Articles, Blog

Invisible Illness Awareness

February 10, 2020


I’m Gemma and I am the senior
HR adviser and quality control coordinator here at the Digital
Accessibility center. I have multiple sclerosis. I have relapsing
remitting multiple sclerosis which is
an invisible illness. It’s not something
that you can see but it is equally
as debilitating as A condition that
is plainly visible. For example somebody
who is in a wheelchair or somebody who is blind it can
impact on your ability to walk. It can impact on your ability
to see, to comprehend. It can leave you so tired that
you’re unable to do anything but because externally you
look absolutely fine, it’s something that
is not often considered. In terms of the way
multiple sclerosis can affect people’s day
to day lives. For example getting online
and online you can sometimes suffer
with sensory overload if a website is very very busy
or it’s got a lot of detail or if it’s overly wordy. If you are having a relapse
or even a flare day sometimes it’s very difficult
to take that information in so sometimes you find
using these things to be a little bit too overwhelming
in terms of physical aspect. Sometimes it is too difficult
to manage buildings that have
stairs sometimes you can forget
where things are or you can trip because people have left things
in places or even because your body
has decided to stop working when there is no obstacle.
So in terms of the way that my condition can affect me. In ways that perhaps
people might not think. To take into account
it’s quite often because it is an invisible
illness on the outside. People will often say
but you look so well. The reality is,
and I’ve always said to them, if you turned me inside out. The truth of it would be
very different it would look very very
different. I do find that sometimes people
are perhaps a little bit over the top
in terms of the way that they interact with me and sometimes I’ve had cause
to complain that people maybe sometimes treat me
like I’m made of porcelain and the reality is I’m not. You know when I’m not having a
flare day my body mostly
functions and that’s fine.
When I’m having a flare day and my body isn’t functioning.
Often. I’ve had to say to people
it’s very kind of you to sort of speak on my behalf
or decide that something is not for me because I might
not be up to it. But the reality is, is
you don’t become invisible because you have
an invisible illness. You still have a voice
you still have an opinion and the way that you want
to things is, I find is often very much forgotten
because they assume that because you have this affliction that you are incapable
of making that decision. And the truth of it is even
though you have an invisible
illness you are still a visible person with very real thoughts
and feelings. And very real opinions and ideas
on how you want to do things and quite often we are
all very capable of saying when something is beyond
our capability. So whilst it’s lovely that
people sometimes feel the need to speak on your behalf. The reality is most of the time
it really isn’t necessary. So a Flair day, the definition
of a flare day can vary from person to person
so one person for example say my MS nurse, might call a
flare day an exacerbation of
symptoms where as my consultant
neurologist may call a flare day an actual relapse and they are two
very different things. A relapse is a new occurrence or symptoms
or a new episode of disability or disabling effects
whereas a flare day is regarded by my MS nurse is an exacerbation
of existing symptoms. So in my case it might be
that my leg becomes weak and I have to rely on a crutch
or that I lose the vision in my
left eye. The defining criteria
is that it actually comes back. So a relapse is something that
happens and stays and a flare
day is something that happens
but then it resolves. So if I’m having a flare day
you may well expect to not find me being able
to do very much all whereas conversely the next day I might
be fine. Best way to describe it really is a bit like
a frayed USB cable. One day it will
transmit the signal no problem the
next day not so much. So I guess the thing
with an invisible illness is people very often, like
with a visible illness, they don’t really know where
the boundary exists in terms of when you should offer help and when you should refrain
from offering help. I think. Really the litmus
is that actually you should, most people will tell you
if they need help and that that Bachan
sort of the gauge. I know that if I need help
I’m the first person say if I don’t say generally
speaking people who know me know not to offer help
because it won’t be. There’s a fine line between
being helpful and insulting. And that’s very honest
take on it, is not very popular but it is very honest. But then I’m the same
if I see somebody struggling, my immediate response
is to offer help. So I suppose from
a human perspective it’s hard coded into our DNA. So where it’s working out
where to gauge it I think the only way
you can really do that is if somebody has asked
for help you should give it, but otherwise wait to be asked.

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