Living With a Mast Cell Disease

Photo by Rod Long on Unsplash

Today’s entry won’t be as pretty or sugarcoated as usual. I want to get raw and real about something that’s been weighing me down recently. It’s about my recently diagnosed mast cell disease, and I wanted to give you a window into how it impacts my daily life.

I want to preface and say that, although living with this has been a big inconvenience and feeling sick this often is awful, I’ve come to peace with the fact that God has allowed me to fight this battle for His good purposes. I know it’s sanctifying me and growing my character — specifically, perseverance and faith in His goodness.

So, what is it like to live with my disease? Confusing is the first word that comes to mind. I continue to be baffled by what I’m dealing with in my body, because it’s a rare disease and Google’s information is limited. I am, however, grateful that I’ve mostly nailed down what I can’t eat so as to limit flare-ups (which consist of intense nausea and stomach pains for hours on end… to the point where I have to take days off work).

I can’t eat tomatoes, shellfish, pineapple, food preservatives (which are in all non-organic food), artificial food dyes and flavorings, MSG, chocolate and alcohol. That means at every potluck, Bible study, family dinner, restaurant with friends, date night with my husband, and wedding I attend, I have to explain my complicated disease or be looked at weird for not eating. Or I have to bring my own food. Organic food is sold in grocery stores (thankfully), but most people don’t know what it is, or think it’s a hoax. So if I’m hanging out with people and there’s food, I can’t enjoy it with them.

That’s a big deal for me. So much relationship-building occurs around mealtime. Enjoying delicious new food at a restaurant or going out for a drink with friends isn’t something I can do anymore. My husband is so supportive and understanding, but even he is disappointed (as am I) that we can’t go on traditional date nights. And on our vacation recently, we had to book a hotel that had a kitchen just so we could cook while hiking out in the mountains (that was a challenge).

On top of all this, there are the judgments of other people, or pity, I have to deal with. When I go to the movie theater and bring my own popcorn, I have to explain why I can’t buy theirs (very awkward). When I’m at a family gathering, I bring my own dinner, which feels out of place and I feel like I’m missing out on the shared experience of good holiday food. When I’m at a friend’s house, I have to turn down their fresh, homemade cookies. When a student brings me a Christmas gift of cookies and chocolate and asks me how it was, I have to sadly explain that I’m allergic to basically everything — except certain organic foods.

I say all this to say, life can be really hard when you have health problems. I’m 26 years old and never thought I’d be dealing with this. I don’t feel like I can have a normal social life, which is really painful sometimes. But again, I know God has a plan through all this. I share my story not to complain, but in hopes that it will encourage others out there who are going through something difficult.

You never know what’s going on underneath someone’s smile. So treat everyone with kindness and the love of Jesus. Share some encouragement. Pray with someone. Sympathize. We all need little reminders that we’re not alone, we’re loved, we’re seen, we’re heard. If you feel alone, try joining a local Bible study. It means so much to be surrounded by like-minded people who want to share God’s love with each other. Relationships are what give life meaning. Cherish your friends and family!

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