No one expects to become ill. Well, okay, I know lots of us harbor anxieties that we will end up with the diseases and conditions that seem to run in our families. Both my grandmothers had breast cancer, so in the back of my mind, wiggling about like a little worm, is a subcutaneous worry that I might end up with breast cancer too. But I’m guessing that most of us, if we’ve enjoyed nominally good health in the past, go about our days thinking that we’ll have decent health tomorrow too.
And then suddenly, perhaps because of an infection, or gradually, like the diminishing daylight in November, we find ourselves with a diagnosis. Even if a friend has warned us—Julie, if you keep going this way, you’re not going to see your kids through high school—we’re still shocked when a doctor tells us that we have a chronic illness that is difficult to diagnose and has no known cure. And then, six months later, we’re even more distraught when she tells us that, based on our blood work, that chronic condition is actually caused by another, underlying chronic condition with no known cure and about which little research is being done.* So we’ll just have to experiment with symptom relief for as long as it takes. Meanwhile, rest. Stop working (not that we’ve been able, for some time, to work at all). Accept help from others (but we are Midwestern! And German/Norwegian!).
And so, without any preparation, mental or physical, we find ourselves in the ranks of the chronically ill, and the world as we have known it, indeed our own bodies as we have known them, are whisked away into a past that suddenly seems more golden than it did when it was the present.
The disorders I’m dealing with are complicated and almost entirely unknown by the general public. Trying to explain them to family and friends is exhausting and discouraging. So, since writing, for me, requires less effort and brings greater satisfaction than talking, I’ve decided to share what I hope will be a healing journey here in this blog.
If you’ve happened upon this page, feel free to read future entries, or not read them. We live in a busy world; following a blog is a big ask, and it’s just not many people’s cup of tea. All I do ask is that if you respond in the Comments section, please be kind. Kindness is healing for all of us.
Good night, and joy be with you all.
Julie
*When I originally wrote this post, I was under the impression that ME/CFS is caused by Mast Cell Activation Syndrome (MCAS). I have since learned that MCAS is more likely a comorbid condition with ME/CFS.