How to use FMLA leave for chronic illness

In the U.S., the Family and Medical Leave Act (FMLA) provides certain employees with up to 12 weeks of unpaid, job-protected leave per year. Approximately 20% of Americans use FMLA to nurture new spawn (maternity or paternity leave), but most of Americans use FMLA because of health problems.

I prefer to call FMLA the “F*ck My Life Act.”

I applied for FMLA almost a year before my MCAS diagnosis. In April 2015, I was struggling to walk, lift my arms, and digest food. I asked my human resources manager about FMLA and she emailed me a form to be filled out by my doctor. The form asked for a description of my medical condition and the expected duration of the condition, treatment, and recovery.

I wanted to write:

No damn clue. I think I am dying. Please keep paying me though.

My rheumatologist recommended I take two weeks of FMLA to rest and recover, but I refused. Somehow, I knew I would not recover. I knew would need to budget my FMLA time, because once FMLA time runs out, you can be fired if you miss work.

My rheumatologist wrote:

“3 days per episode, every 2 weeks. Needing monthly doctor visits. Expecting to get symptoms controlled in 3 months.”

HAHAHAHAHAHA.

Instead, I only took 78 hours, almost 2 weeks, of FMLA time over the next 3 months. I endured two colonoscopies and two MRIs, and I cried most nights from pain and fatigue.

In July, my primary care doctor filled out a new FMLA form:

“Possible autoimmune disease. Expected duration unknown at this time, possibly lifelong. Unknown, intermittent, unpredictable treatment schedule at this time. 4-8 hours at 1-5 episodes per week for 12 months.”

Over the next year, I took 295 hours, more than 7 weeks, of FMLA time. During this time, I was diagnosed with MCAS and began treatment. For a while, I scheduled FMLA time on Wednesdays to recover, while I tried to learn about my disease and try new medications.

In 2016, it was much easier to describe my medical condition. My mast cell specialist wrote:

“Diagnosed with mast cell activation syndrome. Lifetime duration. Intermittent, unpredictable physical limitations. Anaphylaxis, tachycardia, nausea, and vomiting.”

However, the duration of treatment, recovery, and flare-ups was still impossible to predict. I wanted to write:

My mast cells do what they want when they want, okay? I have no control over this nightmare. Be nice to me.

Instead my mast cell specialist wrote:

“1-8 hours per day, 1-5 days per week, 12 weeks.”

… which is basically the professional way of saying, “No damn clue.”

Since 2015, I have taken an average of 200 hours, or 5 weeks, of FMLA time per year. On average, I use about 5 hours of FMLA time per week. FMLA provides up to 12 weeks, but I use my time as sparingly as my body can tolerate, in case I need a major surgery or have a complication.

The best part of FMLA, aside from not losing my job, is not having to explain myself when MCAS makes me sick. I don’t have to take a picture of my rash for proof or contemplate telling my boss that I am late because I am pooping my guts out. My paperwork allows me to skip the details. I just email my boss, “I need to use FMLA time for the remainder of the day.”

The worst part is nobody seems to understand the terror of having to budget your FMLA time for an unpredictable condition. If I run out of FMLA time, I can lose my job. If I lose my job, I lose my health care, and likely my home. My mast cells don’t give a shit. Sometimes doctors don’t even give a shit. Remember how it took months for doctors to agree to an epidural blood patch for my CSF leak? I went to work with a hole in my head, because I couldn’t afford to use three months of FMLA time. I hate when my FMLA time is wasted because of bad medical care.

I also limit my FMLA time, because I have bills to pay. FMLA provides 12 weeks of unpaid leave. While I can use my paid time (sick and vacation) when I take unpaid FMLA time, my paid time is constantly running out. This is why I rarely take a day off of work for fun.

Although working with MCAS often feels like physical torture, I love my job and the benefits outweigh the negatives. I know I am lucky that FMLA and ADA accommodations allowed me to keep my job after my diagnosis.

Tips for using FMLA leave for chronic illness:

  • Read about FMLA eligibility. Unfortunately, not everyone qualifies.
  • Notify your employer (usually an HR manager) as soon as you realize you need FMLA leave.
  • Schedule an appointment with your doctor just to complete the FMLA paperwork. It usually takes the whole appointment. You will need to fill out this paperwork every year.
  • Draft responses to the paperwork to bring to your doctor appointment to ensure all vital information is included and to save time.
  • Emphasize the unpredictability of your chronic illness, if applicable.
  • Track your FMLA leave time.
  • Don’t call it “F*ck My Life leave” around your HR manager.

But you don’t look dead

In the 80s, HarperCollins decided to encourage children to read by scaring the hell out of them. The scary stories were cleverly disguised with “I Can Read Level 2” emblems. To be fair, I was the type of kid that got nightmares from Nancy Drew. However, I never suspected such simple words could wreck me for so many years.

I wouldn’t be surprised if millennials’ trust issues stem from one story in particular: The Green Ribbon.

Listen to the story with pictures from the actual book.

Basically, a woman named Jenny wears a green ribbon around her neck her whole life and won’t tell her husband why. When she is very old, she removes the ribbon and her head falls off.

No explanation.

Children need explanations to sleep at night.

Until that moment, I hadn’t worried about anyone’s head falling off. Would someone do that to me? Could I trust anyone? I became nauseous every time my mom put on a turtleneck.

Today, I no longer worry about anyone’s head falling off.

I’m too worried about my own head falling off.

You see, I finally understand Jenny, thanks to Ehlers Danlos Syndrome. I am able to look past the fact that she is dead and relate to her cranial instability. After all, I’m half-dead most days anyway.

I have great empathy for Jenny. Even if she did tell people about her cranial instability, no one would have believed her anyway. Doctors probably would have blame it on anxiety.

In fact, I wish I could commiserate with Jenny about the pressure to be alive. We would probably be great friends. She would have understood the complications of my cerebrospinal fluid leak and fear of sneezing. We would have rested our heads, while binging our favorite TV shows. I wouldn’t care that she was dead, as long as she laughed at my jokes.

Jenny would teach me the importance of having boundaries, that it’s not always necessary to disclose my medical conditions. I would tell her Alfred is an ableist asshole, and kinesiology tape is a thing now.

Jenny would never tell me, “But you don’t look sick.”

And I would never tell Jenny, “But you don’t look dead.”

Why are hospital discharge instructions so unhelpful?

Last month, I temporarily lost my vision from a cheeseburger. My iron was low, so I scheduled a cheeseburger like a healthy person schedules a haircut. Not just any cheeseburger, but a $12 grass-fed patty without any seasoning or toppings except cheddar cheese–the same burger I’ve been eating for years.

Less than an hour later, I lost half of my vision in a staff meeting. At first, it was fun to watch my coworkers disappear, but then the doom kicked in. By the time I got to the emergency room, half of my body was numb.

A few seconds later, I felt like I was making a cameo on Grey’s Anatomy. No less than six residents swarmed me. The supervising doctor said they were going to prep me for tPA, and I nodded even though I wasn’t sure what that meant. I knew I was in trouble when the nurse grabbed my service dog.

One resident warned me, “Okay now, big poke!”

I thought, “I think you mean little poke.”

Then two of them in chorus sang, “Big poke!”

I contemplated how quickly six residents would tackle me if I tried to run. In the end, it was a big poke and I have not eaten a cheeseburger since then. Although the doctors quickly ruled out a stroke, it’s terrifying when my mast cell reactions affect my brain. I worry about having a ministroke, if I don’t treat the inflammation quickly enough. I would much rather have hives and vomiting. I didn’t get any gastrointestinal symptoms, but the next day I had two black eyes. The restaurant staff could not have been more helpful trying to identify the culprit, but I may never know what triggered my reaction.

After steroids, Benadryl, and a few hours of observation, a nurse handed me my discharge papers and wished me luck. On the way home, I curiously thumbed through the packet. It’s always interesting what doctors list as the reason for my visits, since mast cell reactions are not an option.

On the sixth page was a 3-inch clipart image of a glass of wine. Below, it read, “Red wine is a common migraine trigger.”

Folks, I haven’t ingested alcohol, let alone a grape in the past four years. Red wine is a common migraine trigger because has enough histamine to give me lips bigger than Angelina Jolie’s.

I don’t know what was more appalling: the useless advice or the wasted paper. Don’t even get me started on clipart. At least, I am accustomed to the useless advice.

“Okay, the discharge instructions say come back if you develop a fever or hives,” the nurse often says.

“I have hives right now. I have hives every day of my life. I am not putting that gown back on,” I reply.

After my gallbladder surgery, I received advice on how to clean my wounds and keep my poop soft (and no clipart). What I really needed was some encouragement and a 24-hour prednisone hotline for when I wanted to punch people in the face.

I guess that’s what Facebook is for.

Post-surgical rage

It’s been five days since my gallbladder removal. I just want to know if I’m going to poop my pants.

Everyone warned me fatty foods will send me running to the toilet. I asked every doctor and nurse if I was going to poop my pants. They all laughed and said no. They said I could eat anything. I don’t believe any of them.

So, I resolved to eat cautiously. I ate chicken and rice for two days. I iced my belly, and watched movies with my poodles.

Everything was fine… until the prednisone kicked in.

Low-fat dieting and 50mg of prednisone ARE NOT COMPATIBLE.

Even though I tried to taper the prednisone as soon as I could, my body is screaming for more food than my stomach can handle. On top of that, I am so angry.

I’m angry I can’t eat peanut butter cups.

I’m angry I’m in too much pain to make my own safe foods.

I’m angry nobody can tell me when I’m going to poop nor how violent it will be.

I’m angry nobody can tell me why my gallbladder was my latest mast cell disease casualty. (No gallstones.)

I’m angry I have to sit with this anger until it passes.

I’m angry that my anger is overshadowing the wonderful care I received all week from nurses and friends.

Finally, I am so angry that last night, as I took my dogs out to pee, my neighbor shouted from his patio, “How are you?”

I wanted to yell, “ARE YOU F%@$ING KIDDING ME?!?! I JUST HAD AN ORGAN REMOVED BECAUSE MY BODY IS DYING FROM YOUR LAUNDRY FUMES!”

I am so angry that nothing I could have yelled would have helped. I stomped off.

Soon I will poop. Soon I will feel better. Soon my neighbor will receive a lawsuit.

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