‘My brain and body are deteriorating.’: Woman shares candid reality of battling rare Idiopathic Intracranial Hypertension

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“I’m scheduled for brain surgery in the next week or so and can’t wrap my head around it all. So many emotions flowing through me, so many unknowns. Who would have thought that having a life-saving surgery in the same month to raise awareness would ever occur? Maybe this is a sign of some good luck or maybe this is just a huge wake-up call, letting me know that my journey is just beginning. I have never been a religious person, but today I have never been closer to God than I am right at this moment. At this point, I have accepted to surrender myself and leave everything up to those who are in power.

mom and son
Courtesy of Jessica Marie Michelle

Knowing this month is meant to raise awareness for Pseudotumor Cerebri, also known as Idiopathic Intracranial Hypertension, has brought so much fear and unknown into my life. It’s so hard to raise awareness for something you know has no cure. My brain/body are deteriorating from this awful disease. It’s hard to put this invisible illness into words. Listing symptoms doesn’t quite emulate what it is like to actually live with the burden of a body that doesn’t function.

All my life I knew something was wrong, but no one would listen until the last year of 2020. This is my raw experience living with this awful disease, on top of many other health complications associated with it. I can confidently say that these are raw details of what most of us who experience an invisible illness ‘feel’ like. No one talks about how we are literally living the human life version of Finding Dory. How we can’t remember what we did less than 20 minutes ago and how our head feels like it’s going to explode.

Nothing we do or take gets rid of the pain; it may help manage it but never take it away. Medications can totally fail completely and we are left with the uncertainty of brain surgery. We literally feel trapped inside our own bodies. Like the old you and the way things used to be are literally trapped inside. It’s the anxiety and depression of not being able to live the life you used to. We have to adapt and cope with this reality. We are all trying so hard to just be the person we used to be before this ugly disease took over our bodies but we physically and mentally can’t. We are truly suffering in silence.

mom and son
Courtesy of Jessica Marie Michelle

Nobody talks about the severity of this. How life-changing this is, and how scared we all are. Constantly feeling and asking ourselves, ‘Is this really it, is my life over?’ As soon as we feel that God awful pain, we fear and know it’s never going to end or get any better. It is so hard to carry on normally at work and complete your daily tasks properly and efficiently. Being a mother and having that innocent child looking up at me, expecting me to be my 100% best is the most difficult part of this whole process.

I feel like I am constantly failing him, but in his eyes, all he sees is his mom doing the very best she can. No one talks about how our loved ones are also being affected. We are in so much pain that it consumes our energy, we have no energy for anything or anyone else. It must be so hard for them to cope while we are living in pain 24/7. Family members may experience strong emotions, such as guilt, anger, sadness, fear, anxiety, depression and so much more. These are normal reactions.

mom and son
Courtesy of Jessica Marie Michelle

They want us to feel better, they want to help but don’t know how because they don’t understand why this is happening to us. Some of them even run away because it is too hard for them to cope, which is in no way right or fair to those with a chronic/invisible illness, but we are stuck with that extra pain of being left alone. It is helpful to talk about these emotions so everyone feels like they are being heard and validated. Just because we are living in constant pain, doesn’t mean their pain and feelings aren’t validated. They are just as lost, hurt, and confused as we are.

No one talks about the pain within our optic nerves being crushed because of the swelling in our brain, how we can go blind at any minute. The fluctuation in our eyesight is a whole new level of uncertainty. How our ears and nose leak because our pressure is so high and the fluid has nowhere else to go. How people like myself who have severe transverse sinus stenosis can’t drain the fluid because of how narrow our veins are, which leaves us completely vulnerable. No one talks about feeling fine one day, and the next we can barely get through the day. How things will literally never be the same.

People are not aware that IIH affects our moods, vision, train of thought, our work ethic, and so much more. Doctors don’t tell us how we can feel the change in pressure in the atmosphere every single time a bad storm or rain is coming, and how it literally makes us feel ill to the point where we can barely do anything. The ringing in our ears is so loud we can’t sleep sometimes. We have a hard time hearing. The weight gain and how weight can actually be a symptom of this disease is heartbreaking. The constant feeling of being exhausted, the pain in our eyes, ears, neck, back, shoulder, and head. The fact that no over-the-counter medications and slim to no prescribed medication gets rid of the pain. We never know from one day to the next, what our days will be like but we fight like hell to survive.

young couple
Courtesy of Jessica Marie Michelle

People don’t talk about how little doctors are educated on this disease, how so many ghost us and could care less. Our body is shutting down and they don’t care. The pressure causes damages that cannot be repaired. It wreaks havoc on our hormones. How certain birth control and different medications can trigger our IIH. We have no metabolism, our immune system is completely compromised. We can gain weight no matter how healthy we eat or how much we exercise (which is impossible when we are dizzy and can’t put our heads down for fear of pain). Sunlight hurts our eyes, driving while the gates to heaven blind our eyesight. An increase in blood pressure hurts us. Humidity hurts us. Doctors don’t help until you are strong and informative enough to find someone who will listen to your cries. They blame the weight and refuse to look at the clear cycle. ‘It’s in your head. Try harder. Take a pill. How about brain surgery? You are a woman, women get a little sensitive and crazy sometimes. It’s probably menopause, maybe you have a factitious disorder, let’s refer you to a medical psychologist.’ They just won’t listen to us until it’s too late.

Nobody talks about how if not properly treated we could have a stroke due to the swelling in our brains. How we feel so different after the swelling comes down from an LP but it accumulates hours after because of how severe our diagnosis is. No one talks about how we don’t even feel like ourselves and how clear it is that there is definite damage done. How the pressure and fluid in our brains can cause pressure on our hearts. If the pressure isn’t kept under control we can stroke out and our hearts could eventually give out. The fluid builds up each day and it can shut down the brain; it forces our hearts to work even harder than someone who doesn’t have this disease.

It is similar to what happens when you dive in the ocean, the pressure builds and unless you have the right equipment, your brain can explode and your heart will eventually fail. The risk of stroke and aneurysms are very real. Every part of our head hurts but where can it go? It starts to radiate down our neck and to our spine. We can feel it in all our joints and the tips of our fingers and toes. Our eyes can not focus from the pain and pressure behind them. Our ears ring so loud it is hard to hear. We feel electric shocks vibrating down our faces and neck.

Courtesy of Jessica Marie Michelle

It’s a pain no one can see. If there is one thing I have learned, it’s not just about the pain, it’s the never-ending pain. It’s the missing things we can no longer do, missing the person we used to be. It’s the way people look at us as if we’re fine or we’re faking it. It’s the medical professionals not believing us, the insurance companies denying our surgeries and medications, the out-of-pocket expenses that leave us in debt for the rest of our lives. It’s the doctors not wanting to treat us because we are so complicated for them to handle, or not knowing how to treat us. It’s the loss…the loss of friends, loss of income, mobility, and self-worth. It’s the guilt, the guilt of not being able to do things, the guilt of being a burden, letting people down, being the cause of added expenses, the guilt of being sick. It’s insomnia, and at the same time, constant fatigue and exhaustion. It’s the sadness, the loneliness, being scared, not knowing what’s next, not knowing if and when it will get worse, or if it will ever get better. It’s so much more than the pain. This is the awareness that no one talks about.

I have also made my peace with it all and have given myself the acceptance that there is hope. Hope that we can go into remission, hope that we can have a successful surgery or type of medication that will put us into remission, hope that someday, someone will find a cure.

My family is the reminder of why I keep pushing and why I keep fighting. If you’re having days in which you feel hopeless, I see you. If you’re beyond exhausted and can’t see the light at the end of the tunnel, I see you. No matter the obstacles you’re enduring, I see you. I’m never giving up and I hope all of you IIH Warriors join me and do the same. We are our own advocates and just know I am here for you. We are rare, we are 1 in 200,000. I’ll never forget how far I’ve come, all the times I pushed myself when I thought I couldn’t. All the times I wanted to give up but I got through another day.

Courtesy of Jessica Marie Michelle

I’ll never forget how much strength I’ve developed along the way. I will continue to live with this disease for the rest of my life but it won’t consume me, it doesn’t own me, I own it. I’m fearless, I am a warrior. I hope for a cure.

If you know anyone with any type of chronic/invisible illness or sickness, love and support them in any way you know how to. Simply be kind and understanding. Just because someone doesn’t ‘look’ sick, doesn’t mean they aren’t. Be kind. So many people are so judgmental and don’t realize what people like us go through every single day. There is also that miracle outlook on our lives that I am still holding onto, to find peace, comfort, to find a miracle.

My husband and son are my rock, my lifesaver. My friends and community are simply amazing. It truly takes a village and I’m blessed to have the best supportive and loving village. If you are of the praying type, please send over some good vibes for me and my family. I would greatly appreciate it.”

Courtesy of Jessica Marie Michelle

This story was submitted to Love What Matters by Jessica Marie Michelle from Bethlehem, NH. You can follow her journey on Facebook. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories.

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[9/24, 12:57 PM] Sophia San Filippo

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