When You Feel Discounted and Ignored by Your Doctor...
It was November 7, 2017. I was 45 years old, my husband was at my side, and I heard the words, "Ms. Louiselle, you have Parkinson's disease".
Living with two diseases
But here's the thing: Three weeks earlier I was diagnosed with an autoimmune disease. But I don't really have a name for that one. Well, I do, but the name is undifferentiated connective tissue disease. That's nothing more than a really big name for relatively little information. Basically it means that I have an autoimmune disease...or two, or three, or four...but lab results are inconclusive and they can't decide or agree upon a particular diagnosis. They feel it is likely Sjogren's Syndrome secondary to lupus.
My Parkinson’s disease is completely unrelated to my autoimmune disease, and neither one knows how to play well with others. I feel as if each of the diseases exacerbates the other. Most days, I have no idea which disease is causing which symptoms, and I don’t know which care provider to even begin to voice my struggles and concerns to. Neurologist, primary care physician, rheumatologist, therapist...? I don't know.
I was talking with someone about this, and they asked me if it really mattered which disease was causing which symptoms. Well, not really, I guess. That's how I responded to that question on the spot. But I think that I only responded that way because that's how my providers are making me feel right now. But the reality is, in my non-medical-degree-but-living-every-day-with-these-diseases opinion, it does matter.
And I. Am. Frustrated.
How do I know which symptom is linked to which condition?
I do get it...it is challenging. Many of the symptoms I experience are shared by both of the diseases. But, not every single one of them. Some of them are disease-specific. And when I bring up a symptom that is maybe not a "cardinal symptom" of one of the diseases, I feel disparaged.
The new pain, numbness, and weakness in my upper arm...? The neurologist says that's not typical of Parkinson's so it must be autoimmune...talk to rheumatology.
The insomnia that has been plaguing me for months now...? Also, probably not Parkinson's...see what your rheumatologist has to say.
My startle reflex that has gone into overdrive...? Nope, not my area...talk to rheum.
Nevermind the fact that just about every Parkinson's support forum I visit reveals dozens of responses to dozens of threads addressing these exact issues. But, never one to "rock the boat"...I don't dare question the "expert". Right?
So I call to schedule a rheumatology visit to discuss these symptoms with her. And guess how that goes? Hmmm...that type of arm discomfort? That really isn't something we see with an autoimmune disease. You'll probably get further if you consult with your neurologist.
And the insomnia? Probably a side effect of one of your Parkinson's meds. Try talking with your neurologist. And just like that, I'm neither provider's "problem". Appointment over, thanks for coming, see you in 2 months...unless of course, you're experiencing new symptoms.
Feeling invisible with Parkinson's
I feel invisible and unheard. And I deserve better. I know there are others like me out there. And you deserve better, too.
And, THAT is why I'm here. And THIS is why I write. To join with you. To fight alongside you. And to make sure you, and I, will be seen and heard.
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