When Anorexia Recovery Meets Mast Cell Activation Syndrome

I started my eating disorder recovery when I was 16 years old. I spent the next nine years navigating the ups and downs that come with that. In treatment I was introduced to the concept of intuitive eating and was discouraged from avoiding eating things “unless I was allergic to them.”

Haha.

Fast forward, nine years later at age 25 I was diagnosed with mast cell activation syndrome (MCAS). MCAS is an illness that causes you to have allergic reactions to things you’re not necessarily allergic to on lab tests. This past month I have had to swap out my mascara, my laundry detergent and stop wearing the brand-new Yoda socks I bought at Target a few days ago because my mast cells decided they are all enemies. MCAS reactions can look like so many different things and they aren’t always symptoms that you may consider an allergy symptom. These may include low or high blood pressure, nausea, stomach pain, bronchospasms, the list goes on. And probably one of the most confusing parts of MCAS is that the things you react to and the severity of those reactions can change. Randomly. Whenever the mast cells want. Anything from scents to foods to temperature, you name it, someone with MCAS has reacted to it.

You may already see the problem with that.

Before I became sick enough that I was referred for an evaluation regarding my symptoms, I (tried) to eat whatever I wanted. I did not have an eating disordered mindset. I was, essentially, good. But as my MCAS progressed, I had to change virtually every aspect of my life. And that included food. I also did not know this would be permanent.

When I first had to navigate eating disorder recovery and my new MCAS diagnosis, there was nobody who knew both illnesses. There was no ED and MCAS dietitian out there to help me, even though people kept suggesting I see one. They kept recommending a provider that does not exist. And truthfully, it was soul crushing to go from solid anorexia recovery to a medically recommended restrictive diet. It was not quick, it was not simple and it wasn’t fun.

When I first started learning how to navigate mast cell activation syndrome, I relapsed back into my eating disorder. I didn’t tell anyone for a very long time, and it felt like a trap to say anything due to the narrative that often surrounds eating disorder recovery. “Intuitive eating” looks different for everyone, especially when you’re chronically ill.

I did eventually find ways to cope with both aspects of my health.

Here are some things I wish I knew and did regarding my eating disorder recovery when I was first diagnosed with mast cell activation syndrome:

1. I did not have to figure everything out in 24 hours.

It is impossible. The first thing I wish I did when I was diagnosed would’ve been to grieve my idea of what recovery would continue to look like for me. I wish I acknowledged how difficult balancing anorexia recovery and MCAS would be instead of trying to power through it as if it were an action-oriented checklist.

2. Talk about it.

I didn’t bring it up because I didn’t think anyone would understand what I was going through or believe me that it wasn’t just another eating disorder behavior that was fooling me. I didn’t bring it up because I didn’t completely understand either. And at times I questioned my own reality. I believe that if I talked about it that maybe the stress wouldn’t have ended in a relapse. For me, this relapse wasn’t driven by thoughts around my body and was instead due to the fear of what would happen to me if I ended up having a life-threatening reaction to something I ate. This still led to unhealthy behaviors that negatively impacted my health.

3. I wish I knew that I would start to figure things out.

I don’t currently have wonderful symptom control, but I have more knowledge around my triggers. I have gotten foods back and a lot of my GI issues have gotten better with treatment. Facebook groups and other online spaces are great resources filled with people who get it and can provide so much insight. Other members of the groups have given ideas that have really helped me. And even if there isn’t something else I can try, someone else usually understands the frustration or is going through the same thing. The emotional support and validation can help to feel less alone and I wish I knew these groups existed when I was first diagnosed.

My world didn’t end. It just looks really different now. I had to let it fully saturate through my brain and validate myself that I know this is something I have no choice in doing. I tell myself that it is OK my recovery looks different than what I expected it would when I stopped every level of ED care. Because it is! Recovery and MCAS can coexist. And it’s a pretty badass accomplishment.

If you’re going through this, please know you are not alone and you’re doing the best you can in an incredibly complex circumstance.