Living with Chronic Illness
I’ve been through something harrowing. Something I haven’t talked about until now. I know there are other people out there who have struggled through something similar. I am choosing now to come out from the shadows and let the light shine upon me. What I went through, I went through alone. But that’s not how we as humans are designed. We weren’t meant to be alone. We are wired for connection, for love, for community. I am stepping out into the light here and now and sharing my pain in the hopes that it that it helps someone else to feel less alone; may it inspire you to connect; may it embolden you to stop hiding; may we all show up for one another and support one another in this human experience because it is that experience that binds us all.
For the better part of the last 9 years, I have struggled with debilitating chronic illness. Chronic illness that for most of that time could not be explained or diagnosed or treated or relieved or cured. But I could describe it: Imagine that you are being chased by a tiger. The tiger is hot on your tail and you know that short of a miracle, you will be overtaken by the much faster mammal and your life will end. What is happening in your body? You are sweating. Your heart is both racing and pounding. You are short of breath. Your brain is filled with panic. Now imagine at the last second, out of nowhere, the tiger is shot with a tranquilizer gun. You stop running. You are out of danger. The nice animal control people are hauling the sedated tiger onto a truck. Your nervous system should be stabilizing. Your fight-flight response should be relaxing. But what if that doesn’t happen? What if your brain is stuck in that moment right before the tranquilizer? That’s what happened to me. Minus the tiger. One day in 2009, my brain got stuck in fight-flight mode, apparently unprovoked, and stayed there for the better part of 8 years.
You know what you can’t do when you are being chased by a tiger? Sleep. And I didn’t. For the first full year, I slept on average 3 hours per night. At the end of that year, I knew I was losing my mind. I have always resisted taking pharmaceuticals of any kind, but at this point, I was at a breaking point and I surrendered to any kind of drug intervention. I ended up having to take 3 different medications just to sometimes get a good night of sleep and still wake up in fight-flight. Eventually the side effects of the drugs bypassed their benefit and I weaned off of them (which was a process in itself). I tried every natural/alternative therapy I could find including, acupuncture, psychotherapy, functional medicine, homeopathy, supplements galore, hypnotherapy, chiropractic, meditation, neuroplasticity, yoga and more. Most of it helped, but none of it cured. None of it gave me my life back.
I began accumulating diagnoses: Multiple Chemical Sensitivities (MCS), Chronic Fatigue Syndrome (CFS), Post-Traumatic Stress Disorder (PTSD), burnout. I was always wired and always tired. Sleep was always a battle. Depletion was the norm. I could never not feel my heart beating right out of my chest. Every day felt like the world's worst hangover. Being in my body was miserable. Most days I wished for death. Anyone who lives with chronic illness will tell you, it’s exhausting. And it’s a poor quality of life.
My chemical sensitivites made it hard for me to even be in the world. My nervous system would go into hyperdrive for days, just from a brief exposure to perfume/cologne, cigarette smoke, laundry detergent, paint, rubber, cleaning products, fragrance of any kind (from shampoos, deodorants, scented candles, etc). And that doesn’t even take into account the countless chemicals in our every day environment that are odorless! I could get on an elevator with someone who was wearing cologne or smelled of that “clean laundry” smell and I would be wasted for the next 3-7 days. So you can bet I was terrified of every little exposure. The scariest part was that my mom suffered from chemical sensitivities, too. I watched the quality of her life diminish over the last years of her life. She passed away at 59 from cirrhosis of the liver - she didn’t drink, she never had Hepatitis, but her liver could no longer detoxify all the toxins in her environment. I was terrified that her fate was my future. I worried every day that not only my health, but my happiness were just going to continue to deteriorate.
As the years passed, I retreated more and more into solitude and isolation. The energy it required just to be around other people kept me home and alone whenever I could be. I worked a full-time job as a consultant in the biotech industry off and on through 5 1/2 of the eight years. Every time one project would end I’d take as long a break as I could afford before starting a new one. My colleagues thought this was frivolous and couldn’t understand why I wanted so much time off. They also couldn’t understand why I wouldn’t go out with them after work or why I stayed home all weekend. They didn’t know that without a full weekend, I had no hope of re-charging for another 5 days of exertion. I kept it all to myself. I worked in a very corporate environment and I felt like I needed to maintain a certain image - one of competency. I performed well at work, despite what I was going through. My bosses only had good things to say about me. I’ve always taken great pride in any work I put out into the world and made work my priority. I probably gave much more than I had just to ensure I did a good job. Which ironically is part of the dynamic that got me into this situation in the first place.
But there was another reason that I kept my health problems a secret: I didn’t want them to become a part of my identity. I didn’t want my world, my conversations, my decisions, my eveything to center around how terrible I felt. My internal world was already consumed with that topic. If my external world matched it, I would have no reprieve. There was something about getting up every day and having to be somewhere where no one knew the internal struggle I was dealing with that made it easier to cope. You know how they say, “Fake it till you make it”? Well, it actually works. I faked being normal and feeling robust and vital until everyone believed it and sometimes I believed it, too. At least until I got home and collapsed on the sofa. Sometimes it would take hours after getting home before I had enough energy to feed myself and prep to start the whole thing over the next day. Sometimes getting through the day felt like running a marathon.
But it wasn’t just my colleagues I kept my secret from. Most of my friends and family didn’t know the extent of my suffering either. Sure, a few knew I struggled, but honestly I don’t think anyone truly understood the extent of my malaise. Again, I didn’t want it to define me. There was so much more to me than these debilitating symptoms and I was terrified of my illness consuming me until it was all anybody saw, including me. So I suffered in silence. I didn’t get out much. I didn’t meet many new people and my world felt very small and very lonely.
The truth is if you haven’t experienced chronic illness, it’s hard to understand. Most people don’t. They can’t. They care and they want to help you, but there really isn’t much they can do. In an effort to do something friends and family would often try to offer some loving advice: “Oh you can’t sleep? Have you tried Chamomile tea?” Have I tried chamomile tea?! Are serious right now? First of all, I haven’t had a good night’s sleep in years and I guarantee you that chamomile tea is not the missing link that’s going to pull it all together. And secondly, OF COURSE I’VE TRIED CHAMOMILE TEA!!! I’ve tried everything!! People mean well and I appreciated their effort and love, but it was easier to pretend to be normal than try to try to explain the horror of what I was experiencing.
The final reason that I kept my health a secret was SHAME. I grew up in an environement where strength was rewarded, where not taking a sick day when you were sick was respected, where pushing yourself beyond your boundaries and ignoring your body’s warning signals was the norm. It did not feel ok to be sick. I felt less than. I felt like there was something wrong with me, like I was defective. So I sure didn’t want to talk about it or bring attention to it.
It was my choice to go it alone. As you can see, I had my reasons. It's hard to say if that was the right choice. I cut myself off from support that could have helped me cope. That part was hard. And lonely. But keeping it hidden also helped me cope. I wish I had been able to let others in in a way that didn’t make it harder. In a way that made it easier. If you are struggling with chronic illness, whatever you have to do to get through the days is perfectly fine. It’s an untenable predicament to be in and there are no right answers. Whatever you do, be kind to yourself. You are doing your best. I wish for you a support system that holds and nourishes you.
Most importantly: Having a chronic illness is not your fault. It is nothing to be ashamed of. Shame is such a toxic emotion that eats at us from the inside out. Self-love was a big part of my journey. I had to learn to love myself through my health problems.
Did I finally turn it around, you’re wondering? Yes, I did. In 2015, I went through an amazing system called Dynamic Neural Retraining which taught me all about how moldable the brain is. I learned that those neural pathways in my brain that got fired every time I was under stress or experienced trauma became very well-worn, like a beloved hiking trail. And soon they became the default. My brain would head straight to fight-flight over the least little thing - exposure to a chemical, a stressful day, large crowds, too much exertion, an intense emotional exchange. The Dynamic Neural Retraining System uses neuroplasticity to teach you to retrain your brain. It was incredibly helpful. It made life tolerable, but it didn’t cure me. I wasn’t normal. I wasn’t thriving. Yet. The best gift it gave me was an understanding of what was going wrong in my brain and the knowledge that the brain is malleable. It gave me hope that the answer was out there and it allowed me to target my research better.
I never gave up. I never stopped looking for a solution. I knew the minute I did, I would be resigning myself to my mother’s fate and I was determined not to do that. I was determined to prevail where she couldn’t. I was fighting for us both.
One day in 2016, I was listening to a podcast that was talking about NeurOptimal® neurofeedback. They were describing this system that reads the brain’s activity and reflects that activity back to it via music. Apparently the brain is blind to it’s own activity, but when it gets this mirror to be able to see itself, it starts to self correct! I thought to myself, “How cool is that?!” I learned that the brain wants to be in it’s most optimal state, it just needs a road map. I got really excited listening to this because it made so much sense. I was especially attracted to the idea that this technology was tapping into the body/brain's own wisdom and self-healing potential, without manipulation or coercion. I immediately looked it up and read everything I could find on it. The more I read, the more convinced I became that this was going to be life changing for me.
I found a local practitioner (which you can do wherever you are by going to www.neuroptimal.com and clicking on “Find a Trainer”) and set up my first appointment. The music was very relaxing and at the end of the session I had this feeling of calm and tranquility and well-being. It was better than a good night’s sleep. It felt like someone had just doused the fire that was my nervous system with cool, refreshing water. I wanted to cling to what felt like magic, but alas it faded the next day - which is to be expected. Healing takes time. But it was a preview of things to come!
With the second session, I got a couple days of clarity and focus like I hadn’t experienced in years! I was so productive those days. Again, I wanted that feeling to last. With each session, I felt more and more permanent benefit.
I had planned a family ski vacation just after my 4th session. I arrived at our condo in Keystone, CO to discover that the entire interior had just been renovated. Like they finished the day before. I walked in and was envelopped in the smell of new carpeting and paint and any number of outgassing chemicals that were assaulting my brain. My heart dropped. I predicted that there was little chance of me making it 24 hours, let alone the whole long weekend. I went to bed that night with fear and sorrow in my heart, my nervous system already amping up. I dosed myself up on Tryptophan and Melatonin hoping it would get me at least a few hours sleep. As expected, a few hours later, I was wide awake with one of my full-on “episodes”. I wanted to cry and scream and shake my fists at the Universe. I was so over this! But a funny thing happened about an hour later. I felt all the fire, all the agitation, all the reactivity and all the dreaded physical sensations that come with it just drain out of my body, like dirty water out of a bathtub. It just disappeared. My body felt relaxed. My brain felt calm. And the next thing I knew, I was waking up to a beautiful, sunny Colorado day, feeling like an absolute champion. I skied all day with a newfound lightness and joy. Since that day in November 2016, I haven’t had another reaction to a single chemical. As far as I was concerned, I had just experienced a miracle.
That was all I needed. I purchased my own unit and committed to sharing this amazing technology with others. The founder of NeurOptimal, Val Brown, had a goal of ending suffering in as many people as possible with NeurOptimal and I am overjoyed to have joined that movement.
Over the next weeks and months, with each session, I continued to gain well-being, vitality, strength and joy. I watched myself transform and re-discover me. My brain was functioning with a newfound, refreshing efficiency. I starting learning French and picked up playing the keyboard. I had energy and returned to my yoga practice and love of hiking. I give thanks every day for this amazing technology. I give thanks for my own strength and determination and perserverance. And I give thanks to my mother, who paved the way before me.
45% of all Americans suffer from at least one chronic condition. If you are one of them, you are not alone. You may feel alone, but most of us aren’t talking about it much. As you are suffering in silence there may be someone right next to you doing the same.
I’m sharing my experience to bring awareness to chronic illness, so that anyone out there suffering can take solace in knowing that others are travelling this same journey. Don’t give up. Fight for yourself. Be your own advocate.
If you need someone to talk to, please reach out to me. If you live in the Boulder/Denver area and are interested in learning about NeurOptimal, please reach out to me. If you live elsewhere, you can find your own practitioner at www.neuroptimal.com.