One day I walked into the doctor's office and I came out with a diagnosis. At first the diagnosis gave me relief, even joy. At last I have an answer. I know what the problem is, and surely I can therefore find the solution.
I can get better. I can feel better. I will be whole again. It's all good from here.
You'd think that incurable, life-long stuff would hit you immediately, right in the cerebral cortex and wham! a solution would process.
Sadly, it doesn't work like that. Incurable and life-long are concepts that are beyond the human ability to process immediately. In my case, it was beyond my human ability to process them for years.
Incurable. Life-long. This is big stuff.
So, as I'm processing, I'm also jumping on and off the medical merry-go-round.
Like all merry-go-rounds, it's kind of interesting at first but quickly gets tedious. Endless doctors appointments, endless therapeutic options, various and numerous medical options, treatment options, insurance plan options, choice of hospital options, options of options, choices, decisions.
Obliterated comfort zones, embarrassing situations, loss of pride, personal degradation, allergic reactions, and medical/therapeutic side effects. Lots of fear.
Then you ask me the question that is clearly going to change it all. That's going to make a difference. That's going to make me a different person, a whole person, a well person, a normal person.
"Have you tried [insert suggestion]?"
Woah! It's hurtled out to me just like that. Boom! It's a simple question right? It's a helpful question. It's definitely a caring question, and it might even be a good question.
It definitely defines an option.
Then I start to realize that everyone and their mother asks this question, offering up another option, and the question becomes frequent, kind of repetitive, okay, I'll just say it -- downright, bloody annoying.
Actually, that's making light of it. It's painful. It hurts.
I'm grateful for your concern, I really am, but it's time I let you in on what this question really means to me. It's heartachingly, heart deeply, soul-wrenchingly painful. My answers hurt me. Not the words. Words are easy, didn't you just ask me a question full of easy words? My real answer is painful.
"Yes, I've tried that it didn't work."
I desperately wanted it to work, I tried it with the most positive of Positive Mental Attitudes (PMAs). It didn't work. It failed. It failed me and it made me really sad. Now I feel like a failure because what if my PMA just wasn't PMAey enough, and what if I'm just a useless mess that doesn't deserve it to work, because it should have worked right? It really should have.
"No, I've not had a chance yet."
I've been stuck on a medical merry-go-round that takes up 20 hours of my week at clinics, in scans, procedure rooms, operating rooms, emergency rooms, pharmacies, pharmacy lines; long, long pharmacy lines. It's okay though because I'm already "exploring" five medications and two procedural possibilities this week. This one human with only 24 hours in her day feels that's enough, but perhaps it's not? Perhaps I'm not putting enough into this getting better stuff, perhaps I like being sick? Perhaps I don't deserve to get better? Perhaps I ought to try harder? Perhaps I just ought to suck it up?
"It didn't work but It might be worth another try"
Actually, no it isn't, because I had a massive allergic reaction that caused my entire body to come up in red hives that made me look like a burns victim. My heart rate escalated to the point I thought it would explode, and I couldn't breath. Meanwhile technicians, nurses and doctors were flapping around me speculating whether I was about to take my last breath. Yes, I tried it, because I should try it right, because it will help, it might make me better. It didn't help, but I don't think I have it in me to explain why right now.
"I should give that a go."
Just as soon as I've spoken to my doctor to get the go ahead, spoken to my insurance company to make sure they'll cover the cost, found myself the doctor/therapist/coach that does that suggested treatment, gone through the introductory appointment, explained my list of 27 allergies, eight diagnoses and 25 side effects that might contraindicate with the suggestion. I'm definitely going to give it a go because I should. I know I should.
"Yes, that alternative treatment might just work."
Because I have another $2,000 just sitting in my account waiting for me to explore yet another treatment that my Insurance company doesn't cover. I know, if I really want to get better, if I really want to be well again I'll try anything and everything. How long will the money last though? Am I going to bankrupt my family? Will we be pushed into debt that drowns us?
"I'll add that to my list of things to explore."
I have a list, I really do, because it's important to try these things because they might make me better, and I want to get better and I must try harder to do that so working my way down this list is important. The list currently includes acupuncture, chiropractic, essential oils, Chinese herbs, osteopathy, reflexology, Swedish massage, color therapy, crystal healing, Cognitive Behavioral Therapy, EFT, NRP, astral healing, Reike, tentocularpee and sitindessertopathy. Okay, so my list doesn't include those last two made-up things. It might one day, there are always new options you know. I have to try harder, the answer is out there. If I want it badly enough I will find it -- just as soon as I've worked through this list.
You see, the question might seem obvious but the answer is never that simple.
I live with life-long incurable chronic illness and your question doesn't really want the truthful answer, and I don't really have the energy to give it. My answers make me hurt. They make me cry, they make me anxious, they make me feel inadequate. But then when I'm drained, nearly on empty I remember...
I don't need your suggestions because I have all I need already.
You see, as well as an innate inability to quickly process the concepts of life-long and incurable I am blessed with the most amazing gift man has. Hope. Hope kicks life-long and incurable in the ass.
Hope is the King Pin. Hope is the Kilimanjaro. Hope is the Empire State Building. Hope is The Biz. Hope is The Balls. Hope is the Landslide Victor.
And I have it.
My.Gosh.Do.I.Have.It.
With it comes a relentless urge to explore options, to try new things, old things, every thing possible. Hope drives me through pain, through hospital drama, and through ridiculous conversations. Hope is totally, wonderfully, astoundingly, insanely awesome.
Hope sees you through some shit.
One day I might make it to that final destination; a glorious land of good health and well-being. What's more certain is that I will one day make to it to The Final Destination and until that time I'm blessed to live with glorious, abundant and beautiful hope that spurs me on and drives me forward. I just keep going.
You don't need to ask me that question, for I'm already well ahead of you with the answer and I know I'm not alone.
Lottie has suffered with chronic illness and daily pain for the last 17 years. She is a JPoucher as a result of Ulcerative Colitis, and has Fibromyalgia, Chronic Migraines, GERD and Obstructive Sleep Apnea. You can find her at www.lottieryan.com supporting women with chronic illness to create a life you love despite it all.