My Name is Rachel. I am 28 and I
have multiple invisible illnesses: Ehlers-Danlos syndrome, mast cell activation
syndrome (MCAS), dysautonomia, postural tachycardia syndrome (POTS),
fibromyalgia, chronic fatigue, gastric dysmotility and more.
FINALLY
A HOLIDAY
After waiting for four years, I finally had health clearance from my
specialist to take a long awaited family holiday to Tenerife. I was so excited.
The day before we were set to travel, I had a substantial flare-up. My entire
body was filled with burning and pain. I was vomiting, dizzy and constantly
feeling light headed. My arms and legs were weakened from the pain, and I could
hardly hold myself up. On days like this, I rely on my mobility supports, in
addition to the support and understanding of my family.
When we arrived at Tenerife airport, I was approached by two security
guards who asked me to stand up and get out of my chair. When I told them I
couldn’t do that, they asked if it was because of my legs. This was based on
the assumption that because I am in a wheelchair it means I have no use of my
lower limbs. I tried to explain to them about my conditions and why it means I
rely on the wheelchair. The security officers either did not understand me, or
decided to ignore me, as they attempted to lift me from my chair.
Thankfully, my family intervened and spoke with the security officers and
explained the importance of me staying in my chair. The security officers
understood perfectly fine when spoken to by my father and husband; though they
had failed to let me explain before attempting, forcibly, to remove me from my
chair.
THE
JOURNEY HOME
Unfortunately, the journey home was not without issues either. In line
with the airline’s procedure, my family and I boarded the plane first – to
allow me the time and support to be seated before the rush of other passengers.
As we boarded, another passenger shouted “just because you are apparently
disabled, it means your whole family has to board early with you?” I burst into
tears. If only they knew that I pray every day to not be labelled and placed in
the ‘disabled’ passengers sections. Instead of freely walking onto an aircraft
with a bag full of duty free, I have a medical bag full of medicines and
equipment.
It is disgusting to be faced with verbal abuse and aggression simply
because I am in a wheelchair; facing daily judgement and torment from people
because I don’t ‘look’ sick.
THE DIFFICULTIES
OF INVISIBLE ILLNESSES
Having multiple invisible conditions is the hardest thing in
the world: the constant judgement, abuse, unkind behaviour and endless
challenges, on top of having to manage symptoms. The amount of times I have
been approached or stared down by people for parking in a disabled bay even
though I have a valid badge is shocking. When I am sat in my car I look like
any other 28 year old. Then I get out and I may have supports on my knees and
crutches. Only then when they see these obvious physical disabilities, do their
judgemental looks turn into looks of acceptance. Since when did we need public
acceptance to be ill? Why do we still have to put up with the stigma
surrounding the term ‘disabled’?
I am hopeful and positive, that one day the stigma will be lifted and
individuals with invisible illness will be free of judgement.
- I decided look into this article as it describes an issue to do with public transport that is there a method that I haven't looked into yet, flying. Interesting to see that the same discrimination people are facing every public transport there also facing when having something that is highly more organised and also should have implementation into ensuring a smooth journey for people with illnesses.
- People are facing the same discrimination they are in every other form of public transport which makes me realise there really is such a need for another awareness campaign.
- It is interesting to look into this story who it is written by the person is still a live blogger who still blogs about the issues to do with invisible illnesses that she faces every day. This is someone I will be trying to contact ask about her opinion about what she thinks can be done to improve the way in which people are perceiving invisible disabilities when it comes to getting about every day, and the issues she still may face.
Example blog post:
The biggest lie I have ever told. I keep it
hidden like hell burning silently strong where know one can see it. Would you
know it was there? Could you tell me you can see it if I asked you to point it
out? Can you pick me out from a crowd because of it?
NO.....
Of course you cant because no one can see it.
No one can see the battle my body is fighting every single moment of my waking
life. That's the hardest part about having an invisible illness, or like me
multiple illnesses.
You can see what I allow you to see. 95% of
the time I have enough energy to allow you to see the most perfect lie. The lie
that I am okay, well & not suffering. I allow you to see what you want to
see, what's more socially acceptable to see & I allow it because its easier
for you to see me well than me watch you uncomfortably force yourself to
attempt to sympathise with me if you saw otherwise.
The hardest thing for me is not living a lie,
attempting to control my own sense of normality or pretending my life is
different it is when people know I am suffering, they know, they can either see
it, they've heard it or been told it & still they push me to push my body
to do more than its capable of. Those kinds of people scare me because they
push the weak regardless & okay maybe its my own fault for accepting to be
pushed but wouldn't you if you thought for a moment it would make you feel as
capable as everyone else around you?
Lets do a tester here; and please do it
honestly. If you saw a person with a broken ankle in a cast using crutches -
would you ask that person to go upstairs to fetch something for you because you
where really busy
OR
would you go yourself to save that person the
experience of trauma, pain & emotion of doing it for you?
99.9% of you are more than likely to do the
kind thing & get off your backsides and go and fetch it yourself instead of
forcing the broken ankled individual to do it for you.
Lets go one more time; - If you saw a girl,
normal, no physical disability, no physical signs of being poorly BUT you knew
she was in agony, struggling & had not had a break for more than 6 hrs
would you send her to go and fetch something from upstairs because your too
busy to go and fetch it
OR
would you go yourself because you've weighed
up the pros and cons of sending her?
90% of you would ask her to go & fetch it
& your decision is based purely on physical appearances. You think to
yourself she's not disabled, she's not using crutches or a mobility aid,
there's nothing else physical that tells you she cant- therefore she's fine,
she can.
10% of you would probably consider asking her
but remembering she's in pain and would change your mind & find time to go
yourself. This 10% of people help to reduce the agony that girl is facing every
day of her life & little do you know that the efforts of this category of
people have reduced that girls flair up tomorrow by 10%.
The point I am making is that still, so many
people need a visual justification that someone's poorly or disabled or in
pain.
In the last 2 days i have been pushed, and
pushed and pushed - by people who know my struggle, who knows my body is self
destructing from the inside out BUT they still feel its okay to keep pushing
until breaking point.
Some of you are probably reading this &
saying "your allowing them to push you, you should fight back & put
your foot down and tell them where to stuff it" and yeah okay you are
probably right but it doesn't have to be this way.
Everyone has their own struggles and this post
it based purely on myself but I have worked endlessly to develop my career, my
life and achieve my goals & it has been three times as hard for me as I had
hoped because I battle with my body before some of you have even woken up, its
taken me twice as long to do something that takes you a moment & that's
okay because at the end of it I still ended up at the finish line where I set
my goal.
So why am I not getting the respect I deserve
for working my ass of just like you?! Why is it okay for you to push me when
you know how much I am struggling? Why are you allowed to do that? Why are you
choosing to ignore the signs & choosing to push me more and more for your
own benefit.
Like I said before.....
Simply because you cant see it.
You'll have got home from work, sat down to
relax & started tucking into a nice hot meal & attempting to unwind
while mentally patting yourself on the back for what you achieved today...
Me....
I get home & start the fight again, this
time with the pain. My body is burning in agony, I lay down & the pain like
electric shocks consumes my entire body, my bones, muscles and everything
in-between. I cry out in pain & attempt to get settled enough to try &
sleep. Its too late for a hot meal now, my body doesn't manage food like yours
so I have to choose my meal times wisely & this one is a sacrifice I've had
to make.
This is the reality of what happens when you
push the person who you know has an invisible illness, To you its just words
but to me its completely physical.
Invisible illness are real
They exist
and if you know someone who has one, STOP
& think before you ask them to do your job for you - because when they help
you, it will effect their life a hell of a lot more than it will yours.
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