30 Day Chronic Illness Challenge: Day 5

Day 5: How does being chronically ill make you feel?

I'll share a secret - I've been positively dreading a question like this one.

Frustration is probably the word which best encapsulates the well of new emotion in the wake of becoming ill. No matter how much work you put into positive thinking and moving forwards I don't think you can (or should) avoid the occasional rant or cry. It's human and it's healthy.

It's also particularly reasonable. Who wouldn't be frustrated with new limitations, new boundaries and new impossibilities which they certainly did not ask for?

(Thanks, but I'm sure I'll find it.)

For my own sake I refuse to think in terms of "might have beens". My life reached a fork in the road and fate or an almighty power or whichever idea you subscribe to intervened and I've been on my new path ever since. Sure, I'd love to have stayed on the healthy one, but I'm one of those irritatingly zen people who tends towards thinking things happen for a reason. One door closes and another opens, or so I like to think.

I certainly have my low moments or days when I want to jump up and down and shout that it's not fair - I'm not a saint, I'm a flawed human being just like everyone else. Some days I really do feel like a wide open vista stretching from horizon to horizon has been irrevocably narrowed, but it's wisest I find to have the necessary vent and then to put it to bed.

Anger and upset are normal and indeed necessary, but when you have a chronic pain condition bound inextricably with your mood which responds somewhat violently to tension and upset, it's a good idea to learn to temper things a little. For myself I tend to turn anger into resolve and a "you won't beat me" attitude. I'm starting to be absurdly grateful to the friend who named my inner health demon "Petunia" - it's wonderful having a name to direct my righteous anger at. If nothing else I can at least regress to being ten and call her names, which is surprisingly satisfying.

I'm not a person who likes to cry for my own situation, but I found it was better for me to just accept when I need to (more often than before though it is) and to keep going forwards afterwards. I had to train myself to not think of each bout of upset as a failure, which I had a tendency to do before.

Don't ever let anyone tell you being a perfectionist is fun. It's not. It's demanding and wearisome at times.

One thing I came to realise recently was that I don't respond well to being told I'm "inspiring". It's a lovely thing to say to someone, but I think deep down I'd much rather be a "normal" healthy individual than an "inspiring" ill one. Inspiring feels like a mantle I have to live up to, even on bad days. I'm well aware that's probably a quirk of my personality though.

"Everything happens for a reason" - but I'd rather like to be on the board the next time a big decision is made.

That's a wish unlikely to be granted though, so I'll just go back to being the Dragonborn in Skyrim instead. A majority share in the entire universe, servant of multiple Daedric princes, Archmage of the College of Winterhold, Listener of the Dark Brotherhood and general all around pain in the backside.

(Skyrim - vicarious horse riding and ass kicking all in one Shadowmere sized package.
Image courtesy of comicbookresources.com)

Stranger than you dreamed it...... (part one)

I came across this on Tumblr earlier today. I think I might be able to appreciate what the doctor in question was trying to say with the entire article (which is here) but I feel quite strongly against the way he's gone about some of what he's said.

For now I'm not really in a place to come up with anything constructive, and if I try to write something considered (as I always try to do) I'll only wind up spitting bile.

So, I thought I'd copy in the bit that particularly bothers me and let people have a look, and then later (possibly tomorrow) when I'm possessed of a cooler head I'll come back and say whatever I then feel I have to say.

The gentleman in question is trying to advise chronic disease patients (I think) but in the course of doing so brings up the fact they frighten doctors. I can sort of understand why we might do, but the three paragraphs of problematic metaphors for patients and the (I hope accidental) set up of the doctor experience in comparison to the patient one is extremely non-constructive in itself.

See what you think:

Dear Patients:

You have it very hard, much harder than most people understand.  Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can’t understand what your lives are like.  How do you answer the question, “how do you feel?” when you’ve forgotten what “normal” feels like?  How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue?  How do you decide when to believe them or when to trust your own body?  How do you cope with living a life that won’t let you forget about your frailty, your limits, your mortality?

I can’t imagine.

But I do bring something to the table that you may not know.  I do have information that you can’t really understand because of your unique perspective, your battered world.  There is something that you need to understand that, while it won’t undo your pain, make your fatigue go away, or lift your emotions, it will help you.  It’s information without which you bring yourself more pain than you need suffer; it’s a truth that is a key to getting the help you need much easier than you have in the past.  It may not seem important, but trust me, it is.

You scare doctors.

No, I am not talking about the fear of disease, pain, or death.  I am not talking about doctors being afraid of the limits of their knowledge.  I am talking about your understanding of a fact that everyone else seems to miss, a fact that many doctors hide from: we are normal, fallible people who happen to doctor for a job.  We are not special.  In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help.  We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time.

But chronic unsolvable disease stands square in our way.  You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you.  We don’t want to face things we can’t fix because it shows our limits.  We want the miraculous, and you deny us that chance.

And since this is the perspective you have when you see doctors, your view of them is quite different.  You see us getting frustrated.  You see us when we feel like giving up.  When we take care of you, we have to leave behind the illusion of control, of power over disease.  We get angry, feel insecure, and want to move on to a patient who we can fix, save, or impress.  You are the rock that proves how easily the ship can be sunk.  So your view of doctors is quite different.

Then there is the fact that you also possess something that is usually our domain: knowledge.  You know more about your disease than many of us do – most of us do.  Your MS, rheumatoid arthritis, end-stage kidney disease, Cushing’s disease, bipolar disorder, chronic pain disorder, brittle diabetes, or disabling psychiatric disorder – your defining pain -  is something most of us don’t regularly encounter.  It’s something most of us try to avoid.  So you possess deep understanding of something that many doctors don’t possess.  Even doctors who specialize in your disorder don’t share the kind of knowledge you can only get through living with a disease.  It’s like a parent’s knowledge of their child versus that of a pediatrician.  They may have breadth of knowledge, but you have depth of knowledge that no doctor can possess.

So when you approach a doctor – especially one you’ve never met before – you come with a knowledge of your disease that they don’t have, and a knowledge of the doctor’s limitations that few other patients have.  You see why you scare doctors?  It’s not your fault that you do, but ignoring this fact will limit the help you can only get from them.  I know this because, just like you know your disease better than any doctor, I know what being a doctor feels like more than any patient could ever understand.  You encounter doctors intermittently (more than you wish, perhaps); I live as a doctor continuously.