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.

3 tips for MCAS warriors

#1. Never underestimate your mast cells

Everyone has mast cells. Mast cells are part of our immunes systems; they help keep us alive. For most people, mast cells are occasionally annoying – a runny nose in the spring, a bug bite in the summer, or perhaps eczema in the winter.

However, mast cells can also destroy us, especially in the case of mast cell disease. Basically, overactive mast cells incessantly dump dozens of chemicals into our bodies and we suffer in a million different ways. My mast cells have given me a black eye, temporary deafness, paralysis, and adhesions to name a few uncommon symptoms. Reactions can affect every organ of the body, causing symptoms and complications beyond most doctors’ imaginations. Always consider mast cells as the culprit.

#2. Do not ignore or argue with your mast cells

You will not win. Mast cells have strong opinions and rarely compromise. If you continue to disregard your mast cells, they will probably try to suffocate you. I really regret ignoring my mast cells’ warnings and continuing to expose myself common triggers (e.g. heat, high histamine food, fragrance). As a result, instead of just flushing and nausea, my throat started swelling all the time. After my first ER visit, I vowed to listen to my mast cells, but it was too late. They could not calm down. It took a full year of avoiding triggers to decrease the severity of my reactions. Others are not as lucky.

If a trigger is absolutely unavoidable, consider pre-medicating. If you’re undiagnosed and suspect MCAS, pursue blood and urine testing ASAP – don’t ignore it!

#3. When in doubt try Benadryl*

*Unless you’re allergic to Benadryl. Or the doctor says you shouldn’t. I am not a doctor. Please talk to your doctor.

BENADRYL IS MAGIC.

Like most people, I thought Benadryl was just for rashes and sinuses, until I started using it like duct tape for mast cell disease. Dye-free, of course.

Vomiting, dizziness, IBS – Benadryl!

Muscle pain, bone pain, migraine – Benadryl!

Rage, anxiety, doom – yes, can you believe it?! Benadryl!

Please remember, mast cells release many more chemicals other than histamine. That being said, histamine is most notorious for a reason. Again, it can affect every organ of the body. Learning about histamine is a great starting point and nothing taught me more about the effects of histamine than Benadryl. Every time I got relief from taking Benadryl, I knew I could attribute the symptom to histamine.

Of course, the goal is to identify and avoid the trigger in the first place, not pop Benadryl like Tic Tacs. In fact, I try to take Benadryl as sparingly as possible to avoid rebounding and losing effectiveness. There often are better antihistamine options than Benadryl for daily treatment. However, Benadryl can be incredibly helpful in understanding mast cell disease.

Rare(ly diagnosed)

Today is Rare Disease Day and I started the day feeling like a fraud.

Kind of how I feel like a fraud when I have appointments at The Cancer Clinic. In the waiting room, I wonder if all the other patients know I don’t have cancer. Is my thick hair suspicious? Can they tell I haven’t tried chemotherapy yet? I feel sorry for myself sitting alone at The Cancer Clinic, yet I don’t even have cancer!

The truth is mast cell activation syndrome is likely not a rare disease. Some researchers believe more than 5% of people have MCAS! Although MCAS is current classified as a rare disease (affecting less than 200,000 Americans), I wonder what this classification is based on. Did people just start calling it rare simply because it’s newly recognized? I have never seen an official count of MCAS patients, although pulling the ICD-10 diagnosis code data on MCAS would be an easy start.

MCAS is rarely diagnosed for two reasons. First, it’s a newly recognized and very complex disease. It is the most confusing thing I’ve ever tried to learn. For reference, I’ve also tried to learn Chinese, tax increment financing, and Twitter.

Second, diagnosis often depends a cold piss relay race across the country. You have to collect 24 hours’ worth of your pee in your refrigerator, pack it in a cooler, and bring it to a lab. The lab then ships it across the country and you pray it stays cool the whole time. For reference, I can barely give a urine sample in the ER without spilling it on myself.

This year, I teetered back and forth about celebrating Rare Disease Day. I don’t want to be the woman who cried “rare” only to inform everyone that in fact naughty mast cells are lurking everywhere. Yet MCAS patients face the same obstacles any rare disease patient faces: lack of information; few experts; inadequate treatments; and little to no research funding. So where do we fit in?

It’s kind of like when the check-in nurse at The Cancer Clinic learns I have MCAS and insinuates that cancer would probably be easier. And then I have no idea how to feel.

The truth is they all suck: cancer, rare diseases, and MCAS.

Rare Disease Day raises awareness about patients’ lives and advocates for research funding for treatments and cures. MCAS taught me about Rare Disease Day, but I don’t need MCAS to celebrate it. I’ve decided, rare or not, I’m crashing this party (via the Internet (because my mast cells don’t like actual parties)).

Learn more about Rare Disease Day at http://www.rarediseaseday.org.