Fighting for MCAS

In many ways, 2019 was my worst year. My home became unsafe due to my neighbor’s laundry fumes. Even with air purifiers and a Vogmask, I couldn’t use my own bathroom without suffering from MCAS reactions. I missed meals and napped on the floor of my office, because I had nowhere to safely make food or sleep. Due to MCAS, I could not stay at a hotel or a friend’s house. Moving was not a reliably safe option either. Besides, I was already drowning in medical debt, living paycheck-to-paycheck despite working full-time at a well-paying job. I cried often and worried I was going to lose everything. The toll on my body resulted in emergency surgery in September.

But that’s not how I will remember 2019.

I was diagnosed with mast cell activation syndrome (MCAS) in December 2015. For the first three years of diagnosis, it seemed like every minute of every day was spent fighting a reaction. Eating, working, and sleeping seemed impossible. Sometimes I couldn’t walk. My body felt like an unruly toddler, throwing tantrums despite every attempt I made to appease it. I quickly learned medications were not enough.

My mast cells wanted a safer environment. So, I resigned to solitary confinement. (Technically not solitary confinement, because I had internet access, but you should still feel sorry for me.) As my mast cells quieted down, I realized my body is not my enemy. My mast cells are simply trying to protect me from a world swirling with chemicals.

This year, I switched from fighting my body to fighting FOR my body.

For me, the worst part of MCAS is not the lack of treatments or the hospitalizations, but people’s unwillingness to accommodate my health: a coworker who sprays perfume at the expense of my lungs, a neighbor who values fragrant laundry over my ability to eat and sleep, or a doctor who refuses to follow my medication protocol because he’s unfamiliar with MCAS.

Our world does not support MCAS patients. It prioritizes chemicals over people. In 2019, I was done feeling like my body was the problem and undeserving of accommodations. Here are some ways I fought for my body this year:

  • Filed a complaint with the Minnesota Board of Medical Practice. In 2018, a hospitalist refused to follow my emergency protocol and cut off my Benadryl and Diluadid in the middle of the night (after my friends left) and ordered morphine instead. Morphine is dangerous for MCAS patients and listed as an allergy in my chart. The board did not discipline the doctor; however, the complaint is on her permanent file. More importantly, the hospital made sure I received excellent care for my emergency surgery this year.
  • Shared my story with my local newspaper. The reporter interviewed me for one-hour, requested supporting documentation, and interviewed two of my friends. The interview was more stressful than I anticipated (hives!), but the front-page story changed my life and my ability to get people to understand my life with MCAS.
  • Asked for financial help. I think I threw up seven times before posting my GoFundMe, but my options were to lose my condo or ask for financial help. My deepest fear was that I wouldn’t receive the help I need, and I would confirm my feelings that I am not worthy enough to keep my home and survive. (Not true!) I raised $3k for a lawyer and safety improvements to my condo. After my newspaper story published, a local family paid my medical bills and I cried until I had to stop and take Benadryl.
  • Requested air fresheners be removed as a disability accommodation. Two businesses I frequent had air fresheners in their bathrooms. This year, I submitted formal ADA requests in writing. Although, the businesses were resistant at first, after my newspaper story published, the air fresheners disappeared forever.
  • Filed a discrimination complaint with the U.S. Department of Housing and Urban Development. I asked for my condo association to implement a fragrance-free laundry product policy as a disability accommodation under the Fair Housing Act. Instead, my condo association recommended I move several times. That is discrimination. HUD is currently requesting my condo association adopt the policy.
  • Drafted state legislation. Can’t wait to share more on this soon!

I wanted to give up so many times this year! I cried until I puked and I screamed into pillows. Other times, I was so tired or in pain that I couldn’t imagine responding to anymore legal letters. When I hit these breaking points, I stopped everything and rested. I reminded myself I’m not just fighting for my life, I am fighting for all people with MCAS. Then I planned the next tiny step I would take when I was ready.

Let me tell you about a few more moments that gave me hope:

  • When I was admitted to the hospital, my nurse was excited to meet another mast cell disease patient. His son had mastocytosis.
  • My pre-op nurse said she knew exactly how to time my pre-medications, because she had a daughter with MCAS.
  • During an emergency room visit for a hemiplegic migraine, a neurologist asked me to give a 10-minute speech on MCAS for the residents. He ended my lecture by saying, “This is why we listen to patients who know how to manage their disease.”

This year, I was grateful and angry, hopeful and scared. I’m taking all of these feelings into 2020 and continuing the fight for MCAS. I hope you’ll join me.

13 thoughts on “Fighting for MCAS

  1. Thank you for fighting- and for giving me hope that some of these battles can yield workable outcomes for people with MCAS. Wishing you a fragrance-free 2020 and a year in which your body can reap the rewards of these fights…..
    I’m about to lose my job – am on the job hunt and looking to relocate closer to medical care…… and yet the prospect of relocating brings with it the fear of finding a dwelling where I, and my mast cells, can survive….
    because of the job hunt I don’t feel I can be as public about my MCAS as I’d like, but I’m so grateful to your blog so that I don’t feel as alone as I figure out how to navigate MCAS and fight for my body too…. thank you!

  2. Thank you for hope. I’m currently homeless waiting on SSI…. Attempting to walk into a pharmacy ROFL…. Full of freaking candles.

    My anger is upsetting others. I have a “victim mentality” uhm, but your physically harming me!

  3. Would you post more about the HUD process and could it also apply to plug in air fresheners? I have neighbors (also in a condo and prior to recently had fragrance free neighbors) that use plug ins and the chemicals permeate the walls and travel through the vents. This is also a problem with their cooking smells. If their windows are open I can’t even leave my house without having a reaction and am impacted hundreds of feet from their unit due to the plug ins. I also have air purifiers in every room and use masks…not helping. We can’t afford to move either and I am at a loss of what to do. Can we force the HOA to fix the venting issues? Why oh why don’t people recognize how dangerous these things are for everyone/everything and stop using them!?!?!

    1. Any building modifications would be at your expense under FHA. I had to seal the gaps in my condo on my own. However, I would provide the association with medical documentation of your disability and ask them to address the air fresheners seeping into your unit. If vents are shared, it may be reasonable to prohibit continuous air fresheners. It would be harder to address cooking, since people need to eat.

  4. What a positive spin on the year. You’ve done a lot of advocacy work, don’t sell yourself short at all! MCAS is a unique beast. It seems like you handle it with so much grace.

  5. This is truly a wonderful list of accomplishments. As someone with MCAS, EDS and POTS this means so much to me. But how sad, that so many young kids are being diagnosed with this “rare” disorder. It’s definitely not as rare as they try to make it seem. I am saddened to see that dangerous doctor was not held accountable for their egregious harm. How amazing that you are finally being heard by good doctors, and encouraged to share with the next generation of doctors who will certainly be seeing more complex cases like ours. You are doing SO MUCH for our community. Thank you 🙏

    1. Hello! Are there any updates on the fragrance free state legislation? Is there some way we can help? Notify our senators and representatives of a bill number or something? I’m from MN too. Thanks!

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