6 Things I Wish I Knew When I Was Diagnosed with Systemic Mastocytosis

I’ve always joked that a new diagnosis should come with a handbook for how to navigate your body and your life. While I don’t have a complete manual available, I’ve learned several important lessons along the way that would have helped me when I was first diagnosed with indolent systemic mastocytosis (ISM).

1. Your experience might not look like anyone else’s

Indolent systemic mastocytosis can present very differently in every patient. That means the symptoms you experience and the things that trigger them might not match someone else's, even though you share the exact same diagnosis.

Mastocytosis is known as a "heterogeneous disease," which means wide variation in how it affects each person is normal. If you hear another patient mention they had a severe reaction to a specific food, medication, or environmental factor, that doesn’t automatically mean you’ll react the same way. I have yet to meet another mastocytosis patient with the exact same constellation of symptoms and triggers as mine.

Our varied experiences as ISM patients doesn’t detract from how valuable the ISM patient community can be. Joining support groups or connecting with online communities can be a wonderful way to find people who truly understand what you’re going through.

2. You are your own best advocate

While I’ve always found it easier to advocate for others than for myself, learning self-advocacy has been the single most important lesson in my journey. It gets easier with practice.

Because ISM is considered a rare condition, you may quickly find that your knowledge of the disease surpasses that of the medical providers you see. Staying informed about my diagnosis and medications has helped me understand what’s happening in my body, communicate better with loved ones, and navigate the complexities of healthcare systems.

I recognize that doctors are an important part of my care and they have medical training that I need to access. At the end of each day, it’s my life to live. It is always okay to ask questions and request that doctors explain their clinical reasoning. I’ve found that bringing a loved one to appointments and writing down questions ahead of time are helpful tools to advocate for yourself. You are a crucial member of your care team.

3. Learn how to explain your condition on your terms

Trying to explain a rare, highly variable disease like ISM can be tricky and feel overwhelming. I’ve learned that you only need to share what people need to know to keep you safe and make spaces accessible for you.

For example, I share that I have severe fragrance and chemical sensitivities—my primary ISM triggers. From there, I can share more if I choose to, but setting that basic boundary is often enough to keep me safe without draining my energy.

That said, when people are receptive, I generally take the time to explain more. Education fosters empathy and understanding, and surrounding myself with people who care enough to listen has significantly improved my quality of life.

4. Your value isn’t tied to your productivity

Hopefully this isn’t a hot take, but we live in an ableist society. Our culture heavily ties human worth to productivity. Over time, those societal messages can become internalized—making it deeply painful when your body can't keep up with your own expectations.

If you hit a point where you need to slow down, remember that you are not lazy, and rest is not something you have to earn. It’s okay to prioritize taking care of yourself, and it helps to surround yourself with people who will remind you of your value when your own mind is being hard on you.

5. Living with ISM isn’t a linear experience

In 2017, I had a severe flare-up. Symptoms like brain fog and fatigue became debilitating, making simple tasks take much longer and impacting my memory. My biggest fear was that I was going to be "stuck like that" forever. Over time, I found new management strategies that helped control my symptoms better. Nearly a decade later, I am doing more than I could have imagined back then.

If you experience a bad flare-up, remember that it is not necessarily your new baseline. Symptoms in ISM frequently ebb and flow. On top of that, there is ongoing research and new treatment options emerging for mast cell disorders. When frustration sets in, remind yourself that living with ISM is a marathon, not a sprint.

6. You can still create purpose and connection

Living with a chronic, misunderstood illness is challenging, but it is still possible to find purpose along the way.

For example, I find immense joy in using my journey to support others. I’ve gotten involved in patient advocacy, lead a support group, and co-host the Mast Cast Podcast with a fellow ISM patient.

I also host accessible community events in my local area, which has brought together a wonderful network of people. While I now work flexible, part-time roles rather than a traditional full-time job, having control over my time allows me to show up for the people I love in ways I never could have before.

Getting a diagnosis of ISM can feel overwhelming, but you are not alone. My life hasn't turned out the way I originally planned, but it is deeply rich and fulfilling. You’ve got this.