannot even describe the difference having the correct diagnosis made in my life. I finally had answers and understood the cause of all my symptoms. Having constant pain and not knowing the cause is incredibly hard. It helped my mental health immensely to know why my body is the way it is. Having a diagnosis has helped me to heal my broken spirit.
Sharing My Story
During my treatment for my CSF leak, I felt called to start sharing my story with others. I wanted to help anyone who might be suffering in a similar way to know there is hope, even when things seem dark for so long. I started a blog to share my story and keep my family updated on my progress. When I began to hear from strangers, thanking me for sharing my truth and giving them hope, I knew I had to keep writing and try to reach more people who were hurting. Since then, I’ve found hope and healing through writing and sharing my story. I’ve connected with some of the most amazing people, who have shared their own stories of pain and hope with me. And I’ve found a wonderful community of people online who also suffer from chronic illness.
About a year after I started my blog, I also started an Instagram page to help raise awareness for EDS and chronic illness. I learned the average length of time it takes for folks with EDS to be correctly diagnosed is at least 10 years, and for some, it can take multiple decades. This is one of the reasons I continue sharing my story: to help raise awareness for EDS, in the hopes it may help someone else get diagnosed sooner. Being able to connect with and help others through social media has been incredible. I have met some of the most amazing chronic illness warriors and now consider many of them friends. And I can’t even describe the impact it has had on me when I get messages and emails from people who have read my story or seen my posts and want to thank me for helping them feel less alone. It means so much and is exactly why I keep doing what I’m doing.
I want more than anything for people who are suffering, whether it be from chronic illness or mental health issues, or really just anything difficult in life, to know they are not alone. There were many times throughout my journey when I felt alone, like no one else understood what I was going through. And I was lucky to have an incredibly supportive family. I know not everyone has that, so if I can provide some kind of support to someone else out there who is feeling alone, I know I’ve done what I was put on this earth to do.
All I’ve ever wanted to do in life is help others. And it’s been through my painful journey with chronic illness that I’ve been able to do that. So in a way, I see my struggles and suffering as a blessing in disguise. It’s taught me to have so much compassion for others. You never know what someone may be struggling with behind closed doors. I want others who are suffering to know there is hope, even when things seem dark for so long. And out of pain and suffering can come beautiful things. As Elisabeth Kubler-Ross once said, ‘The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.’
My health journey has taught me so many important lessons, and I know I wouldn’t be the person I am today without all I’ve been through. I’ve learned the importance of perseverance and never giving up. I’ve learned how important it is to trust your instincts and your own body. For years, I had doctors tell me my issues were psychological. I even had one doctor tell me I just had anxiety and needed to ‘snap out of it.’ But I knew deep down something was physiologically wrong with my body. So, I kept searching for answers and refused to give up. If I had listened to those doctors, we would have never discovered my body was leaking cerebrospinal fluid, causing my debilitating head pain. Or that I had a rare genetic disorder, the root of all my problems. If I could give one piece of advice to others who are struggling with health issues, it would be to listen to your gut instincts. You know your own body best; don’t let anyone discount your pain or stop you from fighting for answers.
Because of all I have been through, I am stronger and wiser, and my perspective on life has shifted. I have a renewed appreciation for life, and I’m constantly finding beauty and goodness in the world around me. Difficult times have a way of shaping us into better versions of ourselves. I feel that, day-by-day, I am more fully becoming the person I was meant to be. This journey I’ve been on for the past 20 years has been tough, but it has led me to a beautiful place. And, for that, I wouldn’t change a thing.”
This story was submitted to Love What Matters by Samantha DeCosmo from Glen Burnie, Maryland. You can follow her journey on Instagram and her blog. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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