What It's Like to Receive 2 Chronic Illness Diagnoses in One Day
Four years ago my neurologist diagnosed me with hypermobility Ehlers-Danlos syndrome and multiple sclerosis (MS). On the same day. During the same visit.
Me being the stubborn, obstinate, single lady that I am, I refused to believe that I could possibly possess both of these obscure diagnoses at the same time. I refused to believe that after 30 years of being looked in the face and being told a plethora of times, “I just don’t know,” “Your tests results didn’t show anything significant,” or my personal favorite, “You’re just depressed,” that it could be my reality that I had not one, but two actual, physiological diseases threatening to take my mobility, and my quality of life, all at once.
I justified my denial in the simplest ways. It was almost too easy. You see, I could see the physical manifestations of Ehlers-Danlos syndrome. I could feel my joints pop, slide, dislocate and sublux with every step I took, every morsel I chewed. I could see the swelling in my knees. I could hear the crepitus in my joints after years of daily micro injuries. I could tell myself that, due to multiple herniated discs, I didn’t always have sensation in my hands. And to the contrary, sometimes I had horrific sensations in my legs or face.
It was just too easy to set the diagnosis for multiple sclerosis aside, and tell myself every single day that it was just some horrible mistake.
I wouldn’t argue with the neurologist. After all, this was the physician that had given me answers. He’d given me, with no amount of fanfare or flourish, the one thing I’d searched for, that I’d craved with every fiber of my being since I was old enough to know that it’s not normal to be in pain all the time. I mean, that had to be wrong, right? I hadn’t signed up for a two for one special. Ehlers-Danlos syndrome created plenty of challenges that I was going to struggle with.
Sure, he’d given me what I’d wanted. He’d thoroughly and patiently explained the test results and all the reasons why. He’d recognized, with a fair amount of disbelief, the relief and seeming joy I felt at being told that I wasn’t “crazy.” These feelings, they made it that much easier to just set the diagnosis for MS aside and focus on the Ehlers-Danlos syndrome.
After all, you can take steps to prevent damage to your cartilage. You can invariably prolong the inevitable when I comes to connective tissue, or so I told myself over and over again. You can take medications to help control your heart rate and your blood pressure for the dysautonomia . You can work your tail off in physical therapy and see the results after a time.
There were so many days when I contributed the searing pain that I felt in the entire left side of my body to Ehlers-Danlos syndrome. There were so many times that I told myself that it was just nerve damage from my perfectly disastrous excuse of a spine, also from the Ehlers-Danlos syndrome. When I dropped a cup because I couldn’t feel my hand…Ehlers-Danlos syndrome. When my vision was suddenly blurry…it was simply dysautonomia from, you guessed it – Ehlers-Danlos syndrome.
All these things weren’t necessarily untrue. That’s the tricky part. These things that I was telling myself were not wrong.
Unfortunately, no matter how sure I was, the MS was still there. It was waiting patiently for me at the end of every day, silently, and all but invisible.
This has been a rough year for me. Not to say that we don’t all have our demons, but for me, this year I began to find it harder and harder to battle mine.
It began to become harder to just slap an “Ehlers-Danlos syndrome” sticker on every symptom I was manifesting. Doubt began to creep in and tangle with my web of certainty that I’d so carefully crafted. And slowly, my air tight wall of denial began to crumble right before my eyes.
When I started having the telltale “foot drop” on my right side, I became infuriated with my body. I was indignant at it’s betrayal. Due to the Ehlers-Danlos syndrome, I’d experienced a tear in my iliotibial band in my left leg earlier in the year. This meant a fair amount of time was spent compensating for the injury by holding most of my weight on my right leg. It should have been stronger. It should have held up. Apparently, I was attempting to place the weight of the world on that, now useless, right leg and when it gave up, so did I. But only for a time.
No longer do I spend an inordinate amount of energy trying to convince my body and mind that “I can’t possibly have MS.” I don’t have the time. I’ve noticed in recent weeks that I’ve began to count time in moments instead of days, weeks or years. Not in a “I don’t plan on being here much longer” sort of way. More a “these things bring me joy and that’s OK” sort of way.
All of this is just to say that I see you, MS. I see you and I don’t plan on giving up or giving in. I may whine and cry and sometimes even rage at the pain or loss of function, but I’ll be doing it with my eyes wide open from now on.
I see you, MS. I may have days where I can’t walk without help – or at all. I may have days where I want to scream because there is no relief from the pain I endure. I may, in the very near future, have a new set of wheels as walking for any sort of distance has become a challenge. I see you MS and, to quote the infamous (if not cliche) “Labrynth:” “… you have no power over me.”
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Gettyimage by: Darrin Klimek