I had a conversation with one of my friends many years ago about kids worrying about things. I don’t know why I remember this so vividly, and I don’t remember why we were talking about it. I remember him saying, “I think no matter who you are in life, you have your top five problems. And you worry the same way about those problems, no matter what they are. So if a kid is worried about a spelling test and you’re worried about losing your house, the amount you each worry is the same.” I started assuming that everyone was worrying about something and even if it seemed insignificant to me, it was important to them. It has made it much easier for me to be kind to people who frustrate me.
I remember this conversation when I observe interactions in the mast cell community, which largely happen online. Communities like this have some weird dynamics. Sociologically, it’s interesting; as someone occupying one of these microcosms, it can be annoying. Venting about your symptoms can create a weird situation. Some people will relate to you and will say so. Some people will relate to you, but feel guilty saying they relate because they feel like it will offend those with more severe disease. Some people will think you’re whining and don’t have it that bad and should get over it.
It is okay to vent. You do not need to feel guilty if your symptoms are not as bad as someone else’s. You do not need to feel guilty if you have support. You do not need to feel guilty if you have good insurance. You having these things does not change the realities for others who have worse symptoms or circumstances or whatever. The strength of our community is that we understand each other and support each other. In exchange for getting mast cell disease, you also get to complain about it sometimes to people who get it.
When I sleep, I move through my dreams in a whole, disease-free body. I don’t have a colostomy or a central line or surgical scars. I can hear and I never puke. When I wake, I am often surprised to be in this body, this damaged and painful vessel. I am forced to acknowledge and accept that this is real. On some days, that’s really, really hard for me. I wake up to pain and vomiting and I pull my blanket up over my face to be alone with my tears for a little while.
So when people say things like, “You need to get over it,” all I can think is: I’ll never get over this. I live my life, and I like it, but I will never get over what this disease has done to me and my life. I will never get over who I could have been if not for mast cell disease.
Because I like the person I am, but the person I was trying to become – I liked her, too. She’s who I think about when I’m under my covers on those mornings when I don’t want to believe that this is still real. I think about all the extraordinary things she could have done, and how the only extraordinary thing I’ll do that day will be to get out of bed when I don’t think I can.
You can’t get over something that is still happening to you. You can only learn to live with it.