It takes time to learn how to live with Mastocytosis, long-term, and in this article, I discuss how my husband and I deal with acute mast cell attacks in our home.

Communication, we have found, is essential.  

It has taken us a little time, and while I am relatively ‘stable’ these days, here’s how my husband and I have learned to manage my attacks:

• My attacks always start with the rapid onset of diarrhea. I run to the washroom and my husband grabs the fan and ice, which I use to keep cool.
• He gives me Benadryl and Imodium – which I take, orally.
• I then try to stay calm, read a book/magazine and ride it out.
• When, or if, I start to lose the ability to read, then I call him and we decide if I need to use the Epi-pen. If I require epinephrine, my husband opens it and I administer it myself. He then calls 911 and goes down to wait for the ambulance.

Sometimes, it is harder to quantify “not feeling right” - what I sometimes call a “disturbance in the Force”, as my husband is a Star Wars fan. I have diarrhea often which I believe is linked to my Mastocytosis. Others with Mastocytosis experience bone pain, headaches and other things that make life harder than it should be. I also experience some challenges in thinking – things don’t always connect in my brain as they used to. I feel this at work sometimes.

When we live with chronic illness, like we do with mast cell disease, it is hard to deal with the uncertainty of not knowing if an attack is about to start. It can also be frustrating (for everyone) to rearrange plans because we don’t feel well enough to ‘risk it’. Life becomes a series of calculated guesses and improvised or cancelled events. Over time, this is hard on ourselves, and the people around us.

I am fortunate because my husband has a chronic condition so he understands that I cannot always control what is happening to my body and how I am feeling. However, this doesn’t always make it easier for us or make me feel any less guilty. I think the risk is that we may feel like we are letting our family and friends down when we can’t do things we used to do. My advice is to remember that your family and friends love you and just want you to be okay. Don’t add more stress and anxiety in your life by worrying about what you can’t do but focus on what you can.

While I have been ‘stable’ for a long time, I thought it would be interesting to hear from my husband directly:

Kay: How did you feel when I was first diagnosed?

Mike (husband): I felt anxious. I found it overwhelming because the symptoms seemed so severe.

Kay: How do you feel during an attack?

Mike: It’s been so long. You get into a routine of how to deal with it. The suddenness of it, in the middle of the night, was hard to deal with. I find it hard to describe. The fact that you are not really coherent when you are having an attack is hard to deal with.

Kay: What do you do that helps me feel better?

Mike: I don’t know. Bring the fan…. There’s not a lot I can do.

Kay: What recommendations do you have about how to support someone living with Mastocytosis?

Mike: Figure out how to manage it with your spouse. Figure out what triggers attacks. Sometimes, my wife becomes anxious and says, “I’m not feeling well”. It makes me really nervous. I’m not sure how I can help.

Kay: Is there anything I/we can do differently to help you live with Mastocytosis too?

Mike: Try to minimize stress in our lives. It is such a variable thing that it is hard to be prepared for Mastocytosis.

As you can see, while I find my husband is being very supportive and helpful during my attacks, he often feels quite powerless (which, he clearly isn’t). It can be really difficult to watch someone that we love, going through something so uncontrolled and through something that we cannot control beyond bringing supplies, medicines and calling for emergency responders. But actually, their presence and help brings us tremendous comfort, help, and reassurance.

I thought it would be interesting to hear from my daughter, who is 17 years old:

Kay: What is it like living with a parent with Mastocytosis?

MW: I don’t know. You don’t act any differently. You have so many issues. I don’t know what Mastocytosis does.

Kay: What do you recommend to help kids understand Mastocytosis?

MW: I think it is different for every kid. Some kids are more sensitive than others.

Given that I was diagnosed when my daughter was 3 months old, living with Mastocytosis feels normal to her. My daughter knows that I have ‘something’ wrong with me, but doesn’t fully understand it; she knows where the epi-pen is, in case I need emergency help, but I have been stable for so long that she doesn’t think much about it.

While this perspective might not necessarily be very helpful if your mast cells are more active than mine have been, I hope that it provides some hope that ‘normalcy’ is somewhat possible inside some homes and situations for those living with mast cell disease.

Whether we have stable mast cells or not, I think the most important part of managing life with mast cell disease is communication. Our families need to know enough to understand how they can help us. We all need to be patient and understand that plans may change and our families need to know that we aren’t happy about those plans changing either.

Asking, “how can I help you" is always a good start.