Yesterday I got myself really stressed out and had full blown anaphylaxis. I used my epipen and pushed meds and sulked on my couch. It was a sulking kind of day.
Today I woke up with sore, weak muscles. My hands shook as I made coffee in the dark, my eyes too sensitive for light. My skin burned. I burnt my tongue on my coffee, swallowing a handful of pills. I rolled my eyes when I confirmed that I still have a lower GI bleed. I hooked up another bag of IV fluids and went back to bed. I thought about some recent events and how low they had me feeling. I thought about the danger to a community that doesn’t get all the information they need.
But tonight I got hundreds of messages from people supporting me and thanking me for all I do. It was really, really humbling and amazing.
There needs to be a safe place to vent about your experiences and receive support from people who understand you.
There need to be multiple reliable sources of information, with cited sources, readily accessible by people who need it to make decisions.
There needs to be security in the community that you are among honest people who do not seek to manipulate others.
There needs to be certainty that when you entrust someone with your personal health information that they will not betray that confidence.
There needs to be an understanding that people who do what I do exist to serve our community, not the other way around.
There needs to be democracy. There needs to be a way for people to disagree without retribution.
There needs to be hope. People deserve to know that it’s not hopeless.
I have mentioned before that a lot of people tell me their secrets. They’re not always health related; I seem to be the recipient of quite a bit of gossip these days as well. I told a mast cell friend of mine recently that I didn’t know why people told me these things.
She responded, “It’s because you’re our leader,” and I shivered.
I don’t think of myself as being a leader. I think of myself as being a sick woman who is trying to help other people be less sick and more heard. I am just another mast cell patient. I am just like all of you.
But if you think of me that way, then I want you to know this:
It bothers me to see so many scared people when we live in an age of so much hope for these diseases.
This is not rhetoric. We are seeing real results with new medications and are diagnosing people earlier. Just twenty years ago, mastocytosis was usually found on autopsy. How amazing that now we can be treated and live with this, even when it doesn’t feel like a blessing.
I believe we won’t always be sick. I believe that if just twenty years ago, very few could live with mastocytosis, that in another twenty, we’ll all take a pill every day and be free. I really, really believe this.
None of the nonsense that happened this week matters. If I can give people hope, it is worth it.
Hope is what’s important. I have it. So should you.