A Chronic Entrepreneur: Elana Marlo
Elana Marlo’s chronic illness has progressed and evolved over her life. First diagnosed in 2004, her symptoms grew as she moved through life. As she so beautifully articulates below, when she decided to accept where she was and what she needed and stopped trying to be anything else, she finally came to a place of self-love, energy and calm. She now works as a life coach at Elana Marlo Coaching – where she helps others in living and loving as their true self. Before finding her niche, she worked across public education, events and marketing, and took various short-term roles for several startup companies. Her career path has been anything but linear, but every turn and sidestep has shaped her into the person she is today.
What’s your Chronic?
I have a form of mitochondrial disease called Chronic Progressive External Ophthalmoplegia Plus (CPEO+), which contributes to various systemic complications throughout my body such as sleep apnea, gastroparesis, osteopenia, double-vision, muscle fatigue and weakness, exercise intolerance, muscle pains, mental health challenges and more.
Where/when were you diagnosed?
I was diagnosed in Indiana in August of 2004, just before heading back to Pennsylvania for my sophomore year of college.
My first symptom was a droopy eyelid, which started in high school. I visited an eye doctor for further evaluation, and it was discovered that my eyes weren’t moving left, right, up or down very well. I was referred to a neuro-ophthalmologist who was able to make a clinical diagnosis of CPEO the day of my visit. Twelve years later, in 2016, I was able to confirm this diagnosis through genetic testing. Additional symptoms and findings over the years had also changed my diagnosis to CPEO+ because I share some features with a related, but more severe condition called Kearns-Sayre Syndrome.
What does being an entrepreneur mean to you?
To me, being an entrepreneur means creating my own opportunities and forging my own path forward.
What came first, the chronic or the entrepreneurism?
My chronic illness definitely came before my entrepreneurism. While I’ve always had creative ideas and had begun discovering certain qualities about myself that might be better suited for life as an entrepreneur, I wouldn’t have had the courage to take the required risk to start my own business at this time in my life, had it not been for my disease and a sense of necessity.
How did this path come to you?
I struggled for many years trying to fit my high-needs life into the structure and demands of another person’s business. I tried full-time, part-time, and temp work, Fortune 500’s and startups. In the end, regardless of the scenario, my medical needs always outweighed the capacity of my employer’s benefits, flexibility and accommodations.
That’s when I realised I needed to create a path for myself where I could thrive: become my own boss. I resigned in August 2017 from a top-ranked Fortune 500 healthcare company and began a credentialed training program the next month to become a Certified Life Coach. I launched my own business in February 2018 and I now have the joy of bringing all of my life experience, challenges and insights to the forefront as I support others navigating similar obstacles so they can return to their Truest Self and create a life they love.
As an entrepreneur, I can design a business that supports my health needs in every way. I can adjust my schedule, my ambitions and my commitments according to whatever symptoms arise for me week by week. I have the autonomy to block off several days of my schedule if I’m experiencing a flare-up of symptoms. I can also choose to work more and be more productive if I enter into a time of increased energy.
Gone are the days of feeling drained at the end of my work day or dreading the start of my next shift. Now, I can face my work with the same physical symptoms and challenges, but leave feeling energised and inspired.
Did you go through any sort of 12-stages of grief with the diagnosis or take it in its stride? How did the process manifest itself? Did you immediately reassess your life?
While I wouldn’t have recognised it at the time, I can now look back and see that I made my way through the many stages of grief, and have since returned through the cycle again and again as new symptoms and aspects of my diagnosis continue to develop.
I remember the day of my initial diagnosis, riding home with my dad from the doctor’s office in total silence. I didn’t want to speak a word of it to anyone. I would react in anger any time my mum tried to bring up something related to my eyes or my condition, immediately trying to shut down the conversation. Embarrassed to acknowledge my diagnosis to friends or family, I held it close to me for many years, like a shameful secret that shouldn’t be uttered.
Feelings of denial, pain and anger around my diagnosis led to a period of desperately praying and asking God to miraculously heal me of my condition, as was part of my faith tradition at the time. I travelled to see various men and women of faith who were especially known for their gifts of healing, while also diving deep into a spiritual and theological study of miracles and supernatural healing.
During this time, I was still only aware of the effects my disease had on my eye muscles (and potential future impact to my heart). Besides that, I functioned very well in school, I was able to work full-time every summer, and I remained active and social.
Over the next couple years, I encountered some traumatic events in my life, which unbeknownst to me, accelerated the progression of my disease. For the first time, I found myself really struggling physically to continue working at my job. I was standing on my feet for long hours in a retail sales position, and I recall feeling extreme heaviness, where standing felt unbearable. I would stare at the carpet beneath my feet and dreamily wish I could just collapse and lay on the floor. Every smile and interaction with customers felt arduous. Eventually I was diagnosed with depression and began treatment for that; however, when my fatigue and other symptoms persisted, I began exploring additional factors that might be at play.
I sought out a sleep specialist who diagnosed me with a form of sleep apnea – Upper Airway Resistance Syndrome (UARS). I felt so relieved to have found what I thought was the true cause of my fatigue! Sadly, while treatment for that brought some relief, I soon found that my low energy and other symptoms continued.
After further internet research, I ultimately discovered that my mitochondrial disease, which I thought mainly affected my eye muscles, could have systemic involvement and was likely the root cause of my many other health challenges. To my surprise, I uncovered a wealth of resources and medical data online, which had not been accessible to me at the time of my diagnosis many years prior. From there, I began empowering myself with more and more information, learning what it means to become my own health advocate. I became knowledgeable about my disease so I could articulate its nuances to doctors who had never met a patient with mitochondrial disease. I sought out referrals and assembled my own team of specialists, and I incorporated alternative medicine and holistic lifestyle changes into my path toward improving my quality of life.
This new understanding became a turning point in my relationship with chronic illness. I stopped trying to change my physical reality through a miraculous healing or through some magic health fix, and I started focusing my mental and spiritual energy on accepting what is. Accepting my pain. Accepting my low energy. Accepting my limitations. Accepting my need for extensive self-care. To my surprise, as I released resistance to my condition and stopped trying to make it disappear, I began experiencing a greater sense of inner peace and harmony.
I happily rested in this womb of acceptance for two to three years. Eventually though, my inner growth resulted in a desire to be reborn again into the world and create new possibilities. Expansion never ceases! It was really from this generative place that I began dreaming of how I could reshape my lifestyle and career to thrive even more in the midst of chronic illness.
As I discovered my path in the coaching world, I realised that my experience transitioning to life with chronic illness could actually benefit others. I began to own my journey and reclaim the value of my challenges – seeing them as critical points leading to my growth and inner transformation. I continue to hold these truths as illuminating principles for my path forward, knowing that every step of my journey is sacred; each carrying its own unique value, purpose and guiding power.
Did you seek out or join organisations representing your chronic for support or did you find comfort and answers elsewhere? What would you recommend in hindsight?
One of the most helpful and informative organisations I began to follow is called UMDF (United Mitochondrial Disease Foundation). Several years ago, I learned they were hosting an informational event in Seattle, WA, where I had recently moved. I had never met another person with mitochondrial disease until this event. The feeling of being surrounded by other people who shared my disease, ranging in age and severity, but who also shared my struggles, fears and questions, brought a new level of comfort, connection and understanding I had not anticipated. I received incredible information and hope from the researchers and specialists who presented over the course of this two-day event. It was here that I learned the importance of genetic testing for mito patients, and began my process toward that goal. I continue to follow umdf.org as well as mitoaction.org for mitochondrial disease resources and news.
I’ve also explored support groups online through Facebook, online chronic disease communities or community-based apps for people facing various challenges. However, being that I’m very sensitive to the struggles, emotions and needs of others, I’ve found that if I spend too much time in these spaces, I can feel worn down and overwhelmed by all the pain people are experiencing.
My recommendation would be: don’t underestimate the power of meeting people who face similar health challenges as you. Knowing you’re not alone can be incredibly freeing and comforting. Also, certainly seek out support groups of all varieties, but be mindful of how your participation in a given forum or community group is affecting your sense of wellbeing, and let that guide you. If you’re finding connection, relief, resources, support or inspiration, I think you’re in a great place. If you leave feeling more depressed or hopeless about your situation, it might not be the right form of support for you at this time.
How have you changed, if at all, in your relationships, decisions and values?
I have less energy to offer my relationships, but I’m also more secure now in letting people know my limits, where I used to be quick to ignore my own needs for the benefit of others. I now value self-care as a top priority and see it as my foundation for truly loving others.
I used to have a much higher value for performance, excellence and presentation. Coming to terms with my lower energy capacity forced me to redefine those values and let go of many of these externally-focused expectations, aspirations and feelings of obligation. I had to realign with more heart-centred goals and trust that what I have to give is enough, even if it seems like very little or doesn’t meet my perception of societal or cultural norms.
With regard to decisions, I’ve become a less spontaneous and more risk-averse person over time. I now filter opportunities or ideas through a lens of how it might impact my health or if I’ll have what I’ll need to properly care for myself in any given situation.
What is your life philosophy and has this changed?
My life philosophy has mostly stayed the same – seeking to know Love and become Love. The main thing that’s changed is the spiritual framework or language surrounding that journey, which has evolved over time.
Are you on any treatments? Why/why not?
Mitochondrial disease itself doesn’t have a cure, but many types of the disease are responsive to specific vitamin and supplement therapies. In the mito world, these are known as the ‘mito cocktail’. I’ve tried a variety of these with great benefit, but have also had to stop one due to discovering it was causing damage to my liver. As I learned, it’s always recommended to consult with your doctor before adding or changing a vitamin or supplement to your regimen.
There are also a number of holistic lifestyle changes that can help reduce further mitochondrial damage and improve quality of life. Exercise has been shown to improve mitochondrial functioning and certainly improves muscle weakness and muscle pain, so I have invested a lot of time in physical therapy and currently practise yoga as my most healing and rejuvenating form of exercise. Meditation has also been a go-to for reducing stress.
Toxins, whether environmental or from food, cause damage to mitochondria, so I try to reduce or avoid these as much as possible. Massage therapy and regular use of an infrared sauna help flush out toxins and help reduce my muscle pain. I aim for organic food, whenever available and try to avoid processed foods filled with preservatives and harmful ingredients. We shop for eco-friendly cleaning products (with an A rating from ewg.org) and avoid products with synthetic fragrance or harmful chemicals. I also try to treat infections/colds naturally at all costs, to avoid mitochondrial damage caused by most antibiotics.
CPEO causes a number of issues with my eyes, one of them being chronic dry eyes. There are more treatments available, but at the moment, I use eye drops and occasional warm compresses as needed.
For treatment of sleep apnea (UARS), I use an oral appliance and a breathe right strip. The gold standard for sleep apnea is a CPAP machine, which I tried, but with complications. My current treatment plan reduces my respiratory events but not entirely, so I may try the CPAP again at some point.
For treatment of gastroparesis I mostly follow a low fibre diet, eat small frequent meals and eat fat in small quantities. I also use abdominal self-massage to support digestion.
What advice do you have for others starting out on this journey?
Know that you are worth caring for! And if you’re not sure of this truth, seek out support – professional or otherwise, to help you realise it. Offering yourself the compassion and love you deserve will sustain you and anchor you through any challenges ahead.
Chronic illness has such a multi-faceted impact on our lives, so know that learning to thrive might mean being creative and making adjustments over time in multiple dimensions of your life. It might include exploring changes to your diet, finding new forms of recreation, drawing support from diverse spiritual paths, welcoming friendships from a new community or trying various practices to reduce stress. You don’t have to figure it all out at once. The journey is ongoing, and it’s ok to take it one little step at a time. Celebrate your path and all that you’re learning and becoming in this process.
Trust that Life is working everything out for your good. Look for this truth and you’ll begin to notice it alive and well.
What is a ‘bad day’ for you?
A ‘bad day’ for me might involve any combination of feeling too tired to get out of bed or prepare food for myself, inability to focus, stomach pains that make it difficult to eat, muscle pains that make it hard to move or eye pain that keeps me from being able to work or function.
What do you do on a ‘bad day’?
I do my best to practise self-compassion. Then I use whatever energy I have to provide the self-care my body is calling for – rest or more sleep; bland, soft foods; spending time in an infrared sauna; eye compresses; gentle exercise, etc. I’m also sure to soak up plenty of comfort and snuggles from my three fur babies.
How do you deal with stress?
Practising yoga regularly has been an ongoing support line for me, as it reminds me to return to my body and release emotional energy blocks that sometimes I don’t even realise are there. Discovering different forms of meditation has also been an incredibly helpful tool that I would recommend to anyone experiencing stress.
What do you struggle with the most?
I struggle the most with trying to manage daily responsibilities with a limited energy supply – simple things like preparing food, keeping the house clean, staying on top of admin. It often feels like if I focus on any one of these, then I don’t have energy left to give to other important areas of my life.
What are you most proud of?
I’m proud of never giving up on knowing Love, and allowing myself to evolve.
Are you a 5-year planner or are you winging it?
I’m a natural at winging it…moving in the flow is my jam. But I’ve been strongly advised to create a 5-year plan for my business, so I intend to work on that soon.
Ultimate dinner party guests?
Oprah Winfrey, Thich Naht Hanh, Eckhart Tolle, Alanis Morisette…and of course, my family!
What advice would you give your younger self?
It’s ok to take care of you. And…find a good therapist ASAP.
What’s next?
I don’t know what the future holds – for now, I plan to continue nurturing my coaching business, building connections with clients and creating content and resources to support individuals and seekers as they navigate life and spiritual transitions. I’ll take each day as it comes!
How can people find you?
I would be delighted to hear from you!
Website: www.elanamarlo.com
Instagram: @elanamarlo
Twitter: @elanamarlo
Facebook: Elana Marlo Coaching
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