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My Journey to Become a Proud Disabled Business Owner

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I am a proud disabled business owner. However, I have not always been. Being a bubble girl is not a badge of honor I wanted to wear. To be frank, I found my disability shameful and embarrassing and wanted to hide it. I desired to be seen as a whole person and not “broken.”

• What is Ehlers-Danlos Syndrome?
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Learning young that success was only attainable if you hid vulnerabilities and put on a good game face was a lie. Yet, it felt the most comfortable place to be and I hid it well.

As a Young Girl

By the age of 5, I was running businesses out of my grandmother’s kitchen. With a mustard-colored rotary phone, stacks of thick books filled with page after page of floral patterned wallpaper, and a pencil in hand, I was making imaginary sales – to imaginary people.

As I type that out, it sounds a little wacky. I was a kid. Did no one else have imaginary clients?

It was obvious 40 years ago that entrepreneurship effortlessly coursed through my veins, yet, I never knew that it would be the golden key to living a quality and secure life with a disability.

Health Crisis

By the age of 14, my mild health issues evolved beyond nuisances, and by the age of 19, they grew debilitating. I was brushed off by every doctor who either told me, “There is nothing actually wrong with you” or “it is all in your head.”

As I was placed on a feeding tube formula in 2012 for 3.5 years, they pinned me as anorexic and encouraged me to go to a treatment center.

Living 20 years with no answers, going in and out of the hospital sometimes numerous times a week, and the constant gaslighting by the medical community was very destabilizing and isolating. The loss of support over time from family and friends who started to believe I was neurotic or a hypochondriac felt crushing.

Honestly, I can’t blame them. Yet, I knew instinctively that something was very wrong even if no one believed me.

My disease is rare, complex, and hard to pin down. I do believe doctors at times tried to help but often gave up. Others doctors did not even give me a chance and brushed me off almost immediately when they could not figure me out and I was not a simple patient. Real doctors don’t like a good mystery like they do in the show “Grey’s Anatomy.”

Aspirations Lost

My college aspiration to be a therapist was unattainable because I did not have the stamina or ability to stay in college. I enrolled and re-enrolled over and over again. I finally had to let it go.

During this time, with an abundance of time on my hands and an inability to get out into the world, being isolated gave me a new direction. I leaned into technology to research my debilitating symptoms, create connections, build community, and try to gain visibility. The internet and technology saved my life in more than one way.

I started to learn website design in 1998, back when Geocities was a thing as well as graphic design and marketing.

Connection Through the Digital Space

Another thing that helped me through the tough times was being creative. I created fine art through digital means due to my severe allergies to any and all art mediums. I mastered painting with a mouse in Photoshop and later was so delighted by the invention of tablets. Creativity and digital connections were not only therapeutic, but one of the few windows I had into the real world, and helped me stay alive.

Not long after I had started to gain ground as an artist as well as a woman in tech, I started to create visibility and income, which gave me the tools to help others do the same.

Tech/Digital Skills: A Window Outside and Independence

Over the last 24 years, these skills and tools have been invaluable to me and others. I run Rise Visible, a full-service digital marketing agency where I help my clients create authentic connections with their audience, help them gain a voice, and move into a more visible space.

Over the last few years of COVID, unlike a larger percent of the population that typically lived more normal and abled-bodied lives, I found the isolation not unfamiliar or hard to deal with. It has always been my normal and nothing changed that much for me. I already worked remotely, I was already limited in where I could go. I often wore a mask (as I have for 15 years). I had already learned to be careful and find ways to live safely.

Yet, I found those close to me who lived much more normal lives had taken a big hit. It was jarring, painful, depressing, and isolating no matter what your belief system is or if you’re able-bodied or not. The whole world changed around us.

Opportunities in Vulnerability

During this time, I found it imperative to be vulnerable and support others who were struggling in this new space. I was able to sustain a number of small businesses by helping them move from in-person to online by building them an e-commerce platform.

I helped other people start and set up online courses for teaching what they loved. I also helped small businesses build solid marketing plans so they could let go of the fear of losing their businesses.

Being a part of a greater story of overcoming and vulnerability for others around me, as well as a very significant life event changed me (more on that soon). I felt it was important not to hide my disability any longer.

Finally, a Diagnosis

In late 2018, I was finally given a medication that changed my life and improved my prognosis – still no diagnosis. In June 2021, I was given a life-changing diagnosis after almost 20 years. I was diagnosed with Ehlers-Danlos syndrome (type 3), mast cell disease, dysautonomia, and POTS. I also have PTSD, craniocervical instability, hiatal hernia, dysphagia, vocal cord dysfunction, neurodiversity, esophageal dysmotility, etc.

The long and short of this is I am Gumby. I am allergic to almost everything (I can eat only 10 foods in the same order – this has been every day for the last 10 years) and can easily go into anaphylaxis over just about anything my body finds abnormal. Food gets stuck in my throat and sternum, making it hard to breathe or digest food.

My autonomic nervous system is on strike and if I stand up or lean over too fast, my heart rate goes up so fast that I can pass out.

My head could fall off like the character in Jenny’s children’s fairy tale “The Green Ribbon.” I also have a slight lisp my partner thinks is cute. It’s all a complicated hodgepodge of genetic mysteries and confusing “ah moments.”

I can’t say I have ever explained my whole medical record which is about 3 inches thick in just a couple of medically poetic sentences – short and sweet for the win.

I Am Disabled. I Can’t Pretend.

I have a life-changing diagnosis that I can’t pretend I don’t have. Believe me, I have tried. The moment I pull my elbow out of socket by twisting the wrong way or almost black out leaning over to pick up a dirty sock, reality hits.

I have learned to accept what is and speak out, because the world that needs people to be real, authentic, and vulnerable. With my newfound stability moving out of survival mode to thriving mode, it would be a disservice to not share my story or try to amplify the voices of other disabled people in the world and in business.

If I hide behind my disability and don’t step into my truth, I am a hypocrite. If I believe in diversity, equity, and inclusion only for others and not myself… how can I be an advocate?

It is cliche to say that “we have to put on our mask first if a plane is going down,” but it is true. We can’t empower others if we minimize ourselves. I am on a mission to create a space that empowers disabled business owners.

The Ebb and Flow of Chronic Illness

Even though right now my disability is stable and I can step up and reach out to help others, it might not always be the case. It is obvious to me and others who live with a chronic illness that our abilities to help and participate in the world are often unpredictable. It is an ebb and flow.

We must meet ourselves where we are right now and right now. Personally, I can stand up and be a voice right now. Later I might have to quietly slip into the background for deep self-care and repair without feeling bad, shameful, or less than. I can champion others who are able to hold the light for a while and run with the torch.

Business ownership has given me the ability to be flexible with my needs, the ability to help others, and the ability to maintain an income. I identify as a disabled business owner and I stand with others in the best way that I can right now. I stand with others who feel marginalized in society.

Visibility for disability is so important.

I am proud to be a disabled business owner.

This story originally appeared on Oregon Disabled Business Owners Association.

Originally published: July 12, 2022
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