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)

Invisibility is a Multi-factorial Beast

[Image: a black and white still from the Invisible Woman (1940) Image of a midcentury bedroom an invisible woman is sitting on a round tartan covered footstool. All that is visible is the pair of thigh high stockings she is putting on.]

Interpretations of the 'invisible' aspect of Invisible Illness, are as varied as the people who live with the illnesses and disorders themselves. Dysautonomia falls into the invisible camp for the most part. Patients frequently report being told they look too well, or absurdly even that they are too pretty, to be sick. Not just from those in their lives, but sadly also by far too many medical practitioners. It often seems we are all part of some bizarre masquerade ball, wearing healthy masks, whilst our insides slowly fall apart. Whilst it is the aesthetic aspects of Invisible Illness that are often the most discussed, invisibility is really much more of a multi-factored beast. From common misperceptions of what sick looks like, to the way society and the organizations we create to deal with health and illness treat the ill, invisibility is a problem that needs to be addressed at multiple levels.

The aesthetic aspect is the most obvious feature of Invisible Illness. As I've written before I think this issue is two-fold. For many the lack of visible symptoms is problematic. Common perceptions of illness involve wheelchairs, hair loss, scars, bandages, and the like. Symptoms like tachycardia, weakness, nausea and pain aren't easy to spot. And yet their impact on functioning can be just as devastating. With regard to Dysautonomia, visible symptoms such as blood pooling are often covered by compression stockings. Or patients wear long pants to hide what is often thought of as an unattractive aspect of our presentation. Many, myself included, prefer to use what energy they have to try and look our best when we leave the home, even if that is just to see the doctor, thus hiding what few visible symptoms we have. At best a patient may look tired. But for the most part, others remain unaware of the continual internal symptoms with which they may be struggling.

This is further exacerbated by the simple fact that when most ill, and symptoms far more visible, Dysautonomia patients are usually not well enough to go out in public. And, not just at a social level. The common lament of being too ill to get to the doctor or hospital, means that for many patients even their primary doctor may never see them at their worst. It is often only those closest to a patient, their immediate family, who are present to see when symptoms are truly visible. This is further compounded for those who live alone or are isolated, who may never be seen when visibly ill, by the simple fact of their living situation. 

Then, and what I see as the more pressing issue of invisibility, is the lack of knowledge about the disorder. Dysautonomia, be it POTS, NCS/NMH, OI, or any of the many and varied subtypes is poorly known and little understood. Awareness campaigns are still in their infancy and neither the umbrella term, Dysautonomia, or any of the subtypes have made their way into the common lexicon. By comparison words such as 'cancer' convey a large amount of information in a short space of time, and you do not need specialist medical knowledge to understand the concept. As a community, we know that a cancer diagnosis is serious. From that single word we have instant basic ideas of risk, treatment options, difficulties a patient may face etc. This is not the case for Dysautonomia or any of the subtypes. Without direct knowledge of a diagnosed patient, very few have heard of the disorder. 

This lack of knowledge is not confined to the lay community. Even within the medical community it remains relatively unknown. Hence patients remain undiagnosed, untreated and often misdiagnosed. Many doctors may never (knowingly or unknowingly) seen a Dysautonomia patient in their career or may only have a single patient with the disorder. Additionally, many of the drugs used in treatment are orphan or specialist drugs, known only to those who specialise in the area. Even with doctors who have knowledge of Dysautonomia, many do not understand the impact these disorders have on day-to-day functioning and patients are often told that their diagnosis won't kill them, or is nothing to worry about. Leaving patients feeling both unheard and unseen.


Society does not encourage the free discussion of the less savoury side of illness. Illnesses that have a gastric component are a case in point. Many times these issues have a major impact on a patients ability to function, or even to leave their own home. Yet free discussion of these issues is strongly discouraged by societal norms. Many patients are living with issues such as daily faecal incontinence who have never discussed this with anyone in their lives. The sheer volume of patients living with this and other 'embarrassing' issues is not well known with many even too embarrassed to discuss them with their treating doctors. Yet as I have often found when discussing these issues on the blog, they are experienced at some level by many patients. Yet these problems remain essentially invisible due to societal taboos.

And then there is the simple fact that the sick in our society are frequently made to feel less. Especially with regard to chronic conditions. Most people can understand an acute illness. There is a very clear process involved. You get sick, you have treatment, you recover. A simple A to B to C. For those with chronic illness it's not that simple and as a society we have been taught to be ashamed of 'failing' to get better and many are essentially shunned. The implication being that they have not tried hard enough to be well and are therefore somehow to blame for their predicament. We apply a work ethic to health and fail to realise that work comes in many less obvious forms. Simply, getting out of bed and brushing my hair can be work some days. Being able to attend one school concert is an exercise in logistics and planning. Managing my medications and lifestyle modifications to maximise what I can do and maintain what little health I do have. But whilst important at a personal level, these exercises are not easily quantified or understood by traditional paradigms.

Our medical system, it's funding and treatment options then reflect this societal attitude. Yet another layer of invisibility to complicate the mix. Programs for complex and chronic conditions (especially those that are rarer) are limited and often expensive. Whilst, short-term rehabilitation programs exist for things like heart attacks and hip replacements, such options for disorders that require long-term rehabilitation are limited. Disorders such as Dysautonomia do benefit from long-term physical rehabilitation, but there is no quick fix and patients may need to come back year after year as their symptoms change (It is important to remember that there are subsets for whom such programs can be harmful). These programs are few and far between and quantifiable improvements and outcomes may not be as clear as they are for more acute illnesses. Often, particularly in remote locations and small communities, there is simply no place in the medical system for the complex, chronic patient. The lack of appropriate programs means patients aren't seen. And in our highly pressured medical systems, what isn't seen on a regular basis slips from the consciousness. As a result a whole community of complex, chronic patients exists out of sight, managing as best they can on their own. Invisibility in anyone's language.

How all these factors interact for the individual colours their perspective on what invisible means for them and for many all these factors contribute to patients feeling very alone and very invisible. 

As part of that community and having had those experiences I can empathise and understand the feelings of invisibility. But the reality is that these so called Invisible Illnesses, such as Dysautonomia, aren't actually invisible for those who live with them. At a personal level Dysautonomia is very visible in the way it impacts upon my life hence my post Dysautonomia: Invisible Illness my Arse! It is seen in my lack of participation in life. When I was unable to attend my child's sporting event or school play. When I am unable to simply go to a cafe for a coffee with a friend. When I am unable to stand to make dinner. When I am unable to brush my hair or lift my head from my pillow. Invisibility and visibility coexisting in one large, complex and chronic package.

Aesthetics are but a small part of the problem of Invisibility. It is how society treats the ill at the personal and organisational level. It is how our illnesses present and impact upon our lives and how we internalise our individual experiences, that defines Invisibility. Visibility and awareness and, in turn, improved patient experiences, will only be achieved by addressing all these factors.

What does Invisible mean for you? And what can we all do to enact change?

Michelle :)

Some other of my ramblings on the topic of invisibility can be found here and here.

I thought this was an appropriate musical accompaniment as we definitely need a better way of dealing with chronic and complex illnesses. 

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