Anemia is the condition of having either too few red blood cells or too little hemoglobin. Hemoglobin is a protein found in red blood cells that transports oxygen. Hemoglobin is one of the hemeproteins, meaning that it has an iron atom in the middle of a structural ring. The iron allows hemoglobin to transport oxygen from the lungs to the capillaries, small blood vessels. Thus, anemia can result in less than enough oxygen in the organs. Iron status (how much iron a person has available for use) affects how well the body can oxygenate the tissues and generate energy.
When I was in college, one of my friends had an eye-opening experience when she went home on winter break.
It is getting better, if my current hospital stay is any indication. The word is getting out. More people have at least heard of mast cell disease, know that it can cause sudden, severe anaphylaxis, know that we react to things that most people never do and in ways that might seem strange. No one has made me feel crazy, accused me of being drug seeking or treated me disrespectfully. If they wanted to do something that wasn’t appropriate for mast cell patients, they called to confirm before proceeding.
I know it doesn’t always seem like it, but every time we present for medical care, we are fighting the good fight.
I always wanted to travel. From a very early age, I wanted to go everywhere, see everything, converse in other languages. I spent hours in the library reading about faraway places, whispering phonetically written phrases in strange languages. I never doubted I would make it everywhere I wanted to go.
I am a pretty brassy person. (I’m sure this surprises people who don’t know me in real life, as I am so shy on the internet.) I am not easily embarrassed and never have been. I have always been klutzy and loud, and I figured out early on that it was easier to just not be embarrassed by that. Self acceptance. I has it.
However, there is one thing that I get very embarrassed about, and I’m sure I’m not alone. That, my friends, is making a scene, particularly if that scene is health related.
And then there’s this other part, where I worry that I’m making a scene unnecessarily. Like I worry that I’ll call the ambulance and they’ll arrive and be like, “Oh, you’re fine! Why did you call us?” even though I AM ANAPHYLAXING AND THERE IS A CHANCE I COULD DIE FROM LOW BLOOD PRESSURE. Like I said, it’s not logical.
If any of you mast cell people told me you waited forever to give yourself epi, I would be all over you. I would send you pretty infographics about how you should use epi early and quote statistics about how often people accidentally stick themselves with epipens and live to tell about it. Because you should use epi early. It will help you. I know the party line AND I AGREE WITH IT but this fear of embarrassment thing is really strong. And I am sure I’m not the only one who feels like this.
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.