Why I Don't Want to Hear About 'Natural Cures' for My Illness
I’m at work, taking a brief break to check my personal messages. My aunt sent me an email, and already I’m flinching, knowing what it will be.
This time, it’s a document about multiple sclerosis (MS) in Guatemala – the story of a woman with MS who went to Guatemala, was treated with a mysterious green liquid for 120 days, and was remarkably cured. The woman gives the doctor’s phone number, cautioning that he won’t share what’s actually in the mysterious green liquid, but that it works. She advises proceeding with a passport application first, before planning a long-term stay.
I read the piece with heavy skepticism, though I linger over the sentence where the woman writes that she “was totally well.” I close the document and try to get back to work, but it haunts my mind nonetheless. What if this story is true? What if this mysterious green treatment actually works? What then?
I know my aunt means well, and that she’s just trying to help her family however she can, passing on whatever information she finds.
But her “help” hurts more than she knows.
I’ve had relapse-remitting MS for seven years, and been diagnosed for five. I’m doing remarkably well, all things considered: I can still walk and rarely need to use a cane, my symptoms are almost entirely manageable through medications (I am a minor walking pharmacy), and my lesions are stable – I haven’t had a flare-up since I’ve been diagnosed. There’s pain – rather a lot, sometimes – and the moments when I falter and fail, but I’m doing OK, all things considering.
One of my aunts has MS, too, and she uses a wheelchair now, after a slow decline over the years. One of my uncles has MS, too, and he’s doing fairly well, despite having been diagnosed with primary progressive MS for over a decade – all he needs so far is a cane. Autoimmune disorders run in my family – my grandfather, their father, died from MS.
We each handle having MS in our own way. My aunt draws comfort and support from her husband. My uncle faces his disease head on, nonchalant. Me, I try to pretend I don’t have MS as much as I can, because it’s still hard to accept. I have a debilitating, incurable illness – who wants to admit to that? So I take my pills and try to fit in as best I can, while quietly remembering my physical limitations in the back of my mind so I don’t embarrass or hurt myself.
It’s not just the physical symptoms that make an incurable illness so devastating; the emotional toll an incurable illness takes on you is hard. Even if your symptoms are treatable, your disease never goes away. Never. And living with the knowledge that something in your body is wrong, something is hurting you still, constantly, and that it always will – that’s difficult. That’s hard. It makes thinking of the future difficult, when you talk with your fiancé about having children, wondering if it’s irresponsible to try and play the odds on the MS not being passed on. It makes taking a job more complicated, when the health insurance plan of the company matters more than the salary or job functions. It makes looking out at the sunset in the quiet moments harder, because in the quiet times, when you’re not pretending, and there are no thoughts or duties to distract you, the tears can start coming without you ever meaning to cry.
Multiple sclerosis is incurable, like many other illnesses currently out there. Modern medicine can treat the symptoms, but it can’t yet make the illness go away.
There are some people, some who believe in things like “natural medicine,” who claim otherwise.
My aunt is one of these people. She lives and thrives outside the lines, goes on vision quests, seeks enlightenment, and immerses herself in the natural world. She is constantly sending me, and the others in my family, information about the different cures for MS she has come across.
To her, she is just helping. “Why not try it,” she thinks. The worst that can happen is the cure won’t work, and we’ll just be back where we started. There’s nothing to lose, and everything to gain. So why not try?
What she doesn’t realize is that these cures she offers, these obscure remedies, do much more than potentially cure MS.
They offer hope.
It is incredibly hard to come to terms with the reality of a long-term illness. There’s nothing to look forward to, really; there’s no light at the end of the tunnel with this. It’s often hard to wake up and face the day, knowing exactly the type of pain and struggle you have to look forward to, to just function and to live. But over time, it becomes possible to become somewhat accustomed to your new reality, dismal as it may be, and handle it, taking it day by day. I’m used to my hands hurting now, and I’ve resigned myself to my fingers always tingling, always feeling numb. I’ve accustomed myself to taking a cane to work so when my legs falter and fail I have it there with me, and I’ve grown used to the glances a 27-year-old walking with a cane gets in the street, and learned to tune them out. I’ve learned to function with my illness, and although it’s not ideal, I’ve learned how to live and be as content as I can.
These “cures” offer the hope that everything will be OK again, that my hands will function and won’t hurt, that I won’t need a cane, that I’ll be normal, and my God, I start to tear up just thinking about how much my life would change and improve if that were to happen. I could have children guilt-free, I would live to see them grow, I could walk without a cane when it’s cold out, I could play the violin again with my hands working once more, I wouldn’t be in such constant pain…
And then, when the cure doesn’t work, that’s all taken away.
And it’s like being just diagnosed all over again.
When something comes along and gives me hope, all my coping mechanisms are lost and forgotten, discarded as something unnecessary, as my disease is curable! I will get better! I just need to drink this Jamba Juice three times a week for three months, or I just need to see this chiropractor and take these vitamins, or I just need to go to Italy and pay 30,000 euro for this cutting-edge treatment…
The loss of hope in this situation is devastating.
And starting over, slowly putting back together how I handle being incurable…
Starting over is harder than ever.
Please don’t tell me about the magic green liquid in Guatemala. Please don’t tell me there’s a new tea in India that people say cures all their symptoms. Don’t tell me that if I never eat gluten or dairy again, my MS will go away on its own, and don’t tell me that if I put drops of oxygenated water under my tongue, I’ll get better in three to six months tops.
Don’t tell my friend that her endometriosis is because she’s depressed, and that if she cut out processed foods from her diet, her body would heal itself in under a year. Don’t tell my friend with irritable bowel syndrome that there’s a cure in the Czech Republic that he should go and try, a cure that Big Pharma won’t bring to the states because it’s natural and they can’t make money off it.
Don’t tell me there’s a cure for my disease. Because I know there isn’t. And whenever you tell me these things, even when I know you’re lying, there is a small part of me, the small part that helps me get up and face every day. There is a small part of hope that whispers, “But what if?”
And when it doesn’t work, and that voice falls silent, it becomes harder than ever to carry on.
If you have a friend with an incurable illness, please, try to be there for them and support them emotionally as they carry on day-by-day, and be there for them when their illness makes them physically falter. Send them links you find about new drug trials if you like, or offer to help take them to physical therapy. Be the best friend you possibly can to them, and offer them your love and support.
But please. Don’t send them links about magical cures.
That “magic” hurts more than you know.
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Gettyimage by: Maya23K