Coexistence

The list of offensive things people say to patients with chronic illness is seemingly endless. Even after all this time, it still amazes me what people feel entitled to say about my health. It also still amazes me how much it can hurt.

My diseases permeate and affect every single part of my body and my life. That’s not because I’m “obsessed” or “caught up in it” or “looking for an excuse.” It’s because my body makes too many defective mast cells, defective collagen, antibodies to my thyroid, nuclei of my cells and joints, not enough cortisol, and a cardiovascular system that is pathologically incapable of maintaining stable blood pressure and heart rate. I work hard to live around the hindrance of multiple rare diseases, and I do, to a certain extent. But that’s not the same as “moving on” or “getting past it.” It’s like eventually learning to live with a roommate that leaves their hair in the drain, is always late with rent and sometimes poisons your food.

I am actively engaged in a power struggle with my body pretty much constantly. I take medication about every thirty minutes while I’m awake and continuously overnight. I plan every part of my day, including when I have to go to the bathroom. I identify triggers I may encounter and try to minimize exposure.

One of the most important ways I reduce exposure to triggers is by communicating them to the people around me. In situations where people know me and/or I am reliant upon them to care for me, I try to educate as much as possible. Otherwise, I just give my elevator speech: “I have a rare blood disorder that causes me to have severe allergic reactions to things I’m actually not allergic to. I have hundreds of these false allergies.” Sometimes I do it to avoid confusion, sometimes because I don’t feel like talking about my health and sometimes because I know that what I say won’t change their behavior.

I rarely eat in restaurants and when I do, it is because I have talked to the chef (usually ahead of time) and identified a safe meal for me. Even when I have done this, there can be misunderstandings that require my food to be sent back and made again. Even outside of restaurants, I prefer not to eat food that wasn’t prepared by me or someone I trust. There is too much risk.

People often don’t understand how easy it is to unintentionally contaminate my food. They sometimes think the amount of an ingredient is too small to elicit a reaction and therefore not worth the trouble to make it without. And then there is the biggest risk of all: the people who want to “test” me and see if I’m “really allergic.” They think it’s too much of a strain to just accept that if I say I need something prepared a certain way that it is necessary.

Or worse, they believe we can be sickened in the way we say, but feel absolved of social responsibility.  That society should not have to change to protect the few and neither should they.

When I am trying to explain the sort of things people like me experience regularly, I ask them to first think about pregnancy. Pregnant women observe a number of restrictions to keep themselves and their babies safe, such as avoidance of certain foods and medications, regular medical care, and avoidance of particular physical activities.

You know what I almost never hear people say to pregnant women?

“Why do you keep talking about being pregnant? Can’t you focus on something else?”

“It’s not healthy to talk about being pregnant all the time.”

“It’s probably not that dangerous, you should just try it.”

“I have never heard of that, I know lots of pregnant women and they say doing [triggering thing] is fine.”

“You’re not pregnant, you don’t even look pregnant.”

“You should give up your seat to that person, you don’t look like you need it to me.”

“Have you ever tried just not being pregnant?”

“Pregnancy is a mindset.”

“If I [make it without triggering ingredient], I’m going to have to cook your meal separately. Is it really worth it?”

“It’s only a little alcohol.”

“Why do you go to the doctor all the time?”

“Why would you go to the hospital for a tiny thing like that?”

“Well, it’s obviously your fault that you’re having pregnancy complications because you did [unrelated thing].”

“Your pregnancy is too much of a pain in the ass of us.”

“You can’t expect us to change things just to make it safe for you.”

“You would probably feel a lot better if you would just lose some weight.”

“You don’t need to listen what your doctor says, they are shills for Big Pharma. My cousin took [current popular panacea] and they did way better on it.”

So why is it okay to say things like this to people like me who are sick? If you replace “pregnant/pregnancy” with “chronically ill/chronic illness,” every single one of these things has been said to me many times over.

I’m a pretty brassy woman. It is not easy to embarrass me or make me uncomfortable. Except in this way. Requiring the assistance of people I don’t know well and don’t trust is inherently disarming and leaves me vulnerable. When I have to tell someone that I can’t eat that/go there/commit time to something worthwhile, I have to steel myself. I need to be safe but I also need to feel like I’m not a burden and an outsider.

I don’t ask most people to help keep me safe from every trigger I have, I just ask them to keep me safe from the worst ones. Once you start listing things, people either assume you are being dramatic or lying; or they realize you aren’t, but just don’t care. They might care that you’re sick but not enough to alter their routine in small ways.

We are not inventing our triggers to make your life more difficult. We are not pretending to be sick to get “special treatment” and are not just being “picky.” We are not sick because we don’t want to get better. We are struggling to make it through every day without triggering a reaction that could hospitalize or kill us.

Last night, my mastsister Addie was exposed to something that many people refuse to believe can actually trigger anaphylaxis.  She was not even in the same room as the trigger.  She need two doses of epinephrine, multiple doses of IV Benadryl, IV SoluMedrol and fluids.  She was sick for hours and is recovering today.

Addie asks people to help keep her safe

Please take our triggers seriously.  Please take our disease seriously.  People die from anaphylaxis every year.  In some cases, it could have been avoided if their allergies were taken seriously.

We are not telling you that the world needs to accommodate us in every way. We are asking you to help us live in it.

11 Responses

  1. Raf April 23, 2016 / 10:25 pm

    Thank you so much Lisa for this! I am going to share this with my trusted tribe. Sadly I doubt that the people, family and friends of mine who don’t get it will even recognize that I am sending your amazing blog to them as a way to more clearly voice my hurt to their thoughtfulness and mean comments! Thank you for relating to others in a completely non self pitying way, but rather instead in a very clear, concise and full of respectful advocacy, to understand what we are going through. You are such a great resource, thank you for sharing your time and energy with us to help us. We really appreciate your intelligence and openness!

  2. Aaron Gomez April 23, 2016 / 10:27 pm

    Very powerful post, Lisa. Thank you for everything you do. Some of these have been said to me many times over with CRPS and now especially with Mast Cell issues. Life for us can change hour by hour, minute by minute. It’s not something we can control. With as much as we deal with, we don’t need to deal with that too.

  3. Kristy Csrry April 24, 2016 / 6:17 am

    Lisa, thank you very much for being a voice for so many. I really enjoy your blog posts and find them to be so encouraging and informative . You are a remarkable woman and you are making a huge impact in the life’s of many mast cell patients. You are a trusted resource that I often rely on. Your willingness to share your knowledge and your journey is greatly appreciated.

  4. Mel Badger Smith April 24, 2016 / 8:33 am

    Hello! Applause for this, we are all struggling.
    I understand that you’re mainly talking about the seemingly inoffensive triggers like pepper in soup but I really do think it’s worth putting the point across to the ‘normals’ that although many triggers don’t SEEM to harm them, they are damaging everybody on a subtle level. The incredibly high rates of cancer back this up… before you even get into things like extinction and contamination of aquatic life etc.

    This is the angle that I’m working on anyway… not sure how well it’s working out for me, lol, you seem to have more influence!

  5. Karen Neill April 24, 2016 / 10:51 am

    Oh, how true. I think, for me, the insensitive comments of physicians and other healthcare professionals can be the most detrimental. They often have the ‘power’ to make my life very difficult. I had to get to the point of starvation to convince physicians that I only had a few foods I can tolerate at all. I was 285 lbs last summer, but severely malnourished. I’ve had more than one health “professional” say “Well you’re clearly eating something.” I called them on it every time, but never got an acknowledgment that what they said was WAY beyond the line. I’m 180 now. At least they’ve stopped saying “people in western cultures don’t get that malnourished unless they do it to themselves.” Yup. I lived on milk, MiniWheats, ice cream and chocolate for two years. Plenty of calories, and motivating enough that I could face the inevitable pain. (If I never see another MiniWheat that would suit me just fine.)
    The difference in how I am treated astounds me. The assumption that I am not only ignorant, but stupid. The assumption that I don’t know anything about nutrition. I’ve had people comment on what was in my shopping cart. I’ve had healthcare professionals accuse me of faking it, making it up (YES, there is so something called MCAS), alter photographs of me when I am a lovely shade of crimson, etc. etc. Because I have lost the weight so rapidly, I’m really noticing the difference in how I’m being treated. I’ve had people congratulate me on my weight loss (are you serious?). Yeah, I didn’t eat for forty days, I had to go to a hospital 3 hours away to get care, it was a blast. I had lost so much muscle mass that I’ve been forced to crawl up the stairs. My potassium has been so low that I couldn’t walk unassisted. I’m not sure how you fake a BP of 66/35….or of 185/125, but apparently I masterful control of my BP. Ironically, I can tell what my BP is within 5 points either side, and I can actually move my BP 10 points up or down when it isn’t at the extremes. (Meditation. My mother taught me when I was small. I had NO idea how useful it would become.). I’m doing this for attention apparently. If I wanted to make myself look sick, and get lots of attention, I would not have chosen an illness that nobody has ever heard of, where I can’t eat, can’t go out to a cafe or a restaurant, can’t go to the theatre, made us put weather sealant around my bedroom door, and the kitchen door (Thank goodness our house isn’t open concept!). Tuesday. I’m flying to Minneapolis tomorrow, seeing Dr Afrin on Tuesday. I’m going to have to get an account at the print shop so that I can get volume discounts copying his report. I’ve also bought several copies of his book- hoping to get them in time that he can sign them. There are one or two people I am tempted to wait for, and give it to them directly. Especially those that haven’t seen me since August. I bet I could walk right past them, and they would have no idea who I was.
    Of course, I’m not about to go stalking doctors, and embarrassing them. That would have the opposite effect to what I want to acheive- I want them to open their minds, not shut them up tighter.
    But first, I should probably pack….
    Cheers,
    Karen

  6. Loren April 24, 2016 / 2:59 pm

    I can relate to this all to well.

    It’s really hard to find a balance with masto issues and have a life outside of it. It sort of sneaks its slimy fingers into every possible corner. It’s easy to feel trapped, and often times I do.

    I try to focus on things that don’t trigger my masto and make me happy. If I find something, I keep doing it. Eventually you find enough things to fill your day with that make you feel some security and some control. It’s not perfect, but it gives me a direction to move towards.

    People are inherently messy, and explaining this disease to them is like explaining complicated algebra to a drunk… It just goes way over most people’s heads, even doctors. This aspect makes it tough and adds a complicated dimension to this already complicated disease… Dealing with the people part of it. It’s hard to argue with intelligence though, and being a bright person helps.

  7. Sue Hargrave April 24, 2016 / 3:34 pm

    I love that you wrote this. Those of us with CIU get this ALL the time. Our list of responses are long. I love your responses – hysterical! Thanks for bringing some laughter into my day!!! How true all this is!

  8. christy kennedy April 24, 2016 / 8:57 pm

    Great post. Thank you and I’m sorry. Dealing with some of this here (me and my kids, who got extra twists from my mother-in-law’s line). My husband is an EVRN health specialist and was once asked to sample the office of a doc in the same hospital who is severely reactive to cockroaches. They’d done everything possible to clean the place but some construction was going on, sifting things up, so she was being exposed . . . but people didn’t believe her. They did a skin prick test, making the solution more and more dilute. She reacted to a 1 to 100,000,000 dilution. Pretty unbelievable and not at all in her head.

  9. KH April 25, 2016 / 10:15 am

    “I’m a pretty brassy woman. It is not easy to embarrass me or make me uncomfortable. Except in this way. Requiring the assistance of people I don’t know well and don’t trust is inherently disarming and leaves me vulnerable. When I have to tell someone that I can’t eat that/go there/commit time to something worthwhile, I have to steel myself. I need to be safe but I also need to feel like I’m not a burden and an outsider.”

    Exactly. Great insight. Thank you for writing this.

  10. Cyndi April 25, 2016 / 5:03 pm

    “I am actively engaged in a power struggle with my body pretty much constantly.”
    This so succinctly says it all.

  11. Deborah Ewing April 27, 2016 / 1:04 am

    Lisa
    Thank you so much for sharing your life with us. I have many moments that relate to this. Allergist who asked me what breast was evolved, Physicians at a hospital yelling at me that I am not having an anaphylactic attack, when my O2 levels drop 15 points and I am itching everywhere. I have been told I was a drug addict in the ER when my husband is trying to explain I am asking for epinephrine NOT dilaudid , it took 7 hours before the ER doctor took my situation seriously. I had another hospital experience when my BP was very low and my O2 levels were dropping the physician gave me Narcon , I went into respiratory distress and ended up in the ICU , now we have learned I cannot be a lone in a hospital, my husband stays with me. I could go on and on , you get to a place of not trusting and I am frightened at the thought of traveling because I could end up in a new ER. My life has become much smaller because of these fears and concerns. I don’t eat out much and if I go to a new restaurant I ask many questions before going. I am blessed to have found physicians that are teachers and they want to learn about my disease.

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