I did a bad thing…

I did a bad thing.

I got sick, and then I started getting better, then I stopped. I didn’t get better. I just stopped.

I’m in illness limbo. I’m much better than I was when I was severely unwell, but much worse than I was “before”, before I ever got sick. Well okay, maybe not much worse, but worse. I’m not going forwards, I’m not going back. I’m not bad enough to complain to my doctors, but I’m not where I thought I’d be, back to “normal”.

It’s been a long time now since I got sick, and I’m definitely well over the acute phase of crippling anxiety, black depression and the odd weirdly happy and effective days of mania.

I was just commenting yesterday that I never have dysfunctional anxiety anymore; just regular, everyday person anxieties that are reasonable and well founded and manageable. But I was wrong. At that very moment it was sneaking up on me again and bam! it got me!! But only a bit dysfunctional. I don’t have the darkness and hopelessness of depression, just the sluggishness and lack of motivation and tiredness…but even that waxes and wanes giving me better days and worse days due to no particular reason. Mania continues to be a little brightness on the horizon that breaks through any residual depressive effects and gives me a little happy and useful and wish-I-was-like-this-all-the-time day or so, here or there!

I’m medicated like you wouldn’t believe, and a recent experiment my psychiatrist and I tried of reducing my meds has shown me very clearly that without these meds, I’d be right back in the thick of my acutely unwell stage!! It’s not like they aren’t working; they are, they really are! My moods have been a very difficult case to crack and it has taken 4 medications for mood and months to years of appointments to get on top of the main symptoms. And they work. I can, somewhat distantly now cos it’s been a while for some, remember how I was before and after starting each one, which may just be my saving grace down the track when I, like every bipolar patient, get to the stage where I think I might just be better off not taking my meds. One request of you, friend: don’t be the person who suggests I should go off my meds. The consequences of taking on that responsibility may well be more than you can bear. You take my life in your hands if you suggest any such thing. For all I complain about where I am, I always know very clearly that I would be so much worse off without my meds. No question. Ever. Life isn’t perfect but taking away the crutch holding me up isn’t going to help. So save it, keep it, sit on it, hold it in, swallow it; you are not helping anyone, almost ever, by making any such suggestion. You are warned.

But here we are. I’m not sick, but I’m not as well as I thought I’d be. As I hoped I’d be, planned I’d be, “knew” I’d be. Isn’t this the dilemma of every patient with a chronic illness? I go to the doctor with my illness, the doctor says okay I’ll treat your illness, I hear “I’ll get you back to normal”, and go on my way happily ever after. I think I’m presenting the doctor with a chest infection that he can fix, and then return me to my previous health. But this is not a curable disease. The treatment works, the doctor says I’ve treated your illness, I look forward to getting back to being me, my old self, and then, as the Goons would say…suddenly, nothing happened!! Yes the treatment worked. Yes the doctor has done his job. But this illness doesn’t go away. Because that’s not how it works. The illness stays. The treatment stays. The illness has just been put back to bed for a while. But there are some residual effects that haven’t been buried and they remain and irritate me. Because that’s how it works. I don’t know what it would take to get every last little bit of it under the surface…I don’t think I want to know because it either isn’t possible, or the trade off would be too severe.

I’m starting to think “normal” isn’t a reality that I’ll ever reach again. I’m starting to think that my life has been permanently changed. I’m starting to think I’m stuck here.

I don’t know.

All I know is I’m here, and everyone seems to want me to get fitter, healthier, stronger, slimmer or shall we shall less large (keeping it to reachable goals), more energetic, more involved in my own life, more something or other. And don’t mistake me, I want that too. I want it all. It’s just that I can’t see how. I can’t see how to get there. Some people say, well you made it this far through, I’m sure you can do it. But my little/big secret is, all I did so far was hang on. Through all of it, I didn’t really do anything that active; I just hung on. Now the goals require something more active and I don’t know if I can do it. I’m not sure that I can do what’s required. I guess that’s why I’ve stalled here. The next step possibly requires more than I can give.

Aaaaahhhh. Sigh. I did something bad. I stopped getting better. Can I start again?

So tell me…?

Something that I’ve found out along this journey with me, my head and I is that questions are really important.

It was that question that has become an advocate for helping others with mental health concerns that first triggered my understanding of the need for questions; R U OK?

I’ve always been interested in mental health and I saw this group pushing people to understand and use the question R U Ok? to start talking to others about what’s going on, what’s wrong, what’s troubling you, what’re your concerns? I thought it was a great idea and I bookmarked it in my head to use someday if I saw someone having a hard time.

I wasn’t sure that it would be effective but I planned to give it a go anyway; nothing ventured, nothing gained, right?

But then, before I had a chance to use it to help another person, someone asked me, and I burst into tears!! Just like that! That is how powerful the question is and how right on target it is to really hit the spot when someone is down, anxious, fearful, despairing etc.

I didn’t think it would work. But I walked into a doctor’s room to get some routine results, she asked ‘are you okay?’ and it turns out I wasn’t, to a severe degree which I had not even realised up until that moment.

When she said, ‘how are you?’, as I walked in the door I said fine. That question is just too automatic and we are too programmed into a standard response that doesn’t really give an answer. We know when we ask it that it’s more for form than for really enquiring into someone’s health. It has become a greeting more than a query. Not to say that it can’t be used as a question; some people can inject that something extra that shows that they genuinely are enquiring about your health, but usually that’s not the case.

But there is something unique, direct and unusual about the question ‘are you okay?’ that hits a nerve, that registers with a person as an actual question and that demonstrates some extra kind of care and interest on behalf of the asker.

Questions are so important in mental health.

We can’t lay open a wound, or show an obvious dislocation, or contusion, or register a positive blood culture, or low blood level as evidence of our condition.

We may not look ill, or sick, or injured to other people.

All the evidence of our ailment is locked inside our heads.

It is literally all in our minds, but not in the way that that saying is usually used, to suggest that it’s a figment of our imagination!

There is nothing imagined or exaggerated or fictitious about any mental illness.

However there is a level of difficulty for anyone treating a mental illness, be it doctors, nurses, psychiatrists, psycholgists, counsellors or any other health professionals.

To diagnose a mental illness, as with any other condition, a set of diagnostic criteria must be met. But none of those criteria are obvious when a patient walks in the door.

The diagnoser (doctor or psychiatrist) must be able to draw out the information that they need to make a diagnosis by asking questions. They need to ask a lot of questions. Questions designed to gather information, to confirm suspicions, to determine signs and symptoms of the condition.

They have to be very skilled in asking questions AND in listening to the answers for clues about what is going on with the patient.

It takes time! Sometimes a lot of time. Sometimes questions are asked over and over. There is a purpose to that; it is to gather the right information so that the right diagnosis is made and the right treatment given. It might seem repetitive but every question fills a useful part of the overall picture. It’s not a sign of incompetence on the part of the person asking the questions; its a part of their professional skill.

Patients most often don’t know what is going on with them. I’m a health professional with a clinical understanding of mental illness but I still didn’t recognise mental illness in myself. I just thought I was stressed at work. The fact that I was constantly obsessing over work all day and night, that I couldn’t sleep, that I was being clingy and petty and being a huge strain on my husband with my concerns and fears and anxiety didn’t occur to me to be an excessive reaction. So I can’t even imagine how patients with no prior knowledge of mental illness feel when they start to suffer from symptoms.

They might be scared, afraid, stressed, anxious, overwhelmed, confused, in denial or fearful of what the diagnosis will mean and what treatment will be prescribed. So the doctor also has to tread carefully around the person’s soft or sore spots but still trod and poke enough to get what they need to do their job.

In any emotional state a person has more difficulty remembering and recalling, trouble giving an accurate history, limited ability in listening and responding, and struggles with taking in information. This is one of the reasons why questions need to be repeated; to be sure that the right answer has been given. It’s also why seeing multiple doctors on different occasions can be useful in building a clearer picture of what is going on.

Often a patient may not be diagnosed immediately, because of these factors. It may be considered in the patient’s best interests to allow them time to go away and calm down, to give more thought to the history of symptoms that they have experienced, and then to bring them back and ask further questions. Of course it isn’t safe for all patients to be sent away; some need to be kept for their own safety, some need to have treatment started immediately. For those who are sent home to return late, maybe the same questions will be asked all over again, and although it seems tedious to the patient, it is all for the purpose of gathering as much information as possible so that the best outcome can be achieved for every patient.

So, questions.

Tell me what’s been going on?

How have you been feeling?

When did this start?

Who have you already seen about this?

What treatments have you tried?

Has anyone in your family experienced any mental illness?

How long have these symptoms been going on for?

How severe are your symptoms?

What symptom is the most difficult for you?

What has brought you here today?

How are you today?

Compared to then, how are you now?

What do you think has triggered these symptoms?

What has happened that might have caused this?

What do you know about your condition?

What do you know about the treatment for this condition?

What’s the worst symptom that you are experiencing?

How are you coping?

Are you experiencing any side effects?

Give me a run down on how the last week has been for you?

How often do you shower?

How often have you been getting out of the house?

Are you finding enjoyment in life?

How has your motivation been?

What have you been getting up to?

Have you been hearing or seeing things that don’t exist?

Has anyone been speaking to you through other objects?

Are you suicidal?

Have you had thoughts of harming yourself or others?

Do you have a plan to harm yourself?

Have you had suicidal thoughts?

Have you had thoughts that are frightening to you?

How has your sleep been?

Tell me what you are afraid of?

Do you ever have periods of great energy when you can achieve a lot? Or when you don’t need sleep?

When are you not anxious? Are there any places where you feel comfortable?

What things make you anxious? What things trigger a panic attack?

There sure are a lot of questions that can be asked!! And this is probably the tip of the iceberg really, these are just the questions that I can remember from the health professionals that I saw. I’m sure there are many others for other mental health disorders.

And yet, the most important question is whichever one you ask to the person that you see struggling. It really doesn’t matter what it is. It can be r u ok?, how ya doing?, what’s up with you?, how are things?, how have you been going lately?.

As long as you take the courageous step of asking and listening, you will be doing the right thing. Go you!!

“Totally incapacitated”

Here’s one of the perks of being a health professional.

When the tables are turned and I find myself on the other side of the bench/bed/clipboard, I can understand the language.

When a doctor, nurse or other health professional forgets to translate the Greek/Latin into English I still know what they’re saying.

I know the medical terms. I know the diagnostic criteria. I know the treatment plan. I know the drill.

Because it’s my language, usually.

“Take these tds. Experiencing anhedonia. Query gets elevated. Ruminating. Appropriate. BP1”

I spent years learning all the terminology so that complex medical information can be quickly and easily communicated to other health professionals. And then spent years of practice learning how to translate it back in a simple, un-involved way to patients and non-health professionals.

So now, when I see a doctor it doesn’t matter whether they use the Greek/Latin or English; I can understand.

This has its downsides.

Sometimes doctors use Greek/Latin code to communicate sensitive information amongst themselves that the patient doesn’t necessarily need to know at a point in time. Information that may have a negative impact on the patient. Information that may alarm the patient unnecessarily. Information that may skew the way the patient sees themselves and reports information to the doctor. Or many other reasons.

Patients don’t like this most times. They want to know. They want to be told. They want the translation of doctor-speak.

And so they end up asking for information that is unnecessary; that will later prove to be irrelevant; that scares them for no good cause; that gets them looking for specific signs and symptoms that may not be there and creates a degree of paranoia; that gets them reporting biased information to the doctor instead of giving the full range of  information that the doctor needs to determine a diagnosis or treatment plan.

For example a patient comes to the doctor with a dry cough that has been going on for a couple of months.

In the doctors’s mind the common causes are viral, post-nasal drip after a cold/flu, or chest infection. The less likely causes may include tuberculosis (TB) or lung cancer. But of course no doctor will tell a patient who has just walked in to the surgery that they may have lung cancer or tuberculosis. That would create panic, scare them for no reason and bias the patient to give information that they think is related to lung cancer or TB. It would create a lot of emotion that would take a long time to deal with and is unnecessary.

Instead the doctor runs through a series of questions to rule in or rule out different diagnoses and comes to a conclusion, makes a diagnosis and comes up with a treatment plan. Without causing bias or terrifying the patient by telling them the options that they are ruling in and out. Without giving them unnecessary or irrelevant information. Without telling them information that somehow they think they need to know.

They communicate the diagnosis and treatment plan and send the patient on their way.

(This is an example only and not a comprehensive diagnostic description!)

The unfortunate thing about knowing the language is that I get these sensitive bits of information. I get information that I don’t need, that may end up being irrelevant. I get information that scares me, that changes the way I think about myself and the way I look for symptoms. I get information that is more than I can handle, that weighs me down.

Here’s a translation of the terms above:

“Take these tablets 3 times every day. The patient is suffering from an inability to experience pleasure in, or enjoy, day to day life. There is a possibility that the patient suffers from episodes of mania including high energy, extra happy moods, enhanced appetite, lack of judgement and self control. The patient is experiencing circulating thoughts on the same subject that keep going around and around and prevent other thoughts. The patient is behaving in a reasonable manner and is not demonstrating any unusual symptoms. Bipolar 1 disorder, otherwise known as manic depression where a patient can experience episodes of severe depression and then alternatively experience manic episodes of high energy, excessive behaviour and ultra happy moods.”

So you can see why health professionals are taught Greek/Latin!! It makes communication so much simpler and easier. Saves a lot of talking in critical situations.

But for me, instead of hearing a few blah blah words, I get the whole lot dumped into my brain. Which is a lot of information. Especially about things that aren’t confirmed and are only a “query” or possibility. It changes the way I scan myself and look for symptoms. It changes the way I think about myself. It confirms the negative symptoms. Sometimes it confirms that I’m doing okay. Sometimes it confirms ‘maybes’. Sometimes I just don’t want to know!

A few colleagues have said to me at different times: “so what antidepressant did you choose?”

I guess it’s a tendency of health professionals to semi-diagnose themselves, think out a probably treatment plan and consider the pros and cons before going to another health professional, usually a doctor.

But that’s just not how it has been for me. I got sick. I felt awful. I got desperate.

So desperate that I just wanted to put myself in someone else’s hands, to not have to take care of myself anymore, to give the responsibility over to someone else.

I didn’t want to think about treatments, I didn’t want to know about the decision making process, I didn’t want to have the burden of deciding which antidepressant was most appropriate for me, a 26 year female of child bearing age with irritable bowel syndrome, reflux, previous clotting disorder and high blood pressure while taking an SNRI, venlafaxine, exercise-induced asthma, previous failure of therapy while taking an SSRI, fluoxetine, feeling suicidal despite taking 2 antidepressants for the prior 2 months.

I didn’t want the knowledge. I didn’t want the automatic analysis that I’m trained to give to any clinical scenario. I didn’t want to have to think it all out. I just wanted someone else to figure it all out and fix me.

So my message: think before you ask for knowledge, before you demand a translation from your doctor. Do you want the knowledge? Will you be able to handle it? How will it affect you? Do you really need it?

Or is it better to sit back, trust the doctor, and believe in the treatment that they have tailored specifically for your personal characteristics?

I’m not suggesting blind faith, or unearned trust but my recommendation is to think about what you ask of the doctor. Because they do have to give you the answer, even if it will only harm.

Because some words you can’t un-hear or un-read. Like when a doctor writes an insurance report for your income protection payout and gives it to you unsealed because you understand this stuff. And you read it and the reason he’s written for you not being able to return to work is that you are:

“totally incapacitated”.

That will hit you like a brick! It will make you re-evaluate your progress and current state of sickness/wellness. It will get you wondering if you are actually worse than you thought. It will get you wondering if you are useless.

It will start a chain of self-doubt and pondering. Suddenly you’ll think “can I” instead of “I can” or “I will”.

Am I actually a capable person who lives and breathes and cooks and cleans and drives and makes decisions and has responsibility?

Or is that a delusion? Am I actually not doing anything at all?

KNOWLEDGE IS POWER.

But can you manage the power or will it overwhelm you?

BE CAREFUL WHAT YOU WISH FOR.

Are you wanting to know details that can have no advantage or benefit to you, and are best left well alone to someone else’s responsibility?

Take it from me, if you will: you may save yourself a load of stress and anxiety, sleepless nights, fretting and worrying by leaving be details that will only weigh you down.

Let alone and be free.

wooden boat on an Amazon tributary at sunset

Peaceful serenity at sunset in the Amazon Rainforest near Puerto Maldonado, Peru