You know your life has hit a high point when you are sitting in a public toilet waiting to be let out. aka The Claytons Accessible Toilet.

(Sign to the Phantom Accessible Toilet.)

The knock I’d been dreading came suddenly through the door. A hesitant male voice, muffled by the thick door,

“Are you ready?”

“Not yet. Sorry.”

The muffled voice announced that he would be back in a few minutes, and I yelled my thanks. My unenthusiastic tone matching that of the disembodied voice coming from the otherside.

I sat on the toilet with my head in my hands knowing that the voice would be back and this time I would need to be ready. I didn't expect the complete stranger to come back a second time. I’d already apologised once. Because you always want to apologise to a stranger for your bowel and vomiting habits.

Why today? Today was the day that my body required a toilet. Now! Repeatedly. Which doesn't matter so much when I'm home. Or when I have someone with me. But alone. With weak limbs. Limbs more weak than normal, as any other symptom escalation leads to increased weakness. But today I was alone. My companion in another part of the hospital attending their own needs.

The other part of the hospital.

As there are no accessible toilets in the busy section of the hospital where he is being attended. Although there is a sign pointing to an accessible toilet. The phantom toilet that doesn't exist despite the bright blue sign and the arrow. The one I sent him off to search for, but instead it led to two sets of able bodied toilets, but no accessible version.

Instead I must navigate the convoluted hallways to one of two accessible toilets in another part of the hospital. Toilets that I had initially been escorted too by a staff member as the route was too hard to explain.

And now I sit here alone waiting to be let out.

Blanche DuBois' classic line from A Streetcar Named Desire, comes to mind. “I have always depended on the kindness of strangers.” This time because someone keeps designing so-called accessible toilets with doors too heavy for weak arms. Doors that wont even click to stay open so I can roll in without being hit and getting jammed, should I actually be able to open them. The Claytons version of an accessible toilet.

Weakened arms and slowed movements after having to self propel to the distant toilets, and then I couldn't even open the door. A strange man saw me struggle, came out of his office to help. The damsel in distress. Because I love that feeling. The feeling of dependence. Ugh. It’s bad enough when it’s a regular door, but a toilet just adds to the loathing. The embarrassment. The frustration. I have no desire to be Blanche for even the most basic of life's events.

And so I sat in the toilet waiting to be let out. Twiddling my thumbs. Looking up at the roof. Waiting. Because the accessible toilet failed at accessibility on the door step. Because being stuck in a toilet is my life long dream.

I unlocked the door and waited.

And waited.

Until a woman pushed the door open onto me and my chair. Surprise!

She shrieked and jumped back. The man from the office came running. And I turned a bright shade of red. Too many cooks spoil the broth and too many helpers make getting out of the accessible toilet a farce of awkward arms propping doors and helping to direct what I can direct myself. Nothing like having to duck a strange armpit, or two as both arms are extended over your head, bums stuck out awkwardly and tip toes engaged. And everyone is embarrassed and awkward. And overly accommodating and solicitous.

I rolled off as quickly as I could. A snails pace with weakened limbs and hands that refused to grip the wheel rims properly. Refusing offers to push me to whereever I need to go in the hospital.

A hospital.

Where people are sick. And injured. In wheelchairs and on crutches. Where weakness is high. Where access may be needed, now! Not when you can find someone to let you in.

Accessibility is so much more than a big toilet and a couple of rails.

It is not accessible if I must ask for help to open a door. If I must rely on another. If I must sit inside, stuck, not even a button to push for assistance.

I am grateful to the man from the office and even the shrieking woman. Neither had to help me. But if they had not it would have been grossly problematic given I had rampant nausea and had manage to forget both my puke bag and antiemetics.

Accessible means I can pee, or poo, or puke alone. Accessible means I am on even par with those who do not have medical issues and disability and who can pee, poo, or puke with wild, independent, abandon.

So often I go places where the doors are so heavy I cannot access them alone. Or if automated close so quickly that I end up with bruises or stuck in the doorway.

I went to a conference earlier this year. When I questioned the organisers about accessibility they said the venue had assured them there was an accessible toilet.

And there was.

Four floors down. Through two sets of doors I could not open and down dodgy hallways and through storage rooms. Accompanied by a security guard. Who had to be paged. While I waited at a front desk. A security guard who in the end had to push me back through the maze as my arms gave out.*

Totally accessible.

I went to a medical clinic earlier this year and could not access their accessible toilet thanks to the placement of two small doorways at right angels and an automatic door which kept closing on me, all of which prevented me from being able to move my chair to get in or once inside out again. My swearing and banging alerted my husband to my predicament and he had to physically lift my chair to be able to navigate the small awkward space. If alone I would not have been able to pee.

Or the major Melbourne hospital that had a locked accessible toilet with a sign saying to go to security for the key. Only when my son went to collect the key, no one was there. He then went to the information desk who couldn't tell him where an alternative accessible toilet would be located and we were directed to try another floor. Nothing like a quest to find a toilet when your bladder is about to go all B-grade disaster movie as the dam breaks.

The examples go on and on. And don't get me started on their use as storerooms.

Being able to access a toilet is a basic need. And yet even when there are dedicated toilets something like the weight of a door, surrounding architecture and distance, can make it inaccessible from the get go.

No one should have to rely on the kindness of a stranger to pee. Or have the indignity of being stuck inside unable to get out until that stranger or another comes back.

It's not that hard.

Michelle

*All credit to the organisers who followed up my complaint and were angry on my behalf.

Sing it Beyonce! I want to be an Independent peeing Woman!

Hiding in Plain Sight.

I'm circling life. It’s a defense mechanism. A preservation technique. I’m pretending I am regular. Just like all the others in the cafe today. Fake it till you make it. Watch and learn. Impostor in the midst.

I am at a table, alone. Writing words and sipping coffee. I look like all the rest. You can’t pick it. You can’t pick I'm wrong. Broken. I am just a woman scribbling words on a page, sipping bitter coffee from a small red cup.

A strong long black.
Four word.
Four words I say when I sit in any cafe.
Four words I usually cock up despite their familiarity.

There’s no one here but me. I can’t hand my order to another to deliver. So I pause and stumble, over articulate. The words in my head get lost on their way to my mouth. Distracted by bright shiny objects until they meander on their way to my lips. At every step there is a pot hole or tiger lying in wait. A chance to be stolen or corrupted before their simple message is delivered. The waitress didn't spot the effort that made my order possible. She simply waited, half distracted. Her gaze alternating between her notepad and the tables just outside the large concertina windows. An automatic “Great!” leaving her lips as she writes down my order, already halfway back to the counter.

It’s hot in here. Spring days are warming. The air is stuffy. Fans move sluggishly high overhead, weighed down by thick air and errant cobwebs.

The veins on my hands dilate and swell. A three dimensional knotted road map radiates out from the back. Blue tendrils reach down over my fingers and rope up over my writs. I sip tepid water from the stout glass, a half-hearted attempt to rehydrate. And move my hands one way and the other, forcing blood through sluggish vessels. I play with the skin. Pinch the dermis and watch as it remains standing in peaks all over. Intellectual me knows it is beyond any hope of oral hydration. Ostrich me shakes it out and rubs it down, and continues to sip.

My ankle pulses. The swelling is beginning. The damage from the lost nerve and resultant neuroma demand recognition. Alerting me to the stupidity of deciding compression stockings were to hard to don with joints popping and weakened hands. Errant joints can be relocated far easier than blood can be forced against gravity.

I drop my pen as my grip loosens. My writing becomes shaky. The letters no longer form correctly. Another force is at work. The pen over shoots and slips. Pieces of words are disordered. My wrist aches with the effort to control the now serpentine pen that writhes in my fingers.

And still no one notices.

I sip slowly, the cup resting against my lip. Propped to hide shaking hands. Sip millilitre by millilitre. Little more than a light brush on the tongue. I play the part of coffee drinker number 3. An extra, with one line of dialogue. I want to change it. Make it “These pretzels are making me thirsty”, but don’t know if the twenty-something waitress will understand. Or if it’s utterance will break character and my status as ‘other’ be revealed.

My walking stick blends into the black divider next to me. A quick glance as staff and customers pass by will never give them the data they need. You can’t spot it, the sickness and disability. I hide in full view.

Pretender. Actress. Playing the part. The music mutes in my ear and the world shifts to grey. It snaps back and the moment passes. The pause in my pen not enough to raise suspicion.

I tell myself ‘they’ are all okay. That no one else in here is like me. In tattered pieces. They are all perfect, with perfect lives. My logical brain knows that odds are at least one other person in here has a disability. That even more live with illness in some form. Maybe even one like me, wading through disappointment, confusion and pockets of fear. How many are also playing the part? Who see me as their version of perfectly regular. We are an ensemble cast, where none of the actors know each other.

I look longingly at the cakes in the display case. Not one I can eat despite careful inspection. White tags with block letting shout out seductively. “Just a little bit wont hurt.” “Just a bite.” “You can take the rest home.” “It’ll be worth it.” I hear the woman next to me “I’ll have a slice of the Hummingbird, thanks”. In my head a snide, bitter, voice mimics,“I’ll have the Hummingbird”. I shove it down and sip my cold brew.

I tap my feet and stretch my back. Shake my hands and rub my forehead. The clinking of the cups behind the counter seem distant as I start to slump. And still the mask holds in place. I alternate between Melpomene and Thalia, but to all around me I remain the forty-something women sipping coffee and writing, intent on her notebook.

Tick tick, the minutes pass.
A half hour pit stop.
Alone.
Which is rare.

But I push myself to try more. To take the risks. To be like all the others. Because while I act the part I can pretend that there’s no bad news. That there’s no more pieces to the puzzle to cloud the picture further. That I'm not still waiting and hoping. For clarity and answers, that part of me knows are unlikely to eventuate, but just may. And I'm not sure what scares me more.

But for now I sit camouflaged on the black faux leather, at the square black table and sip the dregs from my cup. Just another customer. Like any other. Regular. Normal. Okay.

Michelle

I do like the last lines of this song (though my man is still here) but my nerves are shot and my hair full of glitter under the dye, and I do love to sit and sip a long black. Sing it, Ella.

My nerves have gone to pieces

My hair is turning gray

All I do is drink black coffee

Since my man's gone away

Up and Dressed

(Trying to do my best Delvene Delany. Look at this fabulous clocktower.)

I've been getting dressed since last month. I've missed a couple of days here and there where my body was more blancmange than viscera and bone. But since September I've been dressed more days than not. I hit 17 days in a row which is the most in, well I can't really recall how long, because it's been that long. I made a decision to get dressed each day. Preferable with a shower. Unlikely to include hair brushing. And not in any way likely to include make up.

It sounds small and ridiculous to mention. But I know that a whole host of readers will understand. Not just those with a form of Dysautonomia. But a whole host of people who live with chronic illnesses and disability that can make even the most commonplace tasks difficult. Time was getting dressed was just something that I did. I would dress for work, and for uni. I'd dress to take my kids to school or go to coffee. To potter in the garden and do housework. For most people it is an act with no thought. Maybe some irritation at having to dress in a certain way for work. Or a pain to get their hair dried and styled for work while multi-tasking making school lunches, looking for a misplaced shoe, feeding pets and making sure the iron is off. Pyjamas on weekends or on holidays were bliss. A treat to be savoured.

Recently I participated in Helen Edwards', from Recycled Interiors, 30 Days to a Happy Healthy Home challenge. When I say participated, I did bits and pieces that gave me the biggest bang for the buck, eg filled my home with flowers, and did the rest vicariously though the many fabulous photos people shared. But there was one day where the task was to stay in pjs all day. I looked at it and felt absolutely no connection to the task. I am in pjs most of the time. And their wearing didn't represent happiness. I read her piece on pyjama days and tried to pick where that simple act had moved from joy to chore. But there was no single event. Just a gradual movement. It snuck up when I wasn't looking. It was easy. And suddenly there I was. Miserable in pjs, not even good pjs, but sad comfortable flannelette that really should have been binned a long time ago.

In 2011 I was lucky enough to win a shopping spree with the lovely Phoebe from Lady Melbourne (more here). My request back then was to find pj alternatives. Fashionable comfort. I knew back then that I was slipping. And I needed a boost and Phoebe and the stylist delivered. I needed it back then and I need it now. Bad news, new problems and a perceptible decline have weighed me down. More than I want to admit. And the spiral down was beginning again.

I have written a lot about my love of fashion over the years (eg here, here, here, here, here, here, here). I've gone out of my way to find fashionable compression stockings and comfortable clothing. I applaud, Karolyn Gehrig's #HospitalGlam initiative. I even used fashion to raise funds for Dysautonomia research. There is a need to hold onto my old self who loved fashion, within the constraints of my health and my non-existent budget. But I get stuck at times.

When my body is hurting and my heart along with it, doing becomes difficult. My clothes tend to reflect my mood and my mood reflect my clothing. So I made a decision. I decided to get dressed. Not only get dressed, but take a photo to prove to myself that I did indeed get dressed. I'm not sure how many days I've done it now. In a sense the number doesn't matter. When I look through my Instagram I see photo after photo of me dressed. It reminds me that I achieved something. A small something but a something all the same. It's surprising what that does. It tells me I can. It tells me that I am still here. It tells me that I am living life. A changed life. But a life nontheless. I look at the pictures and there is a hint of the old me. A hint of what still exists under the layers of illness and exhaustion.

A friend asked me if it was worth the effort. And the simple answer is, yes. For me it is wholly worth the effort.

Will others agree? Some will and some wont. We all have to find what works for us. What is worthy of the effort. What it gives back.

For me getting dressed and remembering fashion is worth the effort. It helps my mood. It reminds me of me. There has been a joy in uncovering clothes I had forgotten. Clothes that have stories and hold memories. I have been a bargain hunter for years. $20 was always my magical figure and one I still use. The better the bargain the more satisfaction I felt. I don't pretend I have style. And I've never really followed trends. But it's not about that. It's an expression of me. And in the end it brings me joy.

(All frocked up and occasional places to go besides my laundry or house entryway.)

At a time when writing and 90% of other parts of my life are difficult it is a small act that is achievable and meaningful. For me it works.

Plus, I want to get back to a place where being in my pjs is a luxury, that I can enjoy.

Michelle

If you want to follow along or join in, please do. You can find me on Instagram @michelle_roger (As it's sort of evolved organically I haven't really thought of a hashtag though I've been using #upanddressed as that's pretty much my achievement.)

Given I've just seen the David Bowie exhibit at ACMI this seems an appropriate musical accompaniment. Go along if you can it's fantastic.

Smile.

(source)

The last couple of days I've made a change. I decided that I would try to get dressed everyday. I know getting dressed plays into my mood. Feeling physically bad leads to feeling mentally bad, leads to feeling physically bad, leads to...it feeds off itself. Feeling bad I am more inclined to stay in my pjs all day. The effort involved with showering and dressing is hard to explain if you're not chronically ill. But it's enough to know that it's prohibitive, and soon my appearance mimics my mood and body. When I get stuck in those ruts I feel worse and I really have to fight my way back out. When I put up the first photo yesterday I added a bracketed message about why I was't smiling.

Today when I shared the Instagram post on my Facebook page I wrote the same message....

(Can't smile as my facial muscles wont cooperate today, Mr Grumpy always says that it's my 'tell' when my face is flat and expressionless. Joy.)

....and it irritated me.

I've stewed on it all day. Why did I write it? Why am I apologising for something I have little to no control over?

The reality is that it's a physiological issue. Since I became ill I have developed progressive issues with my facial muscles. Initially, it began with a left-sided weakness that would appear when my symptoms were flaring. The left side of my face would become lax. I'd end up with ptosis and my mouth would droop (my delightful children called it Stroke Face, and it was always an indicator I was really unwell). When my overall symptoms improved, it would improve.

Soon the sensation on that side was permanently affected. It felt swollen and tingly. When I touched the flesh of my cheek it felt odd. Soon the droop stopped completely resolving. Now it is more obvious even on good days, becoming worse again when my symptoms flare. My eldest son, a photographer, took a photo of me last year and the difference in the muscles of my face was clearly evident when I attempted to hold my mouth shut. A wasting on the left, not matched on the right. A wasting in muscle that was matched by increasing weakness. The more I concentrated and tried to force the muscles the worse they behaved. From chin to hairline none were doing what they were supposed to do.

A Single Fibre EMG (SFEMG) revealed myotonia in the left side of my face two years ago. Since that time my control of my facial muscles has slipped. I try to smile and I can't. Or I grimace. When I force my muscles into positions they jump and twitch. The top lip on the right side of my mouth curls up spontaneously. Every now and then I get lucky. But the frequency is decreasing and the pain it causes in my muscles on the left is often not worth it. Unconscious smiles occur, but try to force one for a picture and it becomes increasingly difficult or impossible.

Mornings my face is blank. No expression. I rub my facial muscles and move my jaw to wake them up, but it can take hours. I find myself absently moving my jaw side to side, up and down, constantly trying to shake the weird sensations and get the muscles to comply. Some days it'll remain expressionless from sun up to sun down, no matter what I do. Apparently the complete lack of facial expression is the family's new indicator that I'm not doing well.

I look grumpy or blank. Not by choice. By physical pot luck. And still I apologise and explain.

There is such a pressure to smile in our society. Especially if your'e female. If you don't, you have Resting Bitch Face (RBF). I think about celebrities like Kristen Stewart who are constantly criticised for their lack of smiling. Hell, I've made comments myself. Now I sit here typing and I can see my own RBF reflected on the screen and I think, enough.

As a woman you are told constantly how to behave and what you should look like. Like many others I've heard many variations of the classic line, "Smile, love. It can't be that bad". Or another favourite, "you're so pretty when you smile". Because as women we are supposed to smile, no matter what. And if we don't there is something very wrong with us.

I know I've internalised that line of thinking.

I know every time I apologise for my lack of smiling,
or look at a picture and my internal critic goes into overdrive at my grimace or RBF.
Time to say, enough.

Enough, Michelle.
Enough of beating yourself up for what you can't control.
Enough of feeling self-concious for not smiling.
Enough of explaining.
Enough of apologising.

The people who know me, know I'm a happy person.
And those who don't and judge, don't matter.

If not smiling is the worst thing I do, I think I'll be okay.

Michelle

*The idea that as women we should always smile is so ingrained in our society and I am not alone in being over it. Check out the Stop Telling Women to Smile campaign and art series.

Anyone who's read the blog for any length of time will know of my love of PJ Harvey. Her songs are so raw and unapologetic and my song choice for today is no different. Sheela-Na-Gig is unapologetic in composition and lyric, and fits my unapologetic mood today. As much as I hate using wikipedia as a source it has a reasonable explanation of the meaning behind the song, here.

Life with Chronic Illness is Incredibly Stressful. Ask the Question: RUOK? Not just today but all year round.

It's RUOK? day today in Australia and it's time to get involved. This initiative began in 2009 and has grown every year since. As the site explains:

"R U OK?Day is a national day of action dedicated to inspiring all Australians to ask family, friends and colleagues, ‘Are you ok?’ By regularly reaching out to one another and having open and honest conversations, we can all help build a more connected community and reduce our country’s high suicide rate."

"Connection and open, honest conversations are good for our wellbeing – whether or not we’re struggling with a problem. It helps us to feel valued and supported by the people around us. There's also an emerging body of research which links supportive social relationships and a sense of social connection with protective factors in suicide prevention."

As I wrote here the incidence of mental health issues such as depression or anxiety, are very high amongst those who live with chronic illness. As a group those with chronic illness are faced with illnesses and disability that are measured in years or, in some cases, life times. The physical toll is often high, but it is the mental and emotional toll, which often goes unknown by all but the sufferer, which frequently creates the greatest burden. It is important that we start the conversation about the mental health burden of chronic illness, particularly when it can often be managed successfully with appropriate support.

The issue is complex. Stress is often multi-factoral and many are reluctant to discuss their difficulties for fear of being perceived as weak or the stigma associated with mental health issues. Dysautonomia is an umbrella term for a complex series of disorders that arise from the malfunction of the autonomic nervous system. Some forms are rare, but even amongst the more common forms, they are rarely discussed and not easily identified. Patients often experience long and stressful journeys to diagnosis. Even once diagnosed, the complexities of the disorders and lack of information and treatment pathways lead to ongoing high levels of stress. Add to that the severity of sometimes disabling long term symptoms experienced by many and it is not surprising to find that if actually asked, many patients will respond that they may be functioning but they are not necessarily OK.

Those with chronic illnesses that are rare or poorly understood such as the Dysautonomias, often face a long and soul crushing journey to diagnosis. With symptoms that are frequently vague or fluctuating, patients are told "it's all in your head", "you just need to get out more", "you're depressed". These comments are rarely followed up with appropriate psychological support, instead many are faced with insinuation or outright accusations of malingering or lying. The story is repeated again and again on forums around the world. Even long after diagnosis these words continue to haunt patients who continue to hide their stress levels for fear of reigniting old accusations.

Being a chronic illness many find that their friendships and social relationships fall away over time. Friends who initially came around with a casserole or offered to take a child to school, call around with ever decreasing frequency or, simply disappear. Social isolation is a huge issues for many. Especially those patients in isolated or rural areas, or those in countries where little is known of the disorder. Even in larger cities and centres where there are more patients, it can be difficult to organise face-to-face meet ups with patients who are fatigued, have mobility issues and, thanks to the quirks of the disorder, may have to cancel engagements at the last minute. Whilst fellow patients may understand this, often friends and family do not and social invitations slowly evaporate. In my own case, many friends I thought would always stay by my side disappeared as my ill health increased. My circle of friends decreased over time until now I can count them on one hand. Although I would say chronic illness does aid in rapidly sorting the wheat from the chafe and whilst I may not have the same quantity of friendships the quality is far better. (online friendships have been a saviour, but that is another post).

Intimate relationships change. Husband and wife, becomes carer and patient. Trying to maintain a marriage in these circumstances can be very difficult without dedication. Often outside guidance and counselling is required to traverse the new and changing relationships. Marriage breakdown is common and even dating is often difficult. The strain of constant illness, inability or infrequency of intimacy, financial concerns, difficulty in maintaining roles such as house keeper, parent or cook can all mount to create problems in relationships. Additional difficulties can arise when a partner requires aid with personal care needs such as showering and toileting. Where does the role of husband stop and carer begin? Navigating these changes can be very difficult for couples many of who attempt to do this in private for fear of embarrassment or feeling like a failure. 

Parent/child relationships also change. Adult children may be forced to move in with aging parents. Conversely, young children can become carers for their adult parents. Parenting with chronic illness is difficult. Being able to care for small children when you can barely stand or are worried about passing out can be both heartbreaking and dangerous. Guilt is common. Even when the children enter the teenage years they may be forced to care for sick parents or are unable to socialise with friends and relationships can become strained. 

Many teenagers with Dysautonomia are unable to go to school or participate in regular teenage pursuits such as parties or sports. They are reliant upon parents at a time when they are normally asserting their independence. Again conflict can arise and strain exists for both patient and carer.

Work commitments are often challenged and unemployment is not uncommon for many patients. This creates not only a financial burden to families, but also a loss of identity. The first question asked at social functions is often "what do you do?" For someone recently unemployed this can be difficult to deal with and often those asking the questions are stumped as to what to ask next. For many, a career equals identity. We understand when someone says they are a doctor or teacher. There is a whole social schema that goes with each label. For many, myself included work was a joy. After years of study and working hard I had a job that I enjoyed and felt was making a difference in the lives of others. To give that up after a year of battling increasing Dysautonomia symptoms felt like the ultimate surrender. I felt like a failure. Added to that was the guilt of the financial burden I was placing upon my husband which was and continues to be high. 

Independence is often the first casualty of chronic illness. Simply being able to do the grocery shopping by yourself can be difficult. Many patients who experience frequent syncope are no longer allowed to drive which leaves them reliant on others for transportation. Being able to garden or go to the movies can be a Herculean task. A patients' identity can often seem lost with each small piece of independence that disappears. Spontaneity is no longer possible. A friend calling over for a quick, unexpected coffee can be overwhelming. Patients need to prepare for outings and entertaining through rest, medications, extra fluids and salt, after which they still may be unable to participate thanks to the unpredictable nature of the disorder. It is the normal social situations that others take for granted, particularly the small things such as going to a cafe, that are frequently reported as most missed by patients. And the inability to do such simple things often serves to highlight what they have lost.

Cognitive problems are also common in Dysautonomia thanks to poor cerebral perfusion, fatigue and medication issues. Patients are embarrassed by lapses in memory, inability to complete simple tasks, read a book or follow a conversation. For many, on a bad day, speech is impaired both cognitively and mechanically. Many withdraw from social interaction as they are either self-conscious or simply unable to take in all the competing information.

All of these issues are on top of the physical symptoms of the disorder with which patients contend with 24/7 (tachycardia, bradycardia, hypertension, hypotension, syncope, pre-syncope, weakness, fatigue, poor thermoregulatory control, gastrointestinal symptoms, urinary frequency, seizures, to name but a few). Whilst the physiological symptoms of Dysautonomia can be difficult to live with, it is the impact that they have on daily life, the social, psychological and emotional issues that many patients find the most challenging. 

The support for those suffering chronic illness is greatly lacking. Care fatigue ensues amongst friends and family as time passes and a patient either doesn't get better or, gets worse. Chronic illness doesn't fit into the normal sick paradigm associated with acute illness. There is no easily identifiable illness or injury, no clear and distinct treatment path and frequently no identifiable resolution after which the patient can resume their regular role in society. This leaves chronic illness patients vulnerable both medically and more importantly psychologically.

People stop asking if you're okay. As one of my readers wrote, "when I asked her why she didn't call to ask how I was, she responded "it's just your normal. I thought you were used to it"". Chronic illness patients are frequently forgotten until a crisis occurs. We develop means of coping, putting one foot in front of another, because there is no choice. There is no resolution as the disorder is chronic, you must learn a way to cope. Patients may smile and laugh , because they have learnt to find humour in the small things, but that doesn't mean everything is okay. It doesn't mean they are okay. It doesn't mean they are coping. Many are barely holding it together. Being strong for years on end is difficult. Sometimes we all need to be asked "R U OK?" 

Please take the time to ask the people in your lives R U OK? If you have someone in your life living with a chronic disabling illness like Dysautonomia take the time to truly ask "R U OK?" It wont take long and they will appreciate that you care. You don't have to solve their problems, just listen and be there. Start the conversation. 

If you are unsure how to ask someone, RUOK? Day has resources available. 

Importantly, if you're the one who isn't OK, but you're not sure how to tell someone or ask for help, they have information and resources here. 

You don't have to be in Australia to participate. Nor do you have to stick to one day a year. You can ask "R U OK?" anywhere, and any time. Start the conversation and change a life.

Cheers Michelle :)


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When the world is falling freshen up your flamingoes and listen to Ben Lee.

New symptoms, medication side-effects, and a cry on the bathroom tiles. That has been the last few days. Well, weeks in truth. And exhaustion. I can't forget exhaustion, even if I wanted. It's perched on my shoulder weighing me down, be it in bed, or on the couch, or lying on the grass outside.

Shut down. My body. My brain. The world. All of it.

My recalcitrant body is winning at the moment. I'm not sure we're even playing the same game anymore. All the old rules no longer seem to work. So more tests, more symptoms, more tests, more....ad infinitum.

Words don't come. Thoughts jumble, tumble, and fall away.

Pieces fall. And no one picks them up. I'm not sure that they can.

I sat in the garden and let the new Spring sun fall on my face. I looked over at Natasha and Boris, my garden flamingoes. They were faded and battered. Yellowed, pastel pink enamel, looking used and sad.

I focused on the faded colours and couldn't let them go.

Paint was bought.

Beaks and legs were covered in Glad Wrap and sticky tape.

Two layers of pink enamel and they were alive once more.

It's a small act in the big scheme of things. But it's something. I slept after. I lay down in between coats. But when I look out in the backyard today and glimpse their shiny pink feathers it fans a little spark in my heart. Keeps it alive for another day.

It's the small things that make it okay when the world is pulling you under and your reserves are spent.

#lookingup flamingo in the evening.

Michelle

In my tired state I couldn't find a clip to accompany the Ben Lee song, Everything is OK, from his new album Love is the Great Rebellion, but I like it a lot. It's simple and beautiful. There's a central couple of lines that are stuck in my head at the moment.  

(Here's a live stream version)

Everything is okay,

even when it's not

even when it's not. 

Goat Suckers, Horse Kissers, and Pig Ticklers AKA Just Another Day in Chronic Illness.

(White-winged Nightjar, Eleothreptus candicans, source)

"What is another name for a Nightjar?" asks the host on the UK quiz show blasting from the wall of the radiology office.

Goat Sucker, Horse Kisser, and Pig Tickler, are the options offered up to the elderly contestant. Her floral dress, spectacles and hair set would not have seen her out of place in an episode of Keeping Up Appearances.

Is a Nightjar where you keep your Night Soil? A look of panic emerged on the face of Hyacinth's neighbour. Apparently not. While visions of old chamber pots ran through my head I learnt that a Nightjar is also known as a Goat Sucker and that none of the options were a euphemism for some sexual contortion. It's a bird if you're interested. No joint poo receptical or Karma Sutra involved. Too much time in gastroenterology offices means I have poo on the brain. Living with a juvenile husband also means euphemisms pop into my mind by default.

TV in waiting rooms tends to be dull, so a low budget British quiz show, hosted by the guy from Law & Order UK, was welcomed. Although I should add a disclaimer. I was slightly delirious from walking/stumbling ten thousand kilometres to the door of the radiology office, which despite the sign is not near the obvious carpark. Instead it's down a long walkway around a couple of corners and at the back of the building, where there is another hidden carpark. So really, a mind numbingly boring episode of Law TV from one of the infomercial channels may have been deemed exciting by that point. Hell, I may have even enthusiastically paid $5.45 a minute, for a reading from Psychic TV, by the time I finally wheezed that I was there for  my 3:45 ultrasound.

A woman who would not have looked out of place as a screw in an episode of Prisoner, sat at the top of ramp, a series of light panels in front. As she smugly regaled the serfs/contestants below with her knowledge of monotremes and spiny anteaters, I mumble that she shouldn't be so smug if she doesn't mention they are actually known as echidnas. But she can't hear me, and the woman two seats down who can, looks like she'd rather move further away from the strange wheezing woman talking to the TV.

Tap tap tap. Tap my foot and squirm in my seat while a guy with a magnificent mullet answers another question. Drink one litre of fluids before the scan, she said. Don't pee after two, she said. Damn it's not a mullet after all, just really long hair pulled back at the top. You'll always be Mullet Man to me UK quiz show contestant. Because I need to focus on a non-existent mullet to stop thinking about the litre of water I have consumed to have a full bladder ready to squish and scan.

Tap tap tap. Call me now please or you'll have one litre of water on your ugly brown and black carpet squares.

Governess Merciless. Oh this just gets better. The screw at the top of the ramp is a wrestler. There a mention of red latex. Oh British TV, I think I love you.

Hold the water, even when you're there for abnormally frequent peeing. Hold it in. Hold it in. Luckily I threw up some of the litre so it's not quite so bad. Well from a pee on the carpet perspective, not so much from a watery spew as you hold onto the side of the porcelain at home perspective. But I have topped up since so who knows how much is in there.

Come on people. Scan me. Let me pee or puke. A gross choose your own adventure. It's coming out somewhere. Once upon a time I could drink water without wanting to puke. I could also eat without wanting to puke. And not worry about peeing in a waiting room. Or at least I think so. My memory is pretty hazy these days.

Here we go. Maybe. No? The other guy left. There's only me now. Please hurry. Tap tap tap. Squirm. Rearrange. Wait. Watch Mullet Man and wrestling screw in their battle of wits.

3:45 comes and goes.

Tick tick tick. The clock behind the admin desk measures the increasing sensations in my nether regions with each nerve rending tick. Tick tick tick could become drip drip drip any second.

Wait? What? It's my turn? Okay.

Stumble down the corridor and into the mood lit room. Lie on the table while a stranger rubs KY on my stomach and scans my bladder. He hesitates.

There's only 40mls in there. What? No that's not possible. I drank it all. I feel like I need to go.  I topped up after my spew. Where has it gone? What? I have to drink more? More waiting? Just 40 minutes more. At the sight of my crestfallen face, he repeats the just. Like that makes it better.

Back in the waiting room and more UK quiz show. Less excitement and interest this time as I am handed more cups of water to drink and wait. Wait wait wait. Pull a magazine out of my bag and read.

Kegal, kegal, kegal. Squirm and read. Read and re-read as each pang in my bladder says I need to pee. More water. Wait. Can't concentrate now. Did you know that a decrease in cognitive ability has been recorded in people who really need to pee? People study these things. When you are busting to pee, your brain turns to mush. Add that to pre-existing brainfog, and I may have been the intellectual equivalent of a rock, sitting on the orange chair staring and mouth breathing at the magazine in my lap.

The admin lady is packing up. People are leaving. Come on. Scan me. Scan me. Tap. Tap. Tap. Squirm. Squirm. Squirm. Kegal. Kegal. Kegal.

Finally. 3 hours since I last peed I am scanned again. 80 fricken mls.

My body is the Tardis. And somewhere in the endless interior of my body, is a well of water. Sitting, waiting, refusing to budge. And yet I still need to pee.

I wall walk out to the waiting room once more. The UK quiz show is over. I pay for the pleasure and wait for my disc. Maybe if I asked Governess Merciless to order the water to stop loitering in my stomach, or behind my pancreas, or near my patella, or wherever it's hiding, it would move to my bladder quick smart.

After 3 hours I make my way back down the concrete and wooden corridor to the car, contemplating the fact I can't even get a scan right.

But at least I have learnt something new thanks to Hyacynth Bouquet's neighbour, Mullet Man and Governess Merciless.  Night Jars are Goat Suckers and as Wikipedia tells me Goat Suckers are Chupracabras. And last night I watched an episode of Grimm about Chupracabras. Life comes full circle. And just like that, all that water finally found it's way out at 5am this morning.

Michelle

And because I'm pretty sure my bladder and body are telling me they don't care what I want, I give you Transvision Vamp and Baby I Don't Care (1989).

The Lie of Giving Up and Falling Apart.

"Giving up is easy" says the meme up above.

"Falling apart" is bad.

"True strength" is only when you don't give up or fall apart.

This is a clear and persistent belief in our society.

Having fallen apart on more than one occasion I am clearly weak. I have failed the true strength test.

And yet here I am still kicking on. Loser that I am.

I understand why people post memes like this. I understand that for some they are indeed inspirational. But the simplistic inspirational narrative in these kind of memes irritate the hell out of me.

What exactly is wrong with falling apart? And what exactly constitutes falling apart?

There are times in life that things reach crisis point and you fall apart. You can't cope. You cry and withdraw. Shake your fists at the sky and scream about the injustice of life. There are times when it feels like the tide of human existence is going to swamp you and all you can do is feel despair. You aren't falling apart you are experiencing real emotions and behavioural reactions to a stressful life.

When I see memes like the one above I think of the countless emails I receive from fellow patients who are overwhelmed not only by their physical symptoms and social and psychological stressors associated with that, but also the overwhelming sense that they are failing or doing illness wrong because they can't hold it together.

Illness is stress. Chronic illness often means that stress will never fully go away. People aren't falling apart when their stress levels reach critical levels. They aren't giving up when they voice that stress and can't hold it all together. They are human beings, experiencing real and valid emotions to a prolonged highly stressful situation. We should not be jumping on them with judgements about giving up and the evil of falling apart, but offering them support, a place to voice their fears and sadness, and direction to appropriate mental health groups to help them navigate the complex and stressful world of chronic illness.

Should we add yet another burden to the list, pretend it's all okay and hold it all together, at least in the public view?

As  I've written many times on this blog, giving voice to the negative aspects of illness, not coping every second of every day, and admitting you are overwhelmed is not giving up. In a way it requires far more courage to admit the truth of falling apart in face of a society that values the perfect presentation of a person with illness who always "holds it together."

Inspirational sick person narratives are rife.

Flawed, complex sick person narratives are jumped on and wiped away with relentless regularity.

Admit a flaw and you are giving up.

Admit that it's hard and you are giving up.

Admit you can't hold it all together all the time and you are giving up.

Giving up by admitting it's hard and it falls apart, isn't the easy option. A false face is the easy option. No one questions the perpetually,perky smile, I've got it all under control, narrative, because that's what the world wants to hear. To salve their own fears. Sometimes to salve our own.

If we truly want to promote mental health we need to move away from judgemental narratives about giving up and that falling apart is the worst thing you can do. If we want people to seek help we must be open about the times it all comes crashing down, and that we don't actually have to be the popular version of strong ALL the time.

I've fallen apart many times in my life, not just in the last nine years of illness. Because I am human, not some super woman. I have strength. A strength which is true to me, even if others can't see it.

And for every single person who sends me emails, or is sitting at home right now reading this who feels like they are falling apart, or are afraid others will judge them if they voice their struggle, please know you aren't abnormal, you aren't doing illness wrong, you are stuck in a shitty and incredible hard and stressful situation right now and responding in a totally human way, but there is help available and there are others out here in the ether who get it and understand.

There is strength in giving voice to the struggle.

Screw the lie of giving up and falling apart.

You are not alone.

Michelle

It's okay to ask for help.

Here are some starter services in Australia. Most countries will have similar programs.

Australian Psychological Society (has a find a psychologist function)
Kids Helpline
Headspace
Lifeline
Beyond Blue
Suicide Line

This may be one of my favourite First Aid Kit lines:

I always thought you'd be here

But shit gets fucked up and people just disappear

In the case of chronic illness shit gets fucked up and life is hard. We don't have to pretend it's all sunshine and lollipops. 

Inequalities in medication access: Ondansetron. AKA If you want to not vomit be prepared to pay with your left kidney and first born.

(source)

It's the wave first. The rolling wave of warmth. The clench in my abdomen. Foul saliva that fills the mouth. It passes for a second and I think I'm okay. I take another bite. And it hits again. Harder than last time. And gone. Play the rookie and believe that it's over. Momentary. Fleeting.  Hope. Delusion. That lovely little fantasy land where nausea doesn't exist. Nor vomit rising in my throat. The sweat that doesn't come thanks to anhidrosis but my body still tells me is there. Phantom sweat? The limb equivalent in a body that just as stubborn as it's resident, likes to pretend it's still like all the other kids. Place a little minty wafer on the tongue. Feel it dissolve. Let the hope be absorbed into the oral mucosa....

....Sitting in the loo down the alley way next to the cafe. Focus on the hole in the scuffed plasterboard and the wad of old dusty newspaper used to fill it. Try to read the words in the creases. Wave on wave hits and I am forced to put my head between my legs. Raise my head and it hits again. Open up my bag grab another wafer in it's little foil pack. This time. This one....

....Sitting in the car in the carpark waiting for my youngest to get out of the university open day. Spitting out a frantic “I'm going to vomit!” as my eldest looks on helpless. I've done too much. I know it. I knew it in the cafe and the specialist's room before. On the drive down and in the shower before we even left home. But what can you do? Life doesn't stop because you're ill, because your body forgets how to hold food. Another wafer. A last gasp....

....Four's the limit for the day and here I am on number three already. A three hour car trip awaits while I weigh up taking another tiny wafer or simply stapling a puke bag to my face....

Nausea is debilitating.

It affects eating.

Sitting up.

Walking.

Talking.

Simply getting through the day.

I have tried home remedies. A plethora of options from the chemist. And many prescription medications.

It is a daily symptom. A combination of a malfunctioning digestive system and periodic blood pressure issues. Dehydration adds it's own joy to the mix and suddenly even the thought of food, or water, has me running for the loo or grabbing a puke bag.

Eating is now a chore. I feel sick before I eat, while I eat and after I eat. Vomit and I meet up on a regular basis.

I am losing weight. Far more than I should. I am unable to absorb my food properly so that the small amount I force in still doesn't give me all the nutrition or calories I require. Even when I can get it to stay down, I still fight to maintain a weight that wont budge from the underweight range.

I have dealt with this particular issue for 9 years now.

After much trial and error I have finally found a drug that can help. It takes the edge off and allows me to eat a little more and have a better chance of keeping it in.

Ondansetron.

I am not alone in loving this little wafer. For many in the Dysautonomia and Gastroparesis communities it is the only drug that even comes close to taking the edge off the nausea.

The only problem? Cost.

Ondansetron is subsidised on the Pharmaceutical Benefits Scheme (PBS) for the following:

Management of nausea and vomiting associated with radiotherapy being used to treat malignancy.

Management of nausea and vomiting associated with cytotoxic chemotherapy being used in the treatment of malignancy which occurs within 48 hours of chemotherapy administration (May be extended for up to 7 days.)

For patients with other conditions also undergoing chemotherapy there is no subsidy.

For those with unremitting nausea due to others conditions such as Gastroparesis or Dysautonomia there is no subsidy. Not even women experiencing Hyperemesis Gravidarum during pregnancy can access the subsidy.

This is what a 4mg $3 wafer of Ondansetron looks like.

(Green jelly bean for size comparison. Green jelly bean promptly eaten after photo taken.)

On a bad day up to 4 can be taken or $12 a day, or $84 a bad week.

My dietician suggested I take it before each of 6 small meals a day or $18 a day, or $126 a bad week. (Luckily, I can't stomach 6 small meals a day)

It can only be bought in 10 packs. Or 2 ½ days worth if you're in a bad patch. Unless you have a doctor who will give you 5 repeats on the script. Even then you can't stock up. One repeat at a time.

So patients put up with nausea and vomiting. Lose weight and end up malnourished. Relief and potential functioning is put aside thanks to financial constraints.

Loopholes and less legal means are employed by some desperate patients. I am ecstatic when I present at ED and as part of my overall stabilisation, a shot of Ondansetron is injected into my cannula. One less dose I have to pay for.

By comparison, in New Zealand fellow patients pay roughly $5 for 50 of the same drug at 4mg and roughly $6 for 50 0f the 8mg version, and some even less. It is also routinely prescribed in the US under the name Zofran, yet here we continue to struggle with access.

For most of us this is only one out of many prescription medications we take. The financial burden of management always at the forefront of our minds. (Between over the counter, supplements, and prescription medications I take 14 different medications. 11 every day. The other 3 are break through medications. Plus a medical grade food supplement drink when I cannot stomach solids at all.) Costs and symptom/illness management must be weighed up. Frequently, even for patients who are vomiting multiple times a day, the financial burden is too great. Leading to poor illness management and more frequent ED and hospital admissions. For a government who espouses a need to cut costs, a costly ED or hospital stay and increased disability and care needs, hardly equates to the best financial option when weighed across subsidising a medication like Ondansetron for patients who have unsuccessfully trialed multiple other antiemetics and antinauseants.

I, like many others, take Ondansetron sparingly. Quality of life is reduced. Ability to function is reduced. But the cost, which as it is not on the PBS other than the situations mentioned above, cannot count towards the PBS Safety Net. A double hit for patients already struggling. A subsidised script is also not covered by Health Care Card, for those on pensions. A small change to the access criteria would allow Australian residents to access a very effective medication option that our fellow patients access with comparative ease overseas.

With no cure in sight and treatment only in the form of symptom management and off label prescribing, this is a burden both financially and functionally, that patients should not have to bear. Ondansetron is not a drug for all patients and like all medications should only be prescribed based on individual need. But it is hard to understand why the exact same disabling symptom, nausea and vomiting that doesn't respond to other medical options, should only be subsidised if you meet two very specific criteria. I don't begrudge those who qualify a single mg, but I do want a word with the bureaucrats who make the decisions. I am tired, exhausted and malnourished. And my tolerance for health care bureaucracy and the taste of bile is waning at an accelerated rate. 

….So I lay down in the car for the trip home. I kept swallowing down the vomit and riding out the waves of heat and phantom sweat. Breathing through the worst of it. Willing my body to quiescence. A fourth wafer the bridge too far financially. Ride it out. Hold the puke bag. Prepare the family that we may have to stop suddenly. “Now” means NOW. Throw up on the side of the road. In the rancid loo at the petrol station where the doors don't lock and the floor is always wet, or the one where the lights don't work and plastic seats are met with a combination of hope and desperation. So familiar. Too familiar.

Michelle

*I have recently discovered that if your doctor writes a prescription for 30 wafers at a time it saves you a considerable amount ie it comes down to about $2 a wafer rather than $3. Equalling about a $30 saving overall, compared to the usual $30 for 10.

**Then if you have private insurance most will cover the gap in costs from the standard PBS price (around $37) which brings the price down to about $1. But like everything there is usually a limit to how much you can claim.

***Ondansetron is only one example of similar discrepancies in access to medications for the same symptom but different aetiology affecting Dysautonomia patients in Australia. For example, Octreotide is subsidised for 3 set criteria. Cost outside of those criteria is quoted as approximately $4,000 a month, making it effectively inaccessible. But the whole vomit/nausea mess is making access to Ondansetron very salient at present.

***8UPDATE: my local member has written to the Health Minister Susan Ley on my behalf. Will let you know when I hear more. Thank you to Darren Chester MP for taking the time to read my letter, this post and contacting the Health Minister. 

You might also want to check out:

The Price of Health
Pukefest 2011: The Most Craptastic Event of the Year.
Accessing IV Saline: A lesson in futility.
Six Months in Chronic Illness

Goyte's song Thanks for Your Time, about the ridiculousness of automated bureaucracy and phone cues just seems appropriate.

You have been placed in a queue

But your call is valuable

It's very valuable

We hope this doesn't inconvenience you

Because you're valuable

You're so very valuable!

Hear me.

A Facebook page I follow, recently asked those living with invisible disability:

"What's the one thing you wish people would say to you?"

It took me a long time to think of an answer. Admittedly, I have tipped over to the visible disability camp the last few years, but I still get the "but you don't look sick/disabled" comments with such frequency, that it would seem that I still fall into the not looking sick/disabled-enough camp. Go society and it's continued desire to hold on tightly to the myths and stereotypes around disability. But, I have spent enough years in the invisible camp, that it's legacy is still keenly felt.

A version of "I believe you," was sought by many. As was "What can I do to help?" I understand both of these. Belief was definitely lacking at the start, be it strangers, friends, family or medical practitioners. It was frustrating and disheartening and left me feeling alone. It also took a huge toll on my self-confidence as I internalised the lack of belief and started to doubt myself. Am I really sick? and Should I really just suck it up? were on repeat in my mind. And they were destructive. The current state of my body makes a mockery of those questions. Even at the start, passing out and a heart rate that wanted to go from bradycardia to tachycardia on a never ending loop wasn't exactly normal. Belief became my holy grail. It continues to be the holy grail for many. Sadly, even with concrete diagnosis belief can still be a missing factor. As such an expression of belief is understandably, high on the list of many.

A lack of help is another I understand only too well. As I wrote in No Casseroles for You, help is not often forthcoming for those with chronic illness, many of which are invisible. Often just like you can't see a chronic illness or disability, you cannot see its consequences. Alternately, it's chronic nature leads to care fatigue for those around us. When a disorder is measured in years or a lifetime, it is hard for many to maintain caring for that length of time. There are certain illnesses that are known as casserole illnesses. Those whose name inspire instant understanding of need and seriousness. That activate whole communities to action. And then there are those like Dysautonomia that are never, or rarely, invited to the party. Having said that, I know from friends who live with the well known casserole illnesses and, if they continue on over time, even they experience the effects of care fatigue. The inundation of initial help has an unmentioned but clearly defined shelf life. After which it dwindles away. If this happens for the well known disorders what does that mean for those of us who aren't even in the running? How I longed for someone to bring over a meal or offer to vacuum. Especially in the early days where I left work and was struggling to find medications that took the edge of my symptoms. But apart from two people, who have very generous hearts, it never eventuated. Outside of a couple of specific disorders, there were simply no services for seriously ill mum's in their 30s in my region. And living in an area with sparse general services, if family and friends didn't step up, you were left to fend for yourself.

I know all of this, but still I struggled with a response to the question.

When I sat and thought about my experiences, I realised that I don't want the people around me to say anything.

I want them to be silent.

Instead,

I want them to hear me. 

Really, hear me. 

In essence, both of the responses regarding belief and help are also about hearing. Hearing exactly what is going on. Hearing what my doctors have said. Hearing the expert knowledge I have about my life and disorder. Hearing about my needs. Not the needs you think I have. I still have vivid memories of the wall of milk that turned up on the doorstep of a family member after the loss of a loved one. Milk. We were trying to find places for milk for days. We froze it. Drank it until we were sick and threw out all we couldn't get through. I understand that people wanted to help. To do something. But 2,000 litres of milk was not a kindness. The community saw a need, but they didn't take the time to ask how that need might best be met. Even when other options were suggested, the tsunami of milk continued.

Hearing would alleviate so many problems. And part of truly hearing is active listening.

Active listening has a number of parts, but this is the one I really wish others would employ.

(University of Adelaide: Active Listening)

Illness comes with a whole host of judgments and assumptions. I should be better by now, I don't look sick or disabled enough, I just need to exercise, be more positive, I don't complain so I must be coping, I don't need help, it's not that serious, it's not like I have [insert illness of choice], if So-And-So can do it, so can you, ..... The judgements are automatic and fired off with relentless regularity. So much so they are parodied on many patient support sites.

They are so ingrained that many do not even realise that they are seeing you through that lens, or that their responses are influenced by those negative beliefs.

I don't want people to say anything in particular to me. I just want them to hear me. To actively listen when I speak. To understand that I am the expert in me and my needs. Being chronically ill is difficult, but so often it is not the illness or symptoms that end up being the hardest part to deal with. Instead it is often the reactions of others to our being ill.

I would add that we are not a homogeneous group. We do not all have the same experiences or needs. And our needs may be very different to what you would want in the same circumstances. When I hear fellow patients being told they are ungrateful for simply saying that they didn't need a particular form of help, or suggesting another way to help only to have it dismissed, it is clear that active listening has not taken place. That they have not been heard.

I know people mean well. I know they don't intend to make the lives of the invisibly ill or disabled harder. But as the old saying goes, the road to hell is paved with good intentions. Stop. Take a step back. Check your assumptions at the door. And listen.

Active listening is a skill. It is not instinctual for many, but it can be learnt. And that is a kindness to all.

Hear me.

That is the one thing I want from others.

Michelle

The Ramones, Learn to Listen, (1989)