My brother’s experience with a rare medical disorder taught me a very important lesson–sometimes when people say they’re in pain, THEY’RE ACTUALLY IN PAIN.
As someone who personally suffers from anxiety and depression, my instinct is to assume that everyone else is suffering from the same things. That, if they got a good psychiatrist or psychologist who prescribed them an anti-anxiety medication or antidepressant, they’d finally be pain-free! Simple as that!
But my brother, Jake, was living proof that sometimes a person can already be suffering from depression and anxiety, yet still be experiencing very real PHYSICAL pain. That episode of “Mystery Diagnosis” on The Discovery Health Channel reminded me of that. In fact, I saved that episode on my Tivo for over two years. Let me tell you why:
After my friend Denise’s husband made that heartfelt plea on Facebook, asking anybody for ideas as to what could help alleviate his wife’s excruciating headaches, I thought to myself: ‘None of us had taken Jake seriously. All of us thought that his problems were psychiatric, not medical. And we were all wrong. What if Denise’s problems aren’t psychiatric? What if she is truly in pain?’ And I began to look at Denise’s migraines in a whole new light.
I thought to myself ‘Let’s just give her the benefit of the doubt and pretend that she’s in real pain. What could be causing that pain?’ And so I brainstormed, and that episode of Mystery Diagnosis kept nagging at me. I kept thinking: ‘You know what’s weird? The fact that both Denise’s sister and Denise’s niece are extremely flexible. I mean, they could be employed as contortionists for Cirque du Soleil! It seemed odd that several of Denise’s family members were naturally so unbelievably flexible. So . . . what if Denise has this Ehlers-Danlos thing that they had mentioned in Mystery Diagnosis?’
At first, I thought the idea was ridiculous. Incredulous. Seriously, what were the odds that Denise had a rare, almost unheard-of medical condition that a girl in some TV show that I had watched also just so happened to suffer from? A TV show that I had watched solely because my brother just so happened to suffer from yet another rare, almost unheard-of medical condition that the girl in this TV show also just so happened to suffer from? I mean, that’s just absurd!!!
But when I read some of the replies to the heartfelt Facebook post that Denise’s husband had written, I realized that my idea–by comparison–wasn’t so crazy after all (That should clue you in on the quality of some of the recommendations her husband had received). And so I called her. And I warned her that what I was about to tell her sounded like a long-shot at best, but I just couldn’t NOT tell her. It was just something that I couldn’t keep to myself, no matter how crazy the idea sounded.
So I told Denise about this Medical Mysteries TV show that I had Tivo’d, featuring a girl who had a Chiari Malformation (the same condition my brother had just had corrected via brain surgery) and a condition called Ehlers-Danlos, which was a connective tissue disorder. I had learned from the TV show that people with Ehlers-Danlos were typically extremely flexible, and since her sister and niece were both extremely flexible . . . mayyyyybe that was the cause of her migraines??? It all sounded so ridiculous, but Denise immediately acknowledged that she, herself, was also extremely flexible. She told me about a workout DVD that she would occasionally do at home, and when it came time to do the portion of the workout that involved stretching, she considered it a joke. Because every stretch that the instructor asked the viewer to do was a piece of cake for her. She couldn’t understand why those stretches were supposed to be so challenging because they were so easy for her.
When we got off the phone, I had a feeling that we were on to something. And when Denise called me back 10 minutes later, saying she had done some research on Ehlers-Danlos and was convinced that this was what she had, I was elated! I had cracked the case!!! I was a genius!!!
In hindsight, I realize that coming to terms with the fact that you have a rare disease like Ehlers-Danlos can simply be too much for the brain to comprehend. I mean, couldn’t the culprit be something less . . . horrible–like ‘food allergies or . . . food allergies or . . . allergies to cat dander or guinea pig saliva . . . orrrrr anything other than Ehlers-Danlos?-Please-be-something-other-than-Ehlers-Danlos!’ And so Denise abandoned the idea that Ehlers-Danlos could be the cause of her debilitating headaches and sought alternative treatments. As much as it pained me to hear her stories of this “amazing” clinic she had visited and all of these treatments that she was trying, I left the issue alone. I couldn’t tell her that I thought the “treatment” she was receiving was little more than a scam that preyed upon people who were desperate for any kind of relief from their chronic pain. I had to tell myself that I couldn’t imagine how hard it would be to accept a diagnosis like Ehlers-Danlos until you’ve exhausted all other possibilities. And to Denise’s credit, she exhausted all other possibilities . . . and still found herself in excruciating pain, without any explanations as to its cause.
I begged her for months to watch that episode of Mystery Diagnosis, convinced that if she would just watch it . . . ! I scoured the internet for any video clips of the episode that I could email to her, and I came up empty. Of course, the episode was still saved on my Tivo, but with my health at an all-time low (a post for another time), having people over to watch TV was as low on my list of priorities as having a root canal or scheduling an IEP meeting.
Then I had a brilliant idea (and by “brilliant”, I mean “idiotic”): Since I wasn’t going to be able to have Denise over my house any time soon to watch this episode of Mystery Diagnosis (due to my own health issues), and since I didn’t find any clips of the episode online (when I checked months ago), I’m going to tape the entire episode, in segments, on my camera. And then upload each segment to Youtube. Then, I would email Denise every segment of the program so she could–at long last–watch the show and realize that she did indeed have Ehlers-Danlos.
So I gathered my “high-tech” equipment: A bunch of Jack’s toys stacked on top of one another formed a “tripod”. Then I precariously placed my digital camera on top of my homemade “tripod”. I then placed some folded-up gauze underneath the zoom lens to keep it focused on the TV (instead of the floor). In order to upload the entire episode of Medical Mysteries , I had to film it in five separate segments. Then I had to upload each segment onto Youtube, which took for-ev-er! THAT was how determined I was to make sure Denise saw this TV program.
Before sending Denise the Youtube links to all five segments of the episode that I had uploaded with my make-shift recording equipment, I did a Youtube search for that particular episode of Medical Mysteries (something I should’ve done before I built my tripod-o’toys, propped up my camera with gauze, and uploaded each segment to Youtube). In my defense, I had done the same Youtube search just a few months earlier, so why would I expect that someone would have uploaded such an obscure TV episode in the interim?! Well, surprise surprise–the ENTIRE episode of Medical Mysteries was now available on Youtube. I was both unbelievably ecstatic and unbelievably irritated. I set aside my irritation and texted Denise the Youtube link. At the time, she was in bed suffering from a horrible migraine. I BEGGED her to watch the Youtube clip. I groveled. I whatever-other-words-are-synonyms-for-begged-and-groveled. And she watched it. And then she had her husband watch it. And she immediately texted me back: “Oh my word, that’s totally what I have.”
It took several more months for Denise to receive a definitive diagnosis of Ehlers-Danlos Hypermobility. But at least she knows the reason behind her pain. It doesn’t mean her pain is gone. It doesn’t mean her pain has lessened. Even slightly! But a definitive diagnosis provides a ray of hope. Because you no longer have to search for the “why?” anymore; now you just have to search for the “what next?”
Unfortunately, the “what next?” is going to involve some trailblazing on our part, because the medical community basically dismisses patients with Ehlers-Danlos simply because they don’t have answers. I don’t think any competent doctor wants to dismiss a patient in pain; I think a competent doctor does so when he truly doesn’t know how to help that patient. And then he moves on to patients he knows he can actually help. So now our mission is to either 1) find a doctor who knows how to treat patients with Ehlers-Danlos, or 2) educate a doctor about the condition, in hopes that he can provide treatment.
I hope that this post will eventually have a follow-up with a happy conclusion–that after years of agony, Denise is finally free from debilitating migraines! But only time will tell. In the meantime, don’t ever stop looking for answers. Don’t ever stop researching. Whether it’s for your own health or for the sake of someone you love, DON’T EVER STOP. Don’t ever stop.