I started writing this blog post two weeks ago – in the time in between a lot of things have been happening in my personal and professional lives that have prevented me from finishing it until now.
The lesson is that managing a new diagnosis and the accompanying change happens alongside life; it’s not something you get to think about too much before it just IS. And life is messy and complicated, some times more than others….
Last week I sat in a waiting room a lot less pleasant than this one waiting for a day I had waited for, for a very long time.
That day was D-Day – the day I would finally get a Diagnosis.
There’s a few thoughts that go through your mind when you’ve waited this long for an answer that might explain all the seriously weird things that have been happening in your body.
What will it mean?
Why is this happening?
Why has it taken so long?
When it comes, it’s a relief but it’s also an opening up of a whole lot of other questions that may not ever have answers.
And so I sit in another waiting room for another bunch of tests and I know that I will be waiting here every two weeks for the next few months. It’s heartbreaking and confusing and some other feelings I can’t yet name.
And sitting here I think about the different “performances” of health that we are required to make in order to be taken seriously enough to get that diagnosis. I have suffered years of pain that has come and gone without explanation, without knowing what it is I am doing or not doing that is the root cause. Although I know now that what I was developing was a Psoriatic type Arthritis (or PsA), and that the pattern and progress of the disease was fairly typical; I can’t help but be frustrated at the hundreds of false flags that were attributed not to the disease that was quietly robbing me of my vitality but to my weight or to assumptions about how I eat or exercise.
The prejudicial treatment of people who are fat, isn’t just confined to the medical professions.
Just last week, when I was talking to a colleague about getting back into yoga and how that mindfulness was supporting me to be a more effective leader, she made comment that “yoga is really great for weight loss”. Her face when I told her that “I go to FAT YOGA, and no I don’t think that being FAT is a bad thing and I go to yoga for my mind more so than my body and isn’t it just a force of capitalism to make us feel bad so that we buy into commodified health” was part shocked and part dismayed that her advice and assumptions weren’t welcome nor were they news to me.
Similarly a conversation with just about anyone garners some form of advice about how I should manage MY condition. This “concern trolling” is just another form of abuse. If you wouldn’t yell “cripple” at someone using a wheelchair, you probably shouldn’t suggest “helpful advice” either. Trust me, if/ when you have a chronic illness of your own you will be doing your own research about how to best cope with it.
Like the original D-Day, mine is also an invasion. A diagnosis is a call to arms, it signals the beginning of a campaign against an unwelcome disease, a series of battles which will be won or lost, but not without some collateral damage.
This war is not just with one’s own body, but also with the tides of conflicting advice. At some point the only sensible action will be détente; an acceptance that war is a mutually assured destruction, and finally peace, where minimal intervention coupled with understanding can sustain harmony.
The takeaway is this: if you care or have concern for another, ask yourself, are you an ally or an enemy?