“Nope,” I calmly respond. We have been here before,
my thoughts and I; I know how to respond and make these feelings go away.
“Yes, you are,” says the voice, a little stronger,
growing louder.
“Never. Not me. I’m always alone; I’m used to it.”
My words are calm and collected, but a hint of panic is growing inside me. Yes,
I am almost always alone, but am I really used to it? The voice has planted a
seed of doubt within me.
“Just admit it. You miss your friends. You miss
school. You miss the ability to go out and meet people whenever you like. Now
you sit at home all day, confined to your room, missing out while everyone else
gets on with their lives.” The voice is persistent today.
“None of that matters,” I yell, shocked how loud my
words are, how I no longer feel calm and collected. “I have a whole room full
of beautiful things to keep me busy: books, puzzles, colouring projects, music.
I don’t need anything else. I am happy on my own.”
“No, you’re not,” hollers the voice. “You’re lying
to yourself. Lying, lying, lying!”
“I am not!” I scream back, louder than ever before,
no longer in control. “I’m perfectly fine on my own.” I am desperately trying to
convince myself and to drown out that little voice, but I know that I’m not
fine. The voice is right, I am lying. All the nice things in the world couldn’t
make up for the isolation I feel.
“You are lonely,” repeats the voice, coolly, matter
of fact, knowing that it is winning today. It knows that the last months spent
alone have worn me down, and the coming months will make it worse.
“No, I’m not…” I quietly say with a tremor in my
voice. I want to believe I am okay on my own, that I don’t need other people in
my life to feel fulfilled and happy and that I can keep myself company. But
none of that is true. At the end of the day, we all need friends and contact
with other people. So I give in and think, “Yes. Yes, I am lonely.”
A chronic medical condition not only affects a
person’s health, but also has far reaching consequences regarding that person’s
personal and social life. While people may be aware of the physical effects a
chronic illness may have on a person, they are often unaware of the isolation
and loneliness a person may experience as a result of that condition.
It is amazing how quickly my friends forgot about me
once I went on leave from school and moved back home in order to fight the
chronic bone infection that had re-established itself so sneakily and was wreaking
havoc on my health. People didn’t want to know the details of my diagnosis;
they got sick of hearing how I was actually feeling because it was always the
same “I am exhausted and feel horrible” so they stopped asking; no one came to
visit in the hospital; there were no get well soon cards; no phone calls or
emails with encouraging word or offers to help out if needed; no one came to
visit me at home after surgery; people stopped responding to my text messages.
It was as if I didn’t exist anymore. I had simply vanished. No, more than
vanished. It was like I had never been there to begin with.
I am sitting here now, thinking “God, I still have
months and months of treatment and uncertainty to go. How will I ever get through
it alone? I am so lonely”. I am extremely fortunate that I was able to move
back home with my mum for the duration of this medical saga and that my mum and
I get along really well. I could not get through this without her kindness and
support. At the end of the day, however, everyone needs friends, especially ones
their own age, the ability to get out of the house on their own, to socialise
and meet new people. As I have discovered over the years, these are all things
that become challenging or even impossible given a chronic medical condition.
So I am not only lonely because my friends forgot
about me but also because of my own physical inability to get out of the house (or
actually go places if I manage to make it down the stairs and out the front
door). Sometimes something as simple as leaving home and being out in a crowd
or people watching is enough to ease
a sense of loneliness and isolation.
As I sit typing here, two months from the previous
surgery and a mere fourteen days before the next one, I can’t help but think of
the other ways that a chronic medical condition can cause a person to feel
lonely. What comes to mind is the lack of understanding and empathy that many
people seem to have. Today, for example, my mum went to a meeting. While there,
people asked her how I was doing. In particular, one person asked her where I was
living at this time. She was shocked when my mum said I was living at home because
I am unable to work or attend school given the circumstances. She responded as
if I was somehow failing as an adult for being a twenty-three year old who had
to move back home. Forget that this twenty-three year old can’t even walk and
will be getting a metal frame screwed through her leg like a giant Meccano set
to regrow her shin bone, she should be able to support herself and be
independent no matter what! Despite what my mum has told other people about my
health, people are clueless. They hear the words “missing 2.5 inches of bone”
and say ohhh and ahhh in response, but they don’t bother to think what that actually
means. Unlike a sprained ankle or broken leg, there is no script or social
convention about missing tibias for people to follow. And because people don’t bother
to think what it actually means to lose the ability to stand on their own two
legs, they don’t have any empathy or compassion, no kindness to spare. As a
result, I feel alone. It feels like no one else knows what I am going through.
There is no one else to relate too, only a sea of glowering, disapproving faces.
That sea of glowering faces brings me to my final
point – chronic medical conditions affect my ability to contribute to society
and to do the things society tells me that I should be doing given my age and
previous accomplishments. Consequently, misgivings about my self-worth and usefulness
have arisen. I find myself looking in at the world thinking “I should be part
of that, but I am not… what it wrong with me? How can I be worth something if I
can’t be part of it?” Many young adults already struggle with these feelings
given the realities of the job market and the problems facing the world. There
are so many questions – is getting an undergraduate degree worthwhile or should
I go to college instead? Will completing a master’s degree increase my job
prospects or is it an unnecessary financial strain? How can I justify accepting
any job that comes my way regardless of my education? Is now a good time to
have children or buy a house? How can I justify this expense given my minimum
wage job? Is it acceptable to indulge a little given all the problems and
poverty in the world? Etc. – that young people think about when they consider
their prospects and their self-worth. These questions are amplified when one is
unable to take part in what is socially expected – volunteer work, jobs, school,
socialising, marriage, raising children. It makes sense that people with
chronic conditions feel lonely as life passes by without them. It also makes
sense that they feel lonely and isolated when they think of all the ways they
cannot take part despite the desire to do so and then consider their self-worth
in lieu of sitting on the side lines.
The world keeps moving as I sit watching from the
window. Occasionally someone might peer in for a moment or two, but at the end
of the day, I am shut inside alone while the people on the pavement can mingle
as they choose. Almost a decade’s worth of bone infection followed up by losing
a chunk of my shin bone have more than familiarized myself with the world of
loneliness and isolation.
To sum up this blog post, even if people are unaware
of it, chronic medical conditions often result in more than physical symptoms or
a few weeks or months off from work. The reality is that they cause isolation
and loneliness in a number of ways:
• When people are diagnosed with chronic conditions,
they are often forgotten or overlooked (even if unintentionally) by the people
around them, which results in loneliness.
• People who struggle with chronic conditions, pain,
or physical immobility often become isolated because they are physically incapable
of leaving the house alone to mingle with the rest of the community. Something
as simple as showering or making it down the stairs may be such a hassle or
strain on energy that it is hard for people to justify getting out of the house
for a few hours. As a result, people miss out on parties, social engagements,
trips, a cup of coffee down the street at a café, and any other socializing that
occurs outside the home.
• A lack of compassion, understating, and empathy
make it difficult for people with chronic conditions to have meaningful interacting
with others. Without understanding there can be no empathy and without empathy
there is not drive to understand. Without either, the world is full of a lot of
judgement and know-it-alls ready to meddle and tell you why you are dealing with
your health in the wrong way or how you could have prevented your condition if
you had only done something differently. The world is a lonely place without
kindness and support.
• Being unable to partake in activities or too
achieve milestones like those around you are doing makes it easy for people to
feel like they are not part of the society. Nothing says isolation like
watching your former friends who have forgotten you since your diagnosis
because they lacked empathy and understanding buy a house, get married, and
have children while you question your self-worth as your struggle with the apparently
not so simple task of getting out of bed. When you feel worthless, it is easy
to justify staying inside or ignoring what few phone calls or visitors you get,
therefore perpetuating the cycle of loneliness even further.
So loneliness and isolation play a tremendous part
in the life of someone with a chronic medical condition. I am struggling with
that isolation and loneliness right now. I miss having my classmates, being independent,
the ability to pop down to the store to buy a loaf of bread, bumping into a friend
in the process. I miss feeling like I am getting somewhere in life, completing
my college education, writing my certification exam, becoming a nurse. I feel
like I am outside of things. Life is moving on without me. Loneliness and
isolation are more than just feelings; they are things I am experiencing right
now.
The take away, like that of several of my other
posts has been, is kindness. Be kind and compassionate, have empathy and try to
understand what other people are going through. A moment of kindness on your
part by picking up the phone, writing an email, popping by for a cup of tea and
scones, can be the small thing it takes to ease someone’s loneliness. Chronic
medical conditions are, unquestioningly, the cause of loneliness (it is inevitable
that such an experience won’t have an influence) b that is not all they have to
cause. They can also cause moments of great warmth and true friendship.
P.S. I am fortunate to have two friends who do keep in contact with me, one from way back when in high school and another from university. Their company and contact is invaluable and make difficult days a little bit brighter.
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