I see and hear this phrase everywhere.
Usually it isn't a statement made to me personally, but it is said to people with chronic illness constantly.
"You won't have to take medication if.... "
People with Multiple Sclerosis.
People with any kind of Cancer.
People with Inflammatory Bowel Disease, Diabetes, Rheumatoid Arthritis, you name it.
There has always been this general idea that if something doesn't improve, if something does not have a known cure, if something is chronic, that the person is doing something wrong. If you're still ill and still taking medication, then you are not doing something right. That you haven't tried everything. That you have simply given up.
If you have to be on pills it's because you are doing something wrong.
That is such an unfair belief.
Instincts tell us that if an illness doesn't go away, something is wrong with what we are doing. Although there are those who purposely neglect their own health, in most cases no one is doing anything 'wrong'.
Here is a list of some of the different reasons I have been told that I am ill (outside of trained physicians for the most part):
• I didn't go to see a chiropractor before I got ill at 14, he could have prevented it.
• I didn't ingest enough probiotics.
• I wasn't taking a daily supplement.
• I ate too many things with probiotics. I should have been focusing on prebiotics instead.
• I didn't play in the dirt enough and that's why my immune system decided to attack my own body.
• I played in the dirt too much and that's why my body is out of whack.
• I listened to doctors and 'Big Pharma'.
• I listened to naturopathic doctors.
• I was put on too many medications when I first got sick.
• I was put on the wrong medications.
• I wasn't put on enough medication.
• I had too much stress in my young life.
• I had too many activities on-the-go when I was young.
• I wasn't active enough.
• I drank water from the hose.
• I drank filtered water and wasn't exposed to bacteria enough to build my immune system.
• I don't smoke marijuana.
• I had too many antibiotics as a kid for several ear infections and strep throat.
• I didn't treat an infection soon enough.
• I ate carbs for most of my life.
• I'm not eating enough carbs, but too much meat.
• I am not supposed to eat meat at all, but stick to a plant-based diet.
• it's because I ate vegetables. Plant-based diets tend to harm the intestines if they are already inflamed, better stick to white meat for a while, or fish.
• I ate meat. Starches are my best bet to settle down inflammation. No meat.
See where I am going with this? All sorts of claims about why I am ill are all contradicting one another.
The truth is, we still don't know exactly why I have chronic illness and autoimmune disorders. If it was ONLY Inflammatory Bowel Disease then perhaps there would be more hope regarding a cure if we can find the cause. Each day I see new articles, new theories, new proclamations of miracle-cures.
But I don't just have Crohn's Disease (and I am using the word 'just' very specifically. Crohn's Disease is more than enough to change someone's entire life). I, however, also have disorders in my blood, intestines, thyroid, heart, lungs, at one point my liver, ovaries (before they were removed), eyes, skin, stomach, brain, pancreas, joints, muscles, hell even my skeletal system shows a few anomalies.
Unless I have some weird underlying condition that has yet to be discovered, there is no plausible explanation of one cause for all of that.
One of my physicians said it best - she believed that, somewhere along the line, my immune system was disturbed from developing properly; that I AM autoimmune, and my immune system in general IS a disorder.
Alright - so how do you get someone like me off of medication?
If I go off of my IBD medication (which I have tried doing several times now), the list of foods that I can eat is fewer than the fingers on my hands. So do I wean off of medication and stick to a strict plant-based diet? Or is it the carb-loading diet? Or maybe the paleo diet full of meat? Or the vegan diet?
Which one?
I am told several times a day, separately, that each will work. So which is it?
The really sad part is that I really and truly HAVE tried many of these diets.
No cure. No remission.
Now for the question:
When you saw "No remission", did you roll your eyes and assume I cheated? (I didn't, by the way). Did you think to yourself 'yeah right, if you followed the ______ diet properly you would be in remission'? Did you try and find a way to make it my fault so that you can feel more comfortable?
And why are we so uncomfortable? Why do we cringe and distance ourselves from the idea of being in pain and suffering from illness long-term? Why is it our instinct to assume that a permanent illness is impossible?
Further to that, there is also this assumption that no one can be happy if they are in excruciating pain every single day.
Trust me, you can be happy and be in pain. All the time.
I don't have all the answers.
I just hope that people begin to understand that chronic illness really does mean chronic. That anyone with chronic illness is trying, every single day, to find the best treatments and alternatives that work for them. Not everyone - to find a treatment plan that is specific to their body's needs.
Going off of medication sounds amazing. It really bothers me to know that if a natural disaster were to occur and I can no longer get certain medications, then I would be potentially doomed. Survival of the fittest would rule me out, likely within a few months, maybe a couple of years if I'm lucky. I hate that feeling. That dependency. That burden. If I could give up everything I am taking, trust me when I say that I would.
But it's not that simple.
It's never that simple!!
I am taking medications that help me function better in this world. I am taking medications that HELP. Each medication that I take has a specific function, a specific benefit, and if something no longer works, I don't continue taking it. That part is simple to me. I take what my body requires - and some of it is naturopathic, some of it is not. No more, no less. If it works, who cares??
My body, however, is one of a kind, so I will never expect my routine to be the exact same as another's. I will accept good-hearted advice, and I will also give tips and tricks that work for me if solicited, but I know that every body is different.
Whatever works, right?
When we become ill, we spend hours and days and months and YEARS trying to find a source and trying to figure out a cure or, at the very least, some symptom relief.
Then, once we find some symptom relief, patients are bombarded with criticism and guilt over what they should/could have done differently, and being told we have been misdiagnosed or misled or whatever the case is.
It is overwhelming.
It is exhausting.
We try to go to the experts, but everyone and their dog is claiming to be an expert.