The Truth About Invisible Illnesses
Let's chat about what inspired me to start a blog and to start writing and telling my story. Invisible illnesses have driven me to put my story out there in hopes to help others. When I first got diagnosed with Spondylolisthesis, my spinal fracture, nerve damage, disc herniation and began my health journey, I felt as if I were a very small fish in a very big pond. I was always the youngest patient in the lobby, and no one my age knew what I was going through. I went from going out with friends and getting used to high school, to being homeschooled and dealing with not being able to get out of bed alone. It was a complete 180 and it took everything out of me. I remember when I was deep into my pain treatments, I was going weekly at this point; I felt alone. I wasn't alone in the fact that my mom never left my side, but I felt completely isolated. Being in pain, being so young, watching social media of friends who were doing normal activities that a teenager does, I never in my life felt so secluded. Like an outsider in my own life. As I sat there in the Pediatric ICU, I never realized how many kids, and young adults are in the hospital day in and day out. There were so many children going through worse diseases than mine. I couldn't help but think that they feel the same way I do, and probably worse. It was in that moment that I just wanted to start a blog and start sharing the reality that came with living in a hospital bed for 4 years and the medical side of my everyday life. During recovery I couldn't find books, blogs, or any social media platform that truly shared anything like this. How was anyone supposed to have any sort of support system with people going through similar situations? I wanted and still want to change that. When you're lying in that bed, pain coming up and down your entire body, your mind full of sadness and sorrow, you can't always help but feel as if you are the only one in the world who is dealing with a hardship or a hard time.
It is so easy to find fashion blogs, sports blogs, team support websites, fan pages, you name it, they most likely have it out there somewhere. It has become my mission in life to share my raw thoughts, stories, and the harsh realities that comes with chronic pain and invisible illnesses, even if it only helps one person.
One of the hardest parts about chronic pain and invisible illnesses, is no none thinking anything is wrong, or thinking just because you have one good day, that means you are "cured." Recovery is a never-ending process for me, and it will always be something that I withstand on a daily basis. The funny thing about chronic pain and an invisible, chronic illness, is it is always with you, and it becomes a part of your daily routine.
Invisible diseases are just that.... invisible! Someone may look "fine" on the outside, but on the inside that person is fighting a never-ending uphill battle.
I have been able to train my mind over the years to accept my pain; but I am always learning new ways to try to live a happy life even while living with a chronic condition.
"You don't look sick"
"You don't look like you're in pain"
"You're working out, how could you possibly be in pain?"
Has anyone else ever had to endure these lovely comments?
Well, if you have.... you're not alone.
I am a gymnast at heart, we were trained and taught, if you got hurt or knocked down, to brush it off and get back to your responsibilities. I brought that mentality with me throughout my surgeries and recovery. Without that mindset, I would not be here today without that carrying me through.... With that being said, I would like to share some stories, because I am on here to be as authentic as possible.
The first circumstance I want to share is, when I was in high school, I had teachers and adults that didn't grasp the severity of my recovery. I ended up being homeschooled from sophomore year until senior year of high school because of the state I was in physically. I was unable to leave the house for more than a certain period of time, due to the pain level and the stress and toll it took on my body. I was the first person who went to my high school to deal with such a traumatic injury, which is a nice way of saying they had no idea how to handle it. The first year, everyone was very supportive, however as time went on, administration and teachers had a very hard time accepting that they had to teach me under certain circumstances. During my senior year, I had one teacher who was not going to pass me unless I physically came into school to take a certain test. This was less than a year after my second spinal fusion and I was very deep into pain management injections. I can recall having my dad driving me to school because I was on pain medication and crying walking into school. The campus was pretty big, and I was unable to walk a certain distance. I went into take the test, completed it, and went home. That night, I was brought to the emergency room because I had intense spasms and was having a hard time breathing from the amount of pain. I am very grateful that I was able to graduate high school and for those who did support me, but it was anything but easy to be able to receive my diploma. It felt like because I didn't have crutches, or a back brace, or was in a wheelchair, that the staff didn't believe the severity of my situation. I constantly felt like I had to prove myself and prove how damaged I was, which isn't something a child should have to go through. It was a hopeless feeling that part of me will always feel.
The next scenario still happens more often than I would like to admit.
I have encountered doctors who accused me of pretending I was in pain just to receive narcotics. I had doctors, and surgeons tell me that all of my pain was in my head and that I needed serious mental therapy to "get over it."
They even went as far as to treat my mother like she was feeding her teenage daughter opioids. I will never forget the feeling of looking at my mother in the hospital, with no hope, no light at the end of the tunnel, no signs of recovering, and not knowing what to do next. I have to give my mom props because she is one bad ass woman who never took flak from these people who didn't understand our situation. That hopeless feeling.... came back with vengeance. I couldn't believe that I had to beg people to believe me. How could anyone think that this is the life I wanted? That this is how I chose to live? It was unimaginable. It was honestly traumatizing.
The next scenario occurred not too long ago,
This lovely woman commented on a video of me doing backflips in the pool with my family, "Dear, is that you flipping around? Why in the world do you need pain management, it doesn't look like you're in pain, other people are actually suffering."
At first, heartbreak sank in and I got very somber and embarrassed....I was suddenly back to being the girl that no-one believed... I went right back to being the "sick" kid that no-one could diagnose or treat. Anxiety came over me like a freight train and I felt myself go right back to being laid up in a hospital bed, in my living room, not knowing what the next day was going to bring. Yes... at the end of the day, I tried some gymnastics skills and posted about it, and yes it hurt like hell!!! However, I was over the moon and couldn't be happier to finally be doing my favorite thing in the world. I should not have to prove my pain to anyone, nor act like a different person because I deal with a disability. Yes, I am in chronic pain 24/7 and I have dealt with depression on and off for years.... However, through much trial and error I have managed to live a healthier, balanced lifestyle while being able to keep my pain level at an attainable level. I choose to be in charge of my life, and future and not let the pain win!! This is the reality of an invisible illness, if someone doesn't see the injury/problem, they do not believe it. It is It causes stress, anxiety, heartbreak, and ill be honest, I have PTSD to this day because of how people treated me during this time.
I can't even count on both hands how many illnesses there are in the world that people undergo great suffering, mentally and physically just to get out of bed and get ready for the day.
I have to be honest; I haven't always been positive and upbeat about chronic pain. I used to let it rule my life and dictate how I was going to live that day. Although, I'll admit there are certain days when my pain rears it's ugly head and I have to just accept it and spend my entire day figuring out how to control and manage it and there is nothing I can do about it. However, it is vital to understand that everyone will have excellent days mixed in with terrible days. But, we have to remember to not let one dreadful day dictate our mood for the rest of that week, month or year. "When it hasn't been your day, your week, your month or your yeeeaarrrrr"....I'll....stop right there before I fully belt out into the Friends theme song!
What works for some people, may not be the best fit for yourself and your journey. Understand that you are not alone and learning how to live a balanced lifestyle is a process But it is so important to conquer those demons. I can't reiterate enough that recovery and living a happy life does not come overnight. Be patient, talk with loved ones, and lets all come together to help one another go through life's challenges.
Share this blog, so we can discuss INVISIBLE ILLNESSES and make it more of an everyday discussion!
Follow along my journey so we can all help one another!
Instagram : @madison_bartlett