You would think it would be obvious to me, of all people and after all we have dealt with over the past 5 years. It should be obvious that you can’t ‘see’ an invisible illness, right?
And it is, of course. As a parent of a medically complex teenager who lives with Ehlers Danlos Syndrome and POTS and a host of other things that haven’t quite been given a label, I am too familiar with the concept that my kid is ill in ways that even the doctors can’t see. I have felt the questions behind the polite smiles that come after I have explained Emily’s medical issues, when that person catches sight of her smiling and laughing and looking oh-so-normal. I see the doubt that dawns when well meaning friends and family wonder if she is really quite as ill as I claim she is. Because, how can she smile, laugh, walk, play if she is really in so much pain?
I understand those doubts, even when I am annoyed by them. It is all part of the process of spreading awareness and educating people who are not trying to be mean but are facing the equivalent of a calculus equation in a social interaction. If you don’t live with chronic illness, you just don’t get it. I understand that. I have no problem explaining it over and over and I have been a willing advocate from the moment we put a name to her symptoms.
And I have never once, not for a single moment on this journey of 5 years, doubted what I could not see. I have been bemused, but I have never doubted her experience. I think that is because it really isn’t invisible to me: I see the pasted-on smile, the pallor, the way the pain shadows her face as she tries to ignore it, the blank look and glassy eyes as she starts blacking out and I see her energy draining like a low battery as she fights to appear normal. It isn’t invisible to me, even though it is to everyone else. In fairness, I know what all of those signs will result in: utter exhaustion and perhaps days of recuperating from what any other teenager does all day long, every day. I do not doubt because I see it when others do not.
I get this no-man’s-land of invisible illness, really I do.
But, even a veteran like myself can be reminded how insidious these hidden conditions are in a simple, matter-of-fact conversation…
My daughter’s CRPS (Chronic Regional Pain Syndrome, also known as Reflex Sympathetic Dystrophy or RSD) has returned and with a vengeance that is frightening: it has spread to her whole body in a couple short months. If you are unfamiliar with CRPS/RSD, it typically appears after a minor injury or surgery and is extremely painful. It is the most painful condition known, rating a 46.5 on the McGill Pain Index, considerably above first time, unprepared childbirth at and cutting off a finger. Think filling your limb with lighter fluid and setting it on fire and it never burning itself out. There are some visible symptoms that go along with it but, of course, you cannot see the horrific pain.
She had this once before in her foot 5 years ago. It was excruciating. She couldn’t bear to wear a sock or shoe and couldn’t walk on it. It actually put her in a wheelchair. The whole concept of chronic pain was relatively new to her then. She had been in a lot of pain from EDS for months but the CRPS pain was so extreme and so horrible that she couldn’t ignore it.
Fast forward to this new round of torture. I believe her. 100%. I am her biggest advocate and she has my solemn promise that I will never stop seeking treatment for her. But, it occurred to me that, perhaps, compared to the first round of CRPS, this round was just very unpleasant because it was all over, instead of just in her foot. Because she informs me of how things feel but she doesn’t complain. She doesn’t cry or scream or shout about it. She pushes through, knowing that she can’t give in to the pain and that staying in bed is the worst thing she can do. In short, she doesn’t show her pain, even to me. When she talks about it, it is typically very factual, informative and brief.
So, I asked her, the other day, as we walked together, “Is this pain less than it was the first time?” I thought I knew the answer because, logically it had to be, right? And, honestly, because I wanted it to be so.
She thought a minute, shrugged her shoulder and quietly said, “It’s worse.” She walked on, leaving me stuttering and a bit flabbergasted. I caught up with her and said, ‘But, last time, you couldn’t walk. You couldn’t stand a shoe or even a sock on your foot.” I remember staring dumbly at her shoe encased foot, as I said this, trying to make my brain understand. Again, she just shrugged and nodded and walked on.
And my brain caught up. She has endured so much pain over the past few years. It has been managed but it never goes away. When you live with constant, severe chronic pain, you learn to bear the unbearable. That first round of CRPS was unbearable to her, but, now, years later, she is prepared to face much worse, stoically and with a poise that belies her age and situation. So, the answer is, of course, yes, it is worse. Yes, she can wear a shoe and walk, because she has learned that she has too. She understands that this pain is lying to her: it is not a signal of damage so she must push through if she wants to defeat it.
It doesn’t matter if I can see it or if anyone else can see it. It is real.
But, if I, her biggest believer and advocate, can be confused and deceived by the false appearance of ‘”normal”, of course, other people – friends, family, doctors, therapists – can be deceived as well. Some disabilities are invisible and they are no less real because someone else can’t see the pain. People like Emily hide their pain because if they wore it on their sleeves the weight of it would make them collapse. People like Emily smile to shield their loved ones from the knowledge that they suffer profoundly. People like Emily push through because they have no choice and they push through even though it is agonizing. People like Emily bear the unbearable with little help from medicine or society.
This is why I fight for awareness. Because even when you live with it, it isn’t easy to understand.