Per My Last Email: Invisible Illness and the Working Woman

March 12 - Dr. Nahal Delpassand

Invisible illnesses can be defined as physical conditions and/or mental conditions that are not visible to others: for example, arthritis, diabetes, fibromyalgia, crohns/ulcerative colitis, sleep disorders, anxiety, and depression, just to name a few.

About 10 percent of Americans have a medical condition that qualifies as an invisible illness. While these statistics are staggering, they do not shed light on the day-to-day experiences of living and working with invisible illness.

The physical toll of symptoms, coupled with the psychological toll of hiding those symptoms, can lead to added stress and pressure in the workplace. Often my clients report uneasiness with “coming out” and disclosing to employers, for fear of being seen as incapable, weak, or replaceable. The act of hiding is seen as the path of least resistance. There is also an embedded concern of being replaced by someone who is perceived to be “healthier” and, thus, a better fit for the position.

Take the following scenario:

I rarely go out to eat with my co-workers because I am worried I will have a flare. When I do, I check the menu online and map out every bathroom within a 5 mile radius of the restaurant. I worry about how this will impact my social connections at work and my networking capabilities.

I have to brace myself every time I have to walk down what feels like the never-ending hallway. I am conscious of every step because there is no room for error. With every step, I feel a firing sensation in my joints and risk falling flat on my face.

I’m known as the cheerful girl in the office. Little do my colleagues know I sit in my car 30 minutes before work every day, crying. I often feel helpless, powerless and scared.

Living with Invisible Illness

The woman described above may be sitting right next to you in the office, but you may not even know it. Her narrative describes just a few of the real experiences of working women who live with invisible illnesses.

For the woman above, hiding may equate to survival, but it also exacerbates the experience of isolation and shame. If her story resonates with you, ask yourself the following questions: What are your deeply embedded fears and concerns? What are you losing and gaining from keeping this aspect of your identity hidden?

Oftentimes, it is difficult to imagine the possibility of sharing, because the limiting parts of the illness are more palpable. My clinical observations have displayed that empowerment is fostered through being seen, and being fully seen requires taking ownership of a painful experience. It fosters deeper connection with oneself and others, and ultimately leads to a path toward peace and fulfillment.

I have an enduring connection to these worries, fears, and experiences because I, too, am living with an invisible illness. I was diagnosed with slight Cerebral Palsy at birth. Growing up, I was told, I “looked good considering [I] have CP.” This statement fueled my drive to hide my physical difficulties at all costs, because I wanted to live up to what others expected, avoid disappointment and, to a certain degree, deny my own reality.

These self-inflicted expectations bled into my work life. It felt safe to hide. I framed my experience as self-preservation and necessary for my survival—not only in the workplace, but also in all other realms of my life.

However, I realized that through time and increased awareness, this way of living was insidiously killing my spirit. I felt like a fraud, and this curated way of ‘Being’ led to feelings of emptiness and incongruence. It became crucial to me that I share the truths that came with my experience in both the professional and personal realms of my life.

When appropriate, I have shared my lived experience with CP with many of my clients to ameliorate my need to hide. I have found that it is a freeing experience to share my story. I have observed that modeling vulnerability about painful experiences, has helped me deepen trust and safety in my therapeutic relationships.

I also want to be careful and refrain from minimizing the experience of living with invisible illness as only difficult or shameful. There is a spectrum that exists between integration and acceptance. I want to emphasize the importance of recognizing nuances in individual experience and clarify that not all who live with invisible illness, do so in hiding.

I want to shed light on the resilience, grit, gratitude and endurance that is cultivated with this experience. Living with invisible illness, while challenging, promotes ingenuity and increased self-awareness. All of these acquired skills can be translated into the workplace.

Tips for Navigating Your Illness in the Workplace

Reflect on your experience.

Where would you position yourself on the spectrum of integration and acceptance? What are your individual needs in the workplace?

Once needs are understood, identify ways to integrate them into your day to day schedule. Identify potential colleaugues and mentors that can offer support and consultation. I would also recommend utilizing embedded support structures in your company: for example, Employee Assistance Program (EAP). EAP assists employees with personal problems that may impact job performance, health, and mental and emotional well-being.

Assess your current working environment, if your struggling with openness about your experience.

How long have you been there? Do you feel safe in your environment? Do you have strong relationships with colleagues and supervisors?

If so, you may want to consider sharing about your experience. There is risk involved and it will be crucial to take an inventory of potential benefits and costs. If you deem that benefits outweigh costs, though, then disclosure may be appropriate. Open communication about your individual circumstances can help your employer understand your specific needs. This can lead to a better overall experience at work, increased productivity, and efficiency in day-to-day tasks.

If you are new to your job and do not have strong connections at work, it is very important to have a strong support network outside of work. I typically recommend finding support groups in your city that are geared toward discussing shared experiences with invisible illness. This will promote normalization of your experience and, over time, create increased comfort with sharing your experience.

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