It comes on in a rush, and it makes me feel like a Sweet-tart — you know, one of those candies that you bite into, it grabs the sour corners of your tongue, and it just dissolves…. The overwhelming dread and tears begin to descend, sometimes I just collapse. It takes a good cry to get over it.
Then I pick myself up, with a renewed sense of making sure NO ONE else will ever have to go through that.
It’s PTSD — Post Traumatic Stress Disorder — which comes over me once or twice a year, and is a result of my misdiagnosis of three years ago. A trigger, in the form of a sad movie (The Family Stone) or someone else’s misdiagnosis story, or, this week’s trigger, which I’ll describe in a minute…. and I just melt down.
This week’s trigger: I received an email from a gentleman whose wife has been diagnosed with the same, very rare, very aggressive lymphoma I was diagnosed with. It’s called SPTCL, Subcutaneous Panniculitis-Like T-Cell Lymphoma. Sometimes it’s abbreviated to STCL. It’s extremely rare: in 2004, it was reported that only 100 cases had been reported worldwide in the past decade. And because it’s so rare, it’s almost impossible to find anyone who knows much about it.
I can only assume these melt downs are a result of the intense stress over the course of the three months it took to figure out I had been misdiagnosed. The stress was a result of not only the medical aspects — the tests, the doctor appointments — and the fear of dying from it — remember, I was told I would be dead in six months unless I began chemo immediately — but also the fact that I was making sure almost no one knew about it, too.
And let’s not forget that I was battling the oncologist, who tried to stymie my attempts at double checking (“what you have is so rare, no one will know anymore about it than I do!”) and got quite upset with me when I told him I needed to know more before I would commit myself to chemo treatments.
Relief didn’t sweep over me immediately when I confirmed I’d been misdiagnosed. In fact, even though I knew I wasn’t going to die, and even though I knew I didn’t have to suffer through chemo, at that point the stress was so intense, and the anger was so unyielding, that it took many months to get beyond it. Evidently this week’s reaction means I’m still not there.
But to you, the patient who needs to be empowered, or the advocate who is trying to figure out how to navigate our dysfunctional American healthcare system, there is such an advantage to these meltdowns! And for that reason, I think it’s OK if I never DO get beyond them.
With each episode, I strengthen my resolve to help. And I can’t tell you how satisfying it was to be able to offer some solid advice to the gentleman who contacted me about his wife’s diagnosis of SPTCL.
I told him to get at least a second opinion and maybe more. I told him to contact Dr. Elaine Jaffe at the National Institutes of Health, the hematopathologist who eventually confirmed I did NOT have SPTCL.
I told him how to get in touch with the doctor who helped me, and explained that even if I DID have SPTCL, chemo would not be indicated (radiation would be the answer.)
And I told him I would keep them both in my prayers. With any luck, she, too, was misdiagnosed. Seems like an odd wish, I’m sure. But it’s possible she had the benign, non-life-threatening condition I was diagnosed with instead. (Although I actually think my re-diagnosis was incorrect as well — another story for another day.)
Bottom line? I wonder how many of these diagnosticians have ANY sense of what their mistakes can cause. I wonder if they have ANY idea of the long term ramifications.
In my case? Turns out that in spite of the meltdowns, it was the best thing that ever could have happened to me. That misdiagnosis has given me a sense of purpose because I’ve turned it into something to help others. It caused me to re-evaluate my priorities. It caused me to make choices differently. It has helped me trust my intuition even stronger than before. And my devotion to spirituality is more intense than ever.
Revenge, in the form of pro-activity and good patienting evangelism, is sweet. And if the cost is just a meltdown or two along the way, I’m happy, these three years later, to pay it.
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