I know how challenging it can be to navigate day-to-day life when you’re dealing with mast cell activation syndrome or histamine intolerance. Even beyond the symptoms, it can be tricky to explain to people exactly what you’re going through.
You may often feel dismissed or misunderstood, especially by those closest to you.
In point form, here are some suggestions for when you’re communicating with others in your circle (in other words, things that you can say to better inform them).
The stress of being invalidated will not help your day-to-day function, so it is important that others understand you as much as possible.
• I am striving to get better and to find a solution. In the meantime, I take one day at a time, because some days are better than others.
• My condition is relatively new to the medical community – often not recognised or not diagnosed. When they dismiss me, it is because they may be misinformed. Your understanding is even more important when that happens.
• Two of my more common symptoms are disrupted sleep and mental fog. Some days, I just feel out of it. The plan I’m on from my doctor will hopefully help.
• I used to love our moments drinking coffee in the morning or wine with dinner. Unfortunately, I cannot do those things with you right now, but we can find other ways to spend quality time together.
• It’s really hot today. Let’s find something to do indoors. The heat makes me so much worse, and is one of the most common known triggers for people like me.
• One of my triggers is physical exertion. I’ll do what I can to help you in the garden and with physical labour. I’m not wanting to skip out on my chores. I think another day might be better.
• My period is coming soon. It’s one of my triggers. My anxiety increases and I feel congested and crappy. Just letting you know.
• Spring is here. While I am excited for that, it’s also the season when my condition is really aggravated. For others it might be fall. For me, I am sensitive to the pollens that are released in spring, but I’m doing what I can to take care of myself.
• There are some foods I just cannot eat. Here is the list my doctor gave me.
• I’m learning to meditate because I need better ways to manage stress. For my condition, stress is a major trigger.
• Components of my condition are hereditary. Together, we can watch out for our children in a reasonable way, to see if they are developing allergies, asthma and other inflammatory conditions.
• The science community is learning more and more about the bacteria in our gut, and how they can produce histamine if unbalanced. It’s why I decided to do special testing, to see what is going on with my “microbiome”.
• I take supplements that are recommended to me by my doctor because they’ve been studied and shown to assist with my condition. When I feel better I won’t need as many, or will take them more sparingly.
• The prescriptions I have are for my condition. Along with the other ways I manage my symptoms, I’m giving them a try. I’m striving to feel better.
Of course, these are only examples, and can be modified to reflect your unique situation. I hope you find these ideas helpful. If you’ve come up with any of your own talking points that have helped you to explain your condition to loved ones, feel free to reach out and share them with us, and we may add them to the list.