Information for Friends and Family
Thanks for being here! Wanting to support your friend or family member means a lot to them.
You should know that these disorders are very complicated, and there is very little information that will apply to every patient, but these things might be helpful for now.
Some things you should know about Mast Cell Activation Disorders and other trifecta conditions:
Triggers are different for every patient, and they can change unexpectedly. They're not like allergies.
You will need to ask your friend or family member about their individual triggers if you need to know them.
These can be foods, fragrances (including cooking foods), chemicals, vibration, heat, cold, stress, things they touch, pain, emotions, noise, hormones, insulin or protein fluctuations, pressure changes with the weather, semen, electromagnetic fields, air quality...you get the picture.
The food or fragrance or laundry detergent or vibration or sun that was okay for them yesterday may not be safe for them today (for a number of possible reasons), and there's frequently nothing they can do to predict or prevent this.
Symptoms are different for every patient, and they also can change quickly. Reactions differ from patient to patient and from time to time, even with the same trigger. The smell of your breakfast might give your loved one a stomachache one day and cause a cardiac emergency on another.
These are most often “invisible” disorders. This means that usually, you won't be able to see what's wrong. Many experienced patients also excel at hiding their symptoms. Believe what they tell you they're experiencing. Their symptoms at any given time may be dangerous, merely annoying, or exhausting, or they may be experiencing things like pain, brain fog, or a variety of neurochemical changes that make the worst case of rage and the hardest day of menopause feel like a walk in the park. The feeling that accompanies most serious reactions is a literal neurochemical storm of terror. They may mention they're scared or anxious during this time. There is no way to physiologically make someone more afraid.
Even if you memorize all of the information on this website and your loved one's medical chart, the patient who has been managing this condition for some time has most likely learned enough to earn several degrees worth of knowledge of both the condition as a whole and of their individual needs. Regardless of how much time you devote to this, you will never know more about their needs or be a better guide for their medical and lifestyle choices. Respect their decisions. Even if you happen to be a medical specialist, in this case, your loved one needs your support, not your medical expertise.
In many cases, diagnoses like these change a patient's life in significant ways.
Some things you can do to help:
Make sure the patient knows if you're willing to be a listening ear when they need one (without judgment or advice), but if they don't want to talk about their condition, be okay with this, too. If they need someone to be on the phone with them or to be nearby when they're having a reaction or trying something new (movies in the ER waiting room?), offer to be that person.
Understand that a mast cell patient may need to cancel or change plans at the last minute, or they may encounter a new or unexpected trigger and need to cut things short. Encourage them to do what they need to, and accept that you don't need to know or understand exactly why this is the case if they don't want to spend this difficult time expending even more energy explaining.
Ask if there's anything you can do if they have a reaction when they're with you. Do you know how to administer epinephrine? Do you know where they keep this and any other rescue medications? Do you call 911 or do something else? Let them tell you what they need. Whether you're in a medical setting or not, they may also need you to advocate for them. Ask what they need, or have them prepare a document for you with directions, and then stick to it. Have their back. In most hospitals in the world, for these rare cases, the medical staff will not know better.
If you spend time around a mast cell patient, ask if there are any triggers on your body, clothes, or car that they think might be a problem for them and what you can do to change these things. Don't be surprised if they can smell things you can't. One patient's advice: Imagine that they're a vampire and you're a werewolf. You can't tell, but you've very, very stinky (and potentially very dangerous).
Understand that “just trying to be okay with something for a little while” could risk a mast cell patient's life or set back their progress indefinitely.
Accept that this is their “normal” right now, and don't ask when they might “get better.” If they could have cured themselves, they would have done so. They also would have had a different condition.
Ask if you can help with errands, childcare, food (which often requires very specific directions, and don't deviate), housework, phone calls, note-taking, driving to/from appointments, or other needs.
Ask if there's a way you can spend time with the patient to accommodate their current triggers, energy levels, and so on. Ask what things they might like to do, whether that's a Zoom call or just some virtual company while you're both doing something else, a home movie or game night, a favorite outing that's altered to avoid their triggers, or something else. Some patients haven't been able to focus on what they like to do for some time.
If a mast cell patient visits your home, ask what you can do to help make this a safe space for them. Can you make an outdoor area comfortable for them if they can't safely come inside? (Before this, for your own sake, if you're in this situation, catch up on the last several decades of chemicals banned in most countries by throwing things out like fragrance plug-ins, switching to a nontoxic laundry detergent, ditching the dryer sheets, and stopping cleaning with poison.)
If something like a holiday tradition is important to a patient, ask how you can alter it or, if necessary, create a new tradition they can enjoy. If you gather as a group, work on what you can change to make sure they're not left out.
Ask about other support you might be able to offer. Many patients encounter significant financial stressors with this diagnosis that prevent them from trying medications, supplements, and therapies that might help them. Some could just use a listening ear. Some could use a hand with daily work.
If you have a question about your loved one's condition, ask them, with the caveat that you understand if they don't want to answer or discuss what they're going through at all (...because they want to focus on some more pleasant thoughts, because they do this ALL. THE. TIME. for medical providers and others, or for other reasons that also don't matter). Do NOT ask other family or friends in common. Even though you mean well, this typically adds to inaccuracies, and to the patient, it's just like anyone else who doesn't understand what they're going through talking about them behind their back.