Again, I’m inspired by something another blogger said. You see, this blogger is on the other side – she’s the “patient” or the one with EDS (Ehlers-Danlos). I realize it must be difficult to be on that side – where the person who’s involved with you is not “handicapped” by a debilitating illness. I’m assuming that she sometimes feels somewhat guilty (read on), and on occasion perhaps even like a burden to the people who love her or are close to her.
I get that because my soon to be 17-year-old daughter feels that way at times. My daughter is also on the other side. Because she is my child, I have arranged my life and my career around her needs. She knows this and any little struggle on my part disturbs her or makes her feel bad. But really, on my side of the fence, what truly makes it difficult, is seeing someone I love struggle with an illness that is misunderstood by all and sort of “silent”.
It’s difficult because the interactions with most friends, strangers, family members, and healthcare professionals are a total burden. These interactions are tiresome and exhausting.
That being said:
How many times will I have to explain to everyone that she can’t sit for long, or can’t walk that far, or can’t stand in line, or can’t wake up?
How much “proof” will one need to realize that there is something there underneath these symptoms?
And NO, the person I love – who is making all these efforts in front of you – is not faking or making this up.
These “crazy” interactions are what makes it difficult. It has NOTHING to do with the person I love and who I choose to take care of or be with. The burden are the people on the outside of the circle – the ones who have no clue and simply choose to close their eyes because it has nothing to do with them or they don’t understand and are not “curious” enough to want to know. And believe it or not, I go through that on a near daily basis, and sometimes more than once a day.
And this is what it’s like:
Last week, my daughter was scheduled for a stress test. The doctors (not all but some) and the other healthcare workers involved are trying to prove that there is nothing wrong and that it’s all in her head. The stress test was the last of a series of test to evaluate the possibility of various cardiovascular problems associated with EDS. This last one was the most challenging because I know what it’s like for my daughter to stand and the idea of her having to walk on a treadmill was even scarier because on a good day, she can barely walk 20 meters without having to sit down and that is at a very slow pace.
The test was done in the presence of an internal medicine physician who people refer to as “the” cardiologist. As he was standing next to my daughter who was evidently struggling on the treadmill, my heart was broken. Her feet were dragging from the start. I can still hear the “squish squish” sound of her running shoes dragging on the surface. While she was walking, she actually reminded me of someone with cerebral palsy. You could tell that something was totally wrong with her joints – or the way her body moves.
In the end, the so called cardiologist told me her ultrasound was normal (one of last week’s test) and that all he could see was “a completely out of shape person at a 70-year-old endurance level”. And then he said “I’m not here to give you a diagnosis”, which I think he actually repeated three times (I guess someone told him I had invented a diagnosis and I was expecting him to confirm it). My voice quivered as I replied “I know” – I was still hurting from seeing my daughter struggle. When I attempted to explain that she was like that as a very young child although she was more mobile he replied “You can say whatever you want, this comes from her being totally out of shape”.
When you go back with that kind of “vibe” – the vibe where they are silently transferring the wrong message out there because they know nothing and are not interested, this is when it becomes difficult. The trick I guess is to go home and not think about it.
On my side, I have to remind myself not to stoop down to “their” level because really, they are the ones that make it all so important and so difficult. So what if my daughter can’t stand? Just give her a damn chair. I have to let it go – only then can things become easier.