Incurable

I am chronically ill. My chronic illnesses cause me to be seriously disabled. And a word I have to use a lot to describe my state of illness is “incurable”.

It’s a word that I have grown comfortable saying. Yet it doesn’t seem to be a word that friends and acquaintances are able to comfortably hear me use about my own illness. Oddly, as I discussed before about the fact that I will likely never recover the ability to walk unaided, it seems to be the acquaintances more than the friends who have a hard time hearing and accepting the reality of “incurable”. And if people would keep their discomfort inside their own heads, that’d be fine. They just have an annoying tendency of saying things that make clear that they feel that *their* discomfort is somehow *my* problem.
And it’s not.

So here’s a post about what “incurable” means. Starting with what it DOESN’T mean.

When I say my illness is “incurable”, I DON’T mean, “I’ve stopped trying to get better, convince me not to give up hope”.
When I say my illness is “incurable”, I DON’T mean, “Please suggest a treatment you may have heard about your friend’s Uncle’s step-daughter using for an illness that may or may not be similar to any of mine”.
When I say my illness is “incurable”, I DON’T mean, “Please argue with me about whether or not I have the correct diagnoses”.
When I say my illness is “incurable”, I DON’T mean, “Insist that I have misunderstood and my illness can’t possibly be incurable”.
When I say my illness is “incurable”, I DON’T mean, “Tell me, after doing not even 10% of the research that I have done into the current medical science behind my own illness(es) that a cure simply MUST be being developed and/or will be available within the next decade or so”.
When I say my illness is “incurable”, I DON’T mean, “Repeatedly ask me if I’m really definitely sure that my illness is incurable”.
When I say my illness is “incurable”, I DON’T mean, “Now you should question me on how many treatments I’ve tried and why I haven’t tried x, y,or done p, q, r *just in case* “.
When I say my illness is “incurable”, I DON’T mean, “I need you to help me be more positive! If only I were positive enough, I’d spontaneously stop being ill!”

When I say my illness is “incurable”, I DO mean, “I am, in all likelihood, going to be ill for the rest of my life. I’m telling you this so you can understand that there is no “when I’m well again” for you to plan to do that thing with me – if it’s going to happen, I’ll be doing it while ill”.
When I say my illness is “incurable”, I DO mean, “I’ve looked into the current medical research on my conditions and I’ve looked at the *pace* of medical research into chronic illnesses and it looks really unlikely that anything resembling a cure for my illness will be developed, tested, declared safe and made available on the NHS within my lifetime so I will probably be ill for the rest of my life”
When I say my illness is “incurable”, I DO mean, “The available treatments for my illness deal with symptoms and not root causes. I am going to be taking medication for the rest of my life”
When I say my illness is “incurable”, I DO mean, “I understand and accept the reality of my chronic illness and it’s be easier for everyone if I am straight-forward and realistic about the fact that I will be ill for the rest of my life”
When I say my illness is “incurable”, I DO mean, “You are expressing unrealistic thoughts and wishes about my body and future and I am trying to gently but firmly dismiss them. There is a word for illness that will not and cannot get better and I am using it”.

I have to live the rest of my life knowing that I will be ill for pretty much every second of the rest of my (likely normal!) life-span. I have to be okay with that. I won’t ask you to feel okay about it but I will make sure you have to KNOW it too. I won’t pretend not to be ill for you and I won’t pretend for you that I won’t be ill tomorrow as well. No doubt that pretence would make many people far more comfortable around me but it’d be a lie. When I say “I have incurable chronic pain and fatigue”, I am trying to tell you as swiftly and kindly as possible that I will always be ill. And that there’s no pretending otherwise.

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s