I would never have known the name Yolanda Foster were it not for her Lyme Disease. For the uninitiated (people like me who never watch The Real Housewives of Beverly Hills), she is one of the Housewives, and she’s been waging a very public battle to regain her health.
On a recent episode, the other housewives were seen gossiping about Yolanda. They were wondering if her illness could be fictitious, perhaps an example of Munchausen Syndrome, or simply a bid for attention. It’s a story that resonates all too well with many Lyme patients. People either can’t get their minds around the scope and complexity of the illness, or they don’t want to believe it can be real because then THEY might possibly get sick too, or they inexplicably find it easier to believe that someone they care about is making everything up rather than give credit to their very real experiences.
Many doctors fall into this category too, either laughing at their patients with, “Who told you that you have Lyme, ha ha ha?” or “We don’t have Lyme in ____ (fill in location here).” I’ve seen patients go into intense self doubt, romantic relationships fail, and people become completely estranged from their families over a Lyme diagnosis. I’ve seen lifelong friendships fall apart. We all have. It’s so strange, when we all know that if it was cancer, or HIV, or some other widely-accepted disease, the reaction would likely be to rally around the patient to give support.
The phrase that often comes out of our mouths is, “I hope you never have to go through what I’m going through,” or something to that effect. This is the right thing to say, the “higher self” version of a plea for understanding and support that’s gone unanswered.
And this made me wonder.
Is that statement EVER sincere, when uttered by a person with chronic illness trying to explain themselves to an unsympathetic, head-up-their-ass friend, relative or doctor? Can any of us really be that evolved? Because when I watched those gossipy women talk about Yolanda, all I really wanted to say was, “I hope one day you get your perfect little bubble burst, so you can understand what this is like for someone like her.”
I'd like to see how these Housewives cope with what it means to have their integrity questioned as they suffer with as much grace as possible on national TV. My respect for Yolanda skyrockets as I see how generously she deals with these snipers.
I can easily and sincerely wish my supportive friends and family a lifetime without Lyme, because I see the compassion and the understanding, and I would never wish them ill. But it’s those “other” people I’m talking about.
Because, if I’m honest with myself, my fondest wish for those who simply won’t “get it” is that they finally do. And since scholarly articles, lab results, personal experiences, videos, shared doctor visits, and multiple viewings of “Under Our Skin” have failed to do the trick – what’s left besides having that person walk a mile in our shoes?
Our higher selves, of course, recoil at the idea of wishing ill on anyone, or – God forbid – admitting it if we do. Knowing what we go through every day, how could we possibly wish it on anyone else, especially someone we love and who is supposed to love us? What kind of horrible person would do a thing like that?
Well, I guess I’m that horrible person.
That doesn’t mean I’d wish a lifetime of chronic illness on a person, but certainly a taste wouldn’t hurt. Just enough to trigger some badly needed compassion on the part of those who only seem capable of learning from personal experience.
I realize that saying, “I hope you never…” has the effect of making us feel good about ourselves, looking selfless while we suffer – wishing everyone else well, all the while still trying to get across the point that this is one of the worst things that could happen to a person.
There are lots of other instances of such statements, where people say one thing and mean another. I hear people say, “I’ll pray for you,” when it’s clear the meaning is, “You’re screwed, and you probably deserve it.” Or, “Bless your heart” when it’s really, “I’m so shocked I can’t believe what I’m hearing!” So perhaps we Lymies deserve a saying of our own, and maybe this is it.
Or maybe we need to be more honest than your average bear. Perhaps we would plant a more productive seed if we said something like, "One day, I hope you understand this better than you do now.”
What I know about myself, and all the people I know who have Lyme, is that we’re not horrible people, even if we do honestly wish that those clueless "others" could experience just a bit of what we deal with. Because in the end, if those people who couldn’t show compassion to us were to actually get sick with Lyme, we’d be the first ones extending a hand to try and help.
Because as much as we want the understanding, we also want our experiences to count for something. So that being chronically ill is not just a huge pile of meaningless crap.
And the best way to make that happen is show our higher selves to those whose curtain of ignorance has finally been lifted. And hope that someday, they too will pay it forward.
