“Rather than embrace the immutable and
humanizing fact that we are all dying at all times, we point the finger of
scorn at those who die more quickly wondering how they have brought it upon
themselves.”
God
is No Laughing Matter – Julia Cameron
I found this quote in the back of one of my
notebooks the other day. I remember a few months ago reading it, and copying it
down because it struck me as interesting, but even as I did I didn’t 100% agree
with it. Yes, I have come across people who judge me for being ill. I have come
across people who will make assumptions about why I am in the position I’m in
now, or others who believe I could be fixed if I just... and the fact that I
don’t want to, must mean I don’t want to be well.
For the majority of people, I don’t think
the word “scorn” fits though. I think most comments of this nature come from a
very genuine, if misguided, desire to help. Others, I think, come from the
naïve human believe, which we all hold to some degree, that life should be
“fair.” If someone gets sick because they smoke, do drugs, eat an unhealthy
diet etc. then we can comment that it’s sad, but we can feel secure in the
belief that it won’t happen to us because we take care of ourselves. We can
feel confident that they did indeed bring it on themselves, and we aren’t going
to make that same mistake.
One of the most common questions I get
asked is whether I have tried a gluten-free diet. When I say I’ve been
gluten-free because of coeliacs for over ten years, the response is often one
of sadness. I think people sometimes hold on to the idea that you can cure
everything with something like a gluten-free diet like a talisman, fighting off
the illnesses they either have now or want to avoid in future. But
unfortunately this isn’t always the case.
The reality is sometimes people who take
the best care of themselves get very, very sick. Sometimes people who have
terrible lifestyle habits enjoy a disgustingly unfair level of good health.
Some people have immediate success with either conventional, or alternative
treatments, and others of us have to struggle to find anything that will make
even the slightest bit of difference. Because life isn’t fair, and that’s just
the way it is.
I felt this tied into my first post about
the choices people with chronic illness face, because as I wrote I was trying
to pin down why it is that everyone seems to have an opinion on which options
you should take when it comes to treatment. I was also trying to pin down why
it is that I, and many others, get defensive when others make suggestions about
what we “should” be doing.
In many cases, I think making suggestions
probably comes down to wanting to share the happy. If something is working, won’t
everyone want to try it? But the reality is whatever it is that’s working for you
or someone you know; it may not work for everyone else. Other people may have
already tried it, it may just not be right for them, or it just may not be a
priority right now. When I dismiss something another patient suggests, it
doesn’t mean I don’t believe it worked for them, just that it either hasn’t
worked for me already, or there’s a very good reason I can’t or don’t want to
try it.
So why is it that I get defensive?
I don’t mind people making suggestions, but
I do mind if people push them or indicate that I’m being unreasonable not to
try them. For example, I’m sure cider vinegar does have many healing properties
but, given that I’m allergic to apples, I don’t have any interest whatsoever in
trying it. I don’t expect people to know I’m allergic to apples, so I don’t
object to the suggestion, but I do get irritated if people push it once I’ve
told them it’s not an option for me. The allergy isn’t going to go away if you
keep regaling me with the benefits of apples. Even if there isn’t a reason, and
someone just doesn’t want to try whatever it is you’re pushing, I’m not
convinced nagging is the best way to change that. If it’s something that you
believe in, then by all means suggest it – but ONCE is enough.
It does also bother me when suggestions are
given with an air of authority or with the implication that the suggester is an
expert in the subject. Unless you really are an expert in both the thing you
are suggesting AND the disease(s) you are proposing to treat you could be doing
more harm than good. I can’t tell you how many times someone has suggested
something that would actually do more harm than good for me. Not necessarily
because the thing itself is harmful in general but because it is harmful for my
particular illnesses. I can’t say this enough times: Just because something is
natural does not automatically make it safe. I am old enough and wise enough to
do my own research, and make informed choices, but I look back at teenage-recently-diagnosed-me,
and realise that I wasn’t always. If you’ve heard about something you think
could help, but you don’t know all the facts, just admit that. I’m far more likely
to trust someone who says: “I don’t know much about it, but would this be
helpful for you?” than to someone who insists they know exactly what I need,
despite evidence to the contrary.
The other thing I find hard to deal with is
when suggests have an element of blame attached to them. A series of posts circulated
on facebook recently depicting images of fruits and vegetables, against images
of medications with captions like “when are we going to understand this is the
cure (the produce) and this is just a band aid (the medication)?” or others
suggesting that medications are the cause of all illness, and we’d all be cured
if we just treated everything with honey.
I do strongly belief in the positive effect
diet can have on illness, and I think alternative therapies can be very
beneficial, but neither are a cure. I have always had a good diet, including my
5+ a day, but I still have health problems. I’m not sick because I didn’t eat
enough fruit and vegetables as a child, nor can all my problems be blamed on
medication. Suggesting anyone brought their illness on themselves by diet or any
other means will most likely come across as condescending and, as the quote suggests, like scorn whether that is your
intention or not.
If you haven’t had first hand experience of
chronic illness in your own family, it can be easy to believe that you go to
the doctor or alternative medicine practitioner, they tell you what’s wrong,
they treat you and you get better. It is hard to fathom that sometimes there
isn’t a simple answer. It’s also hard to understand that just because something
is natural, that doesn’t automatically mean it’s safe or beneficial.
I think basically it comes down to, the
suggestions aren’t the problem, but sometimes the way suggestions are made can
be offensive. My advice to people would be to think about how you would feel
when confronted by what someone else think you “should” be doing. Take a moment
to listen and to ask some questions before jumping in with what you think the
solution is. Posing your suggestion as a question can help too. Rather than “You
should...” think about “Would _______ help?” or “Have you ever heard of
_________?”
And most of all, remember that it’s not always
as simple as cause and effect with chronic illness. So leave the blame behind,
at least until you have all the facts.
Thanks for reading,
Little Miss Autoimmune
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