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Lost in space

One of my most deep seated irrational fears is being lost in outer space. Being lost, alone, surrounded by this vast expanse of loneliness – that is the fabric of my nightmares.

“If you die in space, your body just keeps moving until something hits it. Then the pieces keep moving. It doesn’t decompose,” I remember my middle school science teacher telling me. My revulsion was immediate and visceral. It seemed so unkind that space didn’t even offer this last kindness, the ability to disappear and be forgotten. You would be all alone, with no chance of help, and when you die, your body will memorialize this helplessness and despair, forever.

It feels hollow and soundless when I think about space – the ultimate loneliness. Sometimes when masto is too much and I am tired of living in a world that isn’t safe for me, I hide in bed with my feelings, and they are hollow and soundless, too.

A woman I sort of knew killed herself this morning. She had a young son with mastocytosis, and I knew her in the way I know many masto parents – I answered questions for her. I knew very little about her or her family or her own poor health. But her death has started a larger conversation about support that I think needs to be had, and I think we owe it to this woman to have it now. Because even if lack of support was not the reason she ended her life, it is definitely the reason many people in our community have contemplated doing the same.

Let’s pretend that you, my audience, are healthy. Let’s pretend you don’t have any chronic health issues. You’re walking down the sidewalk one day, listening to music on your Iphone and get hit by a car. You are taken by ambulance to the hospital and are relieved to find out that while your leg is broken, you are otherwise okay. Your leg needs some surgery and a cast and you will be good as new soon. You have your surgery and you go home.

Except what if eight doctors looked at your xray and told you your leg wasn’t broken but you could feel the bones shifting? What if you couldn’t bear weight on it, if your pain was excruciating, but they insisted you were fine? What then? What if you went home and stayed off your leg until you could figure out why it hurt only to be called lazy and lucky to be able to stay in bed all day? What if your spouse was upset that your leg hurt too much to move around the kitchen and cook dinner? What if your family members told your kids that your house was dirty because you were lazy and making up the pain in your leg? And what if you find a doctor who sees something on your xray and agrees to work with you, but your family tells people this was all your fault for going for a walk that day or listening to music or being outside? What if the people around you not only denied your condition, but actively refused to support you? What if they made you feel guilty not being unwell as if your sickness was your fault?

This is what life is like for a lot of mast cell patients. I hear from patients all the time that their spouse doesn’t believe they are really sick. I hear that their mother told their kids that they are lying. And for parents of sick kids, I often hear that one parent won’t acknowledge or learn about their kids’ disease. It is discouraging and horrifying and dangerous. Because just like ignoring a broken leg won’t make it heal, pretending someone doesn’t have mast cell disease won’t make them any less sick. It will just make them more alone.

I’m fed up with watching people I care about struggle with family members, friends, coworkers, etc, who feel that acknowledging and accommodating their disease is too much to ask for. I’m tired of my friends crying for support when they are alone in the ICU, going into shock in their home, because their family members won’t help them. This is abuse. No one deserves this.

To everyone who has a chronically ill person in their lives: If you are not helping, you are hurting. When you tell us we are faking or being dramatic or exaggerating, you are chiseling off little slivers of our being that we will never get back. You remind us that we are not worthy of help and sympathy in your eyes. You force us to stop asking for your support, until sometimes it becomes too much. Sometimes when you scream for so long and no one cares, suicide can seem like a relief.

I am very lucky to be well supported now, but I know the pain of begging someone to take care of you. It feels like a great dark expanse, weightless, silent and endless.


Kvetching Circles; or, How to Support Your Favorite Sick Person and the People in Their Lives

My illness doesn’t just affect me. Everyone who cares about me is affected by my health and experiences joy, anger and grief along with me. I think about this a lot. Honestly, I am a lot more worried about the effect my disease has on others than I am about the effect it has on me. It’s just what happens.

I sometimes experience people saying things in an attempt to be helpful, or show solidarity, that can be hurtful or counterproductive. When I try to draw clear lines about what is appropriate/not appropriate, I sometimes get the response that “this isn’t just about you.” You’re right. It’s not. But blaming me for my chronic illness isn’t going to help either of us, and instead makes me feel like garbage.

I have a lot more to say on this topic, but today I thought I would write a post about how you can best be supportive of not only your chronically ill friend/relative/mail carrier, but also the other people in their lives.

I read something a few years ago about “kvetching circles.” I had forgotten about it until recently. It articulates very simply what I have been trying to explain for years. It is designed for someone with an acute health crisis, but can be applied to pretty much any situation in which one person is centrally affected, like chronic illness.

Here’s how it works:

1. Draw a circle and write in it the name of the person primarily affected. In my case, that’s me.

2. Draw a larger circle around the first circle and in it write the names of the people next most affected. In my case, that’s my parents and sister.

3. Do this concentric circle thing as many times as you have to. I would say circle three is my extended family and closest friends. (I’m fortunate that there are so many people in this circle.) Circle Four is the rest of my friends. In the age of social media, I would say Circle Five is the people I have found care about me and keep up with me via FB but aren’t my friends in real life.

4. You are allowed to vent about my illness to people in your same circle or in the outer circles. So, I can vent to anyone about my illness. My parents and sister can vent to anyone except me. My best friends can vent to anyone except my parents and sister and me. Make sense?

5. There are two rules of kvetching circles: comfort in, dump out. Complain to people in outer circles, comfort those who are in inner-more circles.

When we are discussing my illness, if you ever start to say “this isn’t just about you,” please, I implore you, STOP. There is no coming back from it. I have had to draw hard boundaries as part of my self-care with mast cell disease, and refusing to tolerate shit like that is part of it. It is a hard stop. I don’t need to be reminded that this is hard for you. It is hard for me, too.

Let me know if you have any questions about what is appropriate/inappropriate to say to someone with chronic illness. I’m not easily offended about this stuff, honestly, but I know many people with my disease who run into issues with this a lot.