Remember me after COVID-19

Dear non-disabled friends, family, and co-workers,

We need to have this talk while your emotions are still raw – while you’re restless and missing your old life; while you’re anxious about your finances; while you’re worried you might die.

This pandemic has been challenging for me, but not in the ways that it is challenging for you. In many ways, I am actually thriving. For the first time in four years, my job is now accessible. My co-workers don’t forget to include me in staff meetings and I don’t have to worry about life-threatening allergic reactions. Without a commute, I finally have enough energy to make dinner every day. My body no longer screams at night.

Many stores that were previously inaccessible to me are now offering curbside pickup and free shipping. Grocers are offering special hours and facilitating social distancing, so I can shop safely. Even my doctor is offering telemedicine. The masks I wear in public are cool now.

The outreach and support I’m receiving is phenomenal. Every day, multiple friends and acquaintances offer their help. They ask me how I am doing and what I’ve been up to. Community members set up a Facebook group to help neighbors like me with errands. Organizations are offering free food, online courses, and mental health resources.

So why I am boiling with resentment?

Because your entire life has changed for the worse and you want to talk about it. You want to vent about the challenges of self-isolation and the fear of illness. You’re struggling to adapt to the uncertainty.

All of your feelings are valid.

But so were mine.

Five years ago, my life was similarly turned upside down by illness. I became confined to about 10 buildings due to severe reactions to fragrances and other chemicals. In other words, no shopping malls, air travel, or dinners with friends.

When I got a disability parking permit, one friend suggested I take advantage of all the places with tough parking. What I really wanted was for her to visit or at least call, but she never did. If she had, she would have realized I could barely walk. I lost many friends because they thought my lifestyle was a choice.

While medical debt threatened my financial stability, I almost lost my job too. My office was not safe, but my manager (at the time) told me working from home wasn’t feasible. After months of stressful HR meetings and medical documentation, I convinced my manager to allow me to work from home one day per week, even though I needed more. It has not caused any performance issues in the past four years.

I will never forget my first birthday in isolation, the year I didn’t receive a single card and no one visited. When I needed support the most, people forgot me. People argued that if I wanted to be included I would need to lower my accommodation expectations. Sometimes it’s just easier to spend Christmas alone.

This pandemic not only validated my grief, but confirmed that I’ve been unnecessarily suffering, because people were unwilling to adapt. 

I finally feel like I belong in society, and I fear that will be taken away. I feel an urgency to share my story and build empathy. My body depends on it.

How can we use these terrible experiences to build a kinder world together?

I know we are capable.

How to ask for a fragrance disability accommodation from a business

Pumpkin spice is here, whether you like it or not.

For me, pumpkin spice is synonymous with death. I don’t just mean in the figurative sense–the end of summer, trees shedding their leaves, and the demise of sensible shoppers.

No, I mean literally. Before September, I already had suffocated from a displaced pumpkin spice broom in a home improvement store. The cinnamon pine cones are sure to follow, filling everyone’s lungs with harmful particles.

Listen, enjoy your latte, but there is no need for pumpkin spice kitty litter. The cats are already suffering.

The problem with seasonal fragrances is I have no idea where they are going to pop up. I usually smell them before I see them, and then it’s too late. Even with rescue medications, my reactions last at least several hours, if not days.

Last year, I had a major victory. I requested my local grocery store remove its cinnamon pine cones… and they did! It took some time–because corporate bureaucracy–but they eventually responded:

“Over the weekend we were able to get approval to remove this product from our floral department. We won’t have them in store after today. Thank you for your patience while we found a resolution for you.”

A few weeks later, I requested another business to stop lighting a candle near its cash register. Their response was even better:

“I am so sorry our candles caused a reaction. We have had a handful of concerns so we understand now the issues the fragrances can cause and will remove them. Thank you for giving us an opportunity to hear you and help.”

In the United States, fragrance sensitivity can be considered a disability and the Americans with Disabilities Act (ADA) requires businesses to make reasonable modifications for people with disabilities.

“ADA requires businesses to make “reasonable modifications” to their usual ways of doing things when serving people with disabilities… Anything that would result in a fundamental alteration – a change in the essential nature of your business – is not required.” – U.S. Department of Justice

Tips for requesting a fragrance disability modification from a business

  • Write an email to the business. It is important to keep a written record of accommodation/modification requests.
  • I prefer to call it a “fragrance disability” instead of a “fragrance sensitivity” when possible.
  • Be specific. Name the store location and product.
  • Be reasonable. The businesses can deny unreasonable requests (e.g. removing all fragrances at all locations). A reasonable modification might be moving fragrant products away from high traffic areas, such as the entrance and cash registers.
  • Be kind and thank the business for its modifications.

Example email for U.S. businesses

I am requesting an ADA reasonable modification for my disability at [store name] in [city]. Today, I had a severe reaction to [product] at your store. I am requesting you to [move or remove the product from a specific area] from your store. I have been a customer for many years; however, I cannot continue to risk my health to shop at your store. A 2019 research study found 32.2% of adults suffer from fragrance sensitivity; this modification will likely benefit other customers.

Thank you,

[Your name]


 

I’d love to hear your experiences requesting fragrance disability accommodations from a business! Email me at hellsbellsandmastcells@gmail.com.

Sticks and stones may break my bones, but pine cones will surely kill me

How to tell someone they smell

Based on my research, people don’t react kindly when you tell them they smell. In fact, it seems to be the quickest way to evoke paranoia.

Technically, everyone smells. Whether it’s from a fresh shower or natural body oils, even the cleanest people have a scent. Just ask my poodle.

However, I am specifically referring to people who drown their bodies in fragrance: perfume, cologne, lotions, deodorant, and detergent. These fragrances can be life-threatening for people with mast cell disease. Just a few seconds of exposure can destroy my health for several days.

Although I try to stick to scent-free environments where people understand my fragrance disability, inevitably someone forgets or doesn’t care. When I was first diagnosed, I tried to be Minnesota Nice and avoid the offenders, but avoidance only left me with two choices: never leave my home or destroy my body. After months of puking, pooping, and gasping for air, I began confronting people.

3 ways to tell someone they smell:

  • Yell “Skunk!” and run away
  • Slap a Mr. Yuck sticker on them
  • Start a game of “Duck, Duck, Smelly Duck”

“You smell” became my default declaration. Every time I sputtered those words, terror swept across the offender’s face, as if they were the one dying. I realize my delivery was not great. In my defense, it’s about all I could manage to say. When your body reacts to fragrance, your organs swell and your oxygen levels drop. Sometimes I become so confused that I forget to flee the room or take my medicine. I fumble for words.

“You smell” was never meant to be a personal attack. I hoped any embarrassment would convince them to respect the scent-free environment. It usually did not. They did not understand the long-term damage caused by their fragrances. I realized it’s easy to tell someone they smell, but it’s hard to explain the consequences.

When I say “you smell,” I mean you’re killing me.

Since my mast cell disease diagnosis four year ago, I have become braver about educating people about my fragrance disability. I have learned requesting scent-free environments is not selfishness. Spreading awareness does not just benefit me; it protects the health of other people with mast cell disease and conditions that cause fragrance sensitivities, such as migraine and asthma.

3 ways to tell someone they smell and it’s harmful:

  • Hand them your EpiPen and say, “You might need this.”
  • Write a passive aggressive blog post and send them the link
  • Email, text, or talk to them after you recover from your reaction. Specifically explain how fragrance affects your body. For example, fragrance reactions can permanently damage my kidney. Probably try this option first.

Of course, you always run the risk of finding out someone is a complete jerk, who doesn’t care if you suffocate or lose an organ. There will always be that one person who suggests you “just wear a mask” without understanding masks don’t block fumes, but they do reduce oxygen flow. It’s best to avoid assholes, whether you have a disability or not.