“If I had a dollar for every minute I spent in a doctor’s waiting room then maybe I would be able to afford these outrageous medical fees.” - Myself.
Hello, and welcome to my blog. Now before we begin, in true Lemony Snicket style, I would like to advise you that the hospital life is not as intriguing as it may seem (despite what the sheer number of cancer movies may have led you to believe). In reality, it’s mostly filled with endless waiting, unanswered questions, and relentless pain (both emotional and physical). Let me assure that this does not make for an interesting story, but if you’re interested, or if you’re a spoonie yourself, read on.
Speaking honestly and openly about chronic illness is something that society does not allow, it defies the typical ‘sick role’ an individual usually plays in society. (I’m going to get technical for a minute so bear with me). In our society there is a concept called ‘Sick Role Theory’ that pervades Western Healthcare. This concept was coined by Talcott Parsons in 1951. ‘Sick Role Theory’ has two main rights and responsibilities being that an individual is exempt from normal social roles and is not responsible for their condition, and that the sick person should try to get well and must co-operate with medical care. This theory comes drastically unstuck when chronic illness (among other things) is thrown into the mix. When an individual’s illness is never going away, are they expected to play the ‘sick role’ their entire lives becoming an unproductive member of society? It sounds ridiculous right? But this is what happens. Individual’s with chronic illness are expected by society to fall into this 'sick role’ for healing to occur. However, as the time for acute healing passes and individuals remain in this state of chronic illness, they are held personally responsible for this failure.
We are a society that prides ourselves on productivity, we pride ourselves on showing strength through adversity, and we pride ourselves on personal success. But chronic illness has physically weakened my body; I am not always able to be productive, never ending displays of strength are exhausting, and sometimes I don’t succeed. This is not something to feel ashamed about, it is not something that should be ‘shoved under the rug’ so to speak. It should be spoken about, discussed, and normalised.
So if you get a thrill out of challenging societal norms, stick with this blog as I endeavour to make living life with chronic illness a public discussion.
My body is home to an invisible illness. If we were to meet
in passing you would see no visible sign of ill health on my body. To your eyes
I would appear healthy and strong, but on the inside my body is fighting a
never ending battle against itself. This is both a blessing and a curse.
In our society healthy is the normal and sickness is
something to be overcome so that one can return to this state of normality. When
you are unwell things are often taken from you; relationships wither, and
opportunities are lost (this is another story entirely and I will save it for
another day).
Since becoming sick I have spent my time striving to conform
to the healthy standard that society expects of us. Having an invisible illness
simplifies this task greatly. My exhaustion can be covered with concealer, a
shower goes a long way in washing off my sleepless nights, and a bubbly ‘hello’
can cover any pain I may be feeling. The only give-away is the pink scar that
lies across my neck. Maybe this wish to appear healthy is denial or maybe it’s
strategic, but either way it comes at a cost.
It turns out that appearing healthy isn’t all it’s cracked
up to be. When people can’t see your illness it’s hard for them to believe it’s
there at all. I can’t even express to
you how many times I’ve heard the phrase “but you don’t look sick” after
confiding in someone about my illness. This is a phrase that frustrates me
greatly. To many people who are chronically ill, it is a reminder of the
battles they have been through to prove their illness not only to friends and
family but also to medical professionals (yes, this invisibility can even fool
doctors).
This is not to say I wish to appear sick, I certainly don’t.
In fact, if anything I wish for good health. But just because my illness is
invisible it does not mean it isn’t there. People see only the times I am
expending energy but what remains unseen is the equal or greater amount of time
I spend recovering.
The façade of health is exhausting but if I were to let
myself feel the full extent of my illness I would never get out of bed. So I
smile and I laugh and I live my life because at the end of the day this is all
we have and I refuse to let it be taken from me.
Last night I lay curled in bed debating whether or
not I should go to the emergency room. My pain was excruciating. I couldn’t
stand. Breathing hurt. Yet still I couldn’t bring myself to face what I would
be put through if I were to seek treatment for my pain. This hesitation has been
shaped through years of experience as a female in the healthcare system.
In our society, a bias against women exists in the
treatment of pain. A woman’s pain is taken less seriously than that of a man’s
and it is much less likely for women’s complaints of pain to be acted upon
unless a biological cause of the pain is known. This has been my experience,
and the experience of many women I know, from a young age.
When I was thirteen I was taken to the emergency
room with excruciating lower right abdominal pain. The first question asked was
whether I had depression, the second was whether I was being abused, and the
third was whether or not there was a possibility of pregnancy. Despite me
insisting there was not and the fact I’d never so much as looked in the
direction of a boy I was given multiple pregnancy tests and an ultrasound just
in case I wasn’t telling the truth.
When this doctor examined me he took my hand and
tapped it telling me if only we had one of the boys I must be so popular with
to hold it that would get my blood flowing. He asked me to open my mouth wide
and when I did he remarked that I must get a lot of practice at this with the
boys. All the while my pain remained untreated. At thirteen I barely understood
what this meant but I knew how it made me feel and this became my expectation
of the healthcare I would receive.
This shouldn’t be the normal. Women should not be terrified
to seek treatment for their pain due to the risk of being dismissed. I refuse
to accept this as the standard of care given to women and while we may not be
able to change a medical system overnight we can start by giving this issue a
voice in society.
This week I have needed my friends more than I have in a long time and this week I tried countless times to reach out for help yet none of my attempts seemed to be heard. As any person with a chronic illness will know, the physical ailments cause a great strain on our mental well-being. Whilst being chronically ill requires a lot of physical help from my family, it is the mental support I need from my friends. After a particularly bad night I reached out to a friend. I sent a text saying that I needed help and that I thought I needed to start seeing someone. Their reply was to tell me I was being melodramatic, that I was fine, and that breakdowns happened to the best of us. My conversations with other friends ended in similar ways or simply ended with a failed promise to call for a chat. It was during these encounters that I began to think: maybe I had asked for help one to many times; maybe I had overreacted once before and this was my new reputation; maybe I was the girl who cried wolf. If I had used my quota of help from my friends where was I supposed to turn next? This concept of a ‘quota of help’ is something I find to be quite common in my experience of illness. Everyone wants to offer help because they care for you or feel it is the right thing to do. However upon completing one maybe two favours, their offer of help is revoked, they’ve played their part. My question to the chronically ill community is how do we let our loved ones know we are in need of their help without placing a burden on them? What is a fair level of help to expect? And what do we do in return to ensure our relationships remain strong and mutually beneficial?
