10-01-2021 03:21 PM
0 0 524
In recognition of Disability Employment Awareness Month, we spoke with Fawn Bergen about her disability journey at Intel.
Imagine waking up one day feeling like you have a bad flu. You may think to grab some medicine from the pharmacy and stay home for the day. Maybe you’ll make some soup, curl up in bed, and wait for the symptoms to subside, hoping that you’ll get over whatever bug you may have.
But what if those symptoms didn’t go away with rest? What if you woke up every morning in constant physical pain with a fever and brain fog where it was agonizing to just get out of bed—and you were so exhausted, you felt like life was slowly draining from your body? And what if it never went away?
For people like me with myalgic encephalomyelitis, or ME, this just brushes the surface. It’s a constant struggle that’s physically and emotionally draining. But despite this chronic illness, I’m grateful to work for a company that has understood, empathized with, and accommodated me from the beginning.
Life before my diagnosis
Growing up in small towns around the Pacific Northwest, it’s not surprising that I gravitated toward an environmental career. My connection to the natural world shaped what I wanted to do with my life, so I pursued a bachelor’s degree in environmental engineering from the University of Florida. And while I was never an athlete, I loved hiking, camping, running, mountain biking—anything that connected me to nature.
I’ve worked in the environmental field for 22 years. At Intel, I lead our corporate sustainability group, where I bring together my passion for sustainability and my engineering background to help solve environmental challenges.
In 2014, I joined Intel as corporate air program manager. It was my first time working in the tech industry, so it was a steep learning curve.
But suddenly one day, without any apparent cause, I found myself feeling very sick as if I had a bad flu. My head was throbbing, and I had a low-grade fever. I could barely walk around; even the slightest movement around my home made me so exhausted that I would fall to the ground, which told me something was really wrong. Not only was it difficult to take care of myself physically, but I also had to keep up with my new job that was so different from anything I had done before.
I then began a two-year journey to diagnose or treat whatever was behind my symptoms. I had every test done and saw every specialist, but the same result would always come back: no one could explain why I was sick.
Some doctors even brushed off my symptoms as psychological, which is something unfortunately many women experience. “Just go for a walk,” they’d say. “Get some exercise; you’ll feel better.” My general practitioner even prescribed exercise therapy. Because of this, my trust in the medical community began to diminish as their main piece of advice—exercise—would make my symptoms flare up (what we call a “crash”).
I even had doctors yell at me and shame me for not exercising, when in reality they just didn’t have an answer themselves. Even to this day, I have anxiety visiting doctors’ offices because of how I’ve been treated in the past. It was absolutely soul crushing to have so many medical professionals gaslight me into thinking it was all in my head. They wouldn’t tell someone with a broken leg to just “walk it off,” so why would they tell me that my condition simply derived from an active imagination? Who would ever make this up?
What is ME?
After roughly a year and a half without a diagnosis or helpful treatment, I did my own research and found that I had myalgic encephalomyelitis (ME), which is a complex neurological-immune disease. My doctor agreed with me, but while I finally knew what it was, I also learned that there was no recognized treatment for ME, let alone a cure.
If I had to describe in the simplest way what ME feels like, I’d say it feels like the life is literally being sucked out of you while your brain is on fire. And the more you fight it, the worse it gets. It’s devastating how people with ME are ignored by the medical community simply because they don’t yet understand the disease, largely due to grossly inadequate medical research.
Many people assume we’re just lazy or depressed, but in reality, we just feel so incredibly sick that every part of our lives is impacted. But we don’t need sympathy; we need people to understand how this illness works and how it affects our lives on a daily basis. It can affect anyone—no matter how healthy or active of a lifestyle you live. This is also not a rare disease. Approximately 17 to 24 million people globally have ME, and around a quarter of those people have such severe symptoms they cannot talk or leave their bed.1
ME is also often considered an invisible illness because most of the pain—like muscle aches, extreme fatigue, and migraines—aren’t physically seen by other people. When I started using a wheelchair, my illness suddenly became visible, and I gained more understanding from coworkers and strangers. Now people understand that I need more time to move around or to get from one place to another. While it’s hard to explain this complex illness to anyone, I look back and wish I had had that same level of understanding years before.
Telling my manager
During the early days of my illness, I regularly communicated with my manager, Todd. But I couldn’t tell him that there were days when my symptoms were worse, that trying to get myself to work would make me cry because I didn’t know how I was going to make it through the day. Sometimes I felt so defeated, knowing that I would have to walk across a massive campus and act “normal.”
After years of trying to live with my symptoms, I realized I needed to make some big changes in my life before I pushed myself into the severe form of ME. I then heard about the Intel Americans with Disabilities (ADA) accommodation process from a coworker. My first step was to talk with my manager and ask for disability accommodations, which terrified me. Firstly because so many people with ME have had to quit or have been fired because their employers were not willing or able to accommodate. But secondly—and more importantly—I didn’t want anyone to think I couldn’t do my job. I had worked a long time to build a career that I love; I didn’t want my manager or colleagues to see me as my disability and decide it outweighed my contribution to the company.
I started our conversation by saying I was trying to do things that would improve my quality of life and that would enable me to do my job effectively. I said that I was moving into a wheelchair for about 75 percent of the time, and I would greatly benefit from working from home a few days a week. Todd was immediately supportive, and a weight suddenly lifted. I didn’t want to be the employee who was “difficult,” but Todd never made me feel that way. He and my ADA case managers immediately worked with me to make me feel comfortable so I could get my work done effectively.
Having ME while working at Intel
This might sound dramatic, but I truly believe I wouldn’t be where I am today if I didn’t work at Intel and didn’t have such a compassionate manager. My career could have ended if I were working for a company that was not as committed to being inclusive for those with disabilities. My manager especially makes me feel valued for what I bring to Intel every day. I don’t have to hide, and I don’t have to pretend I’m fine when I’m having a hard day.
One thing that I especially admire about Intel is their 2030 RISE goals, particularly under the Inclusive pillar. They are aiming to have up to 10 percent of employees self-identify as having a disability—which I completely understand can be nerve-racking at first. The idea of putting your name on a list can certainly cause anxiety for some. But for me, I feel that Intel has built up enough trust and authenticity that I felt comfortable enough to self-identify as having a disability. Of course, it may take time for some, and others may not think what they have is even considered a disability. But my experience has shown me that Intel is committed to providing reasonable accommodations for those who ask.
Millions of people who have ME aren’t getting the accommodations, patience, and compassion that they deserve. But I’m hoping that companies like Intel can help influence other organizations to stand up and advocate for their employees with disabilities and show them that their disability doesn’t stop them from being who they are or expressing what they can do.
For me, although I am hopeful of some recent progress that has been made in research, I’ve come to terms with my illness and that a big part of who I was is gone. But nonetheless, I still have the same ambition and spirit to live a fulfilling life and have a successful career.
To learn more about how to support people with ME, visit solvecfs.org. If you’re interested in working for an inclusive company that is ready to accommodate you, visit intel.com/jobs.
You must be a registered user to add a comment. If you've already registered, sign in. Otherwise, register and sign in.
About the Author
We make the impossible possible and empower millions around the world through great technology, good corporate citizenship, and inclusive culture. We are Intel, and these are our stories.