Connected

I talk a lot about the hard stuff.  Mast cell disease is a bummer.  Some days are easier than others, and I still enjoy my life, but it’s still a bummer.  Everyone with mast cell disease deals with insurance frustrations, physical and emotional stress, and feelings of isolation and being misunderstood.  These things affect my life a lot, so I write about them.

But it’s not all bad.  And I don’t just mean my life, I mean the experience of living with mast cell disease.  So let’s talk about that tonight.

I sleep really poorly, which generally means I’m up all night and guaranteed to wake early.  When I’m working in the office, I always arrive early and have a pleasant morning getting organized before everyone else arrives.

I’m allergic (true IgE allergic) to dust, so my apartment is always pretty clean.

One of my goals in the last few years was to become a better cook.  When you suddenly find yourself with a drastically reduced diet, you get pretty creative with spicing and cooking techniques to give flavor to what you’re left with.

I am really good at yoga because of my hypermobility.  (EDS, not masto, but still.)

I am unbelievably organized. 

I feel like every day is a logic puzzle that I have to solve.  But I like puzzles, and when I get through my day and did everything I had to, I feel like I solved something.

I am direct at expressing my needs and concerns in pretty much all aspects of my life. 

I no longer get very upset about a lot of things that used to really bother me, like the weather or the behavior of other people. 

Chronic illness can also be really funny.  The ridiculous things my body does on a daily basis are comedy gold.  Anytime I interact with someone who doesn’t know that I’m sick, I’m pretty much guaranteed to walk away with a funny story. 

There is this amazing thing that you get when you are diagnosed with a rare disease – your community.  I was diagnosed for quite a while before I found mine, but now I can’t imagine my life without all of these people.  Even though we are different, we have taken this same core journey.  There is a lot of power in this common history.  There is such comfort in having someone say, “I know what that’s like,” and knowing that they do. 

The relationships formed by this camaraderie are very intimate and very intense.  You share your triumphs and your misery.  You say things and you’re not judged.  As time goes on, you suddenly find yourself with this ever evolving family of people who understand you and validate you.  They are your people.  They are the gift you get in exchange for all the hard stuff.

I have bad days, a lot more now than I used to.  When they come, it’s hard to focus on anything but the pain.  But then one of my people will reach out to me.  It is like having my hand held from across the thousands of miles between us. 

And just like that, I remember - we’re connected, and I can never be alone in this.