Living with any chronic illness whether it be arthritis or Crohn's
disease we all think nearly the same and wish our family and friends knew about
how we feel. YES, we have feelings too just like you do.
1. We feel grief over the life we were living as we might have
lost.
After a life event of being diagnosed with a serious or chronic illness
the "life stress scales" appears. It is considered a grief
producing event just like any other major life losses like a relationship break
down or a death. Before I was diagnosed with Crohn's disease in April
2013 and Fibromyalgia in May 2017, I had no idea that people who were diagnosed
with ongoing health struggles were grieving just like when a loved one passes
away. After my diagnosis with Crohn's disease I had grieved for the
majority of a month. I had thought it would be the end of the world but
it was not but there are things I cannot do like I used to unless I am in
complete remission. With any chronic illness we grieve over not being
able to be productive as we once were as we lack energy and I myself also have
less motivation. We also lose friends as they do not know how to support
us properly or they themselves are scared of losing us to these horrible
illnesses; the loss of ability to do our favourite activities, I loved to be
able to sit all day doing crafty stuff but now I cannot sit and latch hook a
rug or do a cross stitched masterpiece; and the loss of independence as some
people are living with debilitating stages of the illnesses and have to rely on
careers or helpers to do things for them.
Grief comes in waves and can arrive unexpectedly. One moment we
are accepting all the changes in our lives then the next minute we are full of
sadness. The grief can be triggered by a simple interaction. It can
be similar to loosing someone you love, for example I went home for a day to
collect my daughter from her Nana's and everything has changed at my old house
since dad passed away and I had a massive wave of grieve overcome me. I
had to work extremely hard not to breakdown into floods of tears as I found out
in my counselling session that I have not accepted my dad's or granny's passing
yet. YES I know it has been over 2years since my dad and 1year since my granny
passed away. To be honest I have not had a time to accept their deaths as
Alisha was born 9days after dad passed away, my Crohn's flared up a few weeks
after she was born and my liver became inflamed so I had to come off all my
medication until it settled. After it settled I was battling my anxiety
and depression as well as financial issues so I had to go back to work again.
Then the March the year after my Granny fell ill and just 8days before Alisha
turned one my granny passed away. Unlike my dad I was able to say my
goodbyes and see her body before the funeral even though I could not face going
to the funeral with Alisha and letting her see me in floods of tears.
The grieving process with my illnesses on the other hand I am scared of losing
things again as I know it will be as intense as losing my only brother at 6yrs
old, losing my dad before his first grandchild was born and losing my last
grandparent who I was really close to as we had seen her like every week or
every fortnight since I could remember until I moved away to Manchester.
As odd as it may sound I am scared of admitting I am scared of losing
friends again because I want to have normal friends that are there to support
me as well as not normal friends who understand what I am going through.
Yes people come and go but after losing all my really good friends from
school and university as we all went our separate ways after we finished I am
just scared of losing my normal friends if my illnesses prevent me from doing
what I love the most when I am having good days and that is spending time with
them and Alisha and making the most in life. After seeing the way dad was
after his first stroke at the age of 8 (to be precise on my 8th birthday) and
the way it affected him I am scared of being dependent on someone to look after
me and to help me. Yes my bad days Alisha helps with some of the housework like
tidying the living room up and putting the dirty washing in the washing machine
but I feel bad even though she loves doing it and she always gives me hugs
afterwards as she knows it is helping me out and I always thank her for it
afterwards but I have always been independent from an early age wanting to do
things myself and paying for things myself.
2. We can feel like
we are letting you down even though you repeatedly say we are not.
I have a couple of
really close friends who I do try to see at least once or twice a month. They
all say it is ok if I am not feeling well enough to meet up with them and
should cancel. When that time comes I feel really bad on cancelling our plans
as I feel like I am a failure even though they say it is ok and my health comes
first. Yes I believe them when they say it is ok and not to feel bad but it is
not that I feel bad for not being a good friend always having to take each day
as it comes because of my illnesses.
This feeling of
letting loved ones down often results in constant apologising for being in
agony or being poorly even if it is not necessary to do so. I quite
frequently apologise to my friends, family and even my little girl for not
being able to stick to my word and taking part in activities even though I am
having a bad day with either my depression or Crohn's disease or the
Fibromyalgia even though most of them expect me not to overdo things and go
beyond my limits even though I keep pushing myself they do not want me to.
It is now a habit which makes me feel better to apologise to everyone for
letting them down. It is a way for trying to tell them that it is unfortunately
out of my control whether my body is going to be having a good or bad day and
with living with a number of chronic illnesses it is very unpredictable and if
it is one of my bad days it is not any fun for either of us.
3. It can be
embarrassing living with chronic illnesses
The main reason why
people are having a lot of embarrassment is due to them setting unrealistically
high targets and expectations for themselves and then they judge themselves
negatively when they cannot meet those standards. We really do not have
to look too far to see the unrealistic and high expectations and the negative
self-judgement. Yes I am one of many who set unrealistically high
expectations and targets for myself especially as a parent as I see I had a bad
childhood not the worst and definitely not a good one but that was down to many
reasons such as my dad having a heart attack and stroke during my childhood, my
only brother who I was close to passing away a few months after my sixth
birthday and being bullied throughout the majority of my school years because
of the way I looked, talked and because I was in the top 5 high performing
students in my year in high school. I set myself really high standards of
how I should be with Alisha and what she should and should be doing. YES!
I know children all perform differently but I am not on about developing as a
child and what she should be doing for her age. I am on about the way she
should be acting, how long she should be sleeping, etc. I have embarrassed
myself on a few occasions when I have had too much crap on my mind (pun not
intentional) and I did not realise she had been misbehaving with other family
members and also walking with her toes inwards every so often that she kept
tripping herself up when she was walking and running.
My family and most of
my friends have accepted my illnesses but I still keep finding myself being
embarrassed in front of them about things related to them such as my sore belly
due to cramping and wind or asking for help to do things as I have no energy to
do it like cleaning the house with me or playing with Alisha. I still get
embarrassed even though I have been suffering for years and many of them I had
met after I had been diagnosed with Crohn's disease but not many after my diagnosis
with Fibromyalgia. My family have never really understood me and some
never have come to terms with my diagnoses but I have a few really close
friends who understand me and I think they have accepted my illnesses too as
they are still here supporting me every day even though I have really bad days
but some of them can read me like a book and can tell when I am hiding behind
my smile. These are the friends that I would miss the most if they were
to disappear or walk out of my life as they have been the biggest support I
have since my dad and granny passed away. However, I do feel guilty when
I have to let them down because I am too sick to get out of bed. I feel
guilty when I have to break my commitments due to not feeling well. Even
though no one has said that they are annoyed with me for cancelling plans with
them I still feel guilty for letting them down.
Being ill can also be
embarrassing now more than ever as we all have to be fit and healthy including
mentally fit and healthy. There are things in my head that should stay
private but when I started my counselling sessions she said nothing is to stay
private so I could talk things through with someone which is why I always had
mental breakdowns as I always locked them things up and never talked to anyone
about things not even my closest friend or my family. I always have seen
it as they are for me to know and no one else as they can be very private.
We keep many details of our lives private why not chronic pain and
illness? Most of us unfortunately cannot hide our medical conditions from
everyone else as we have to explain to our loved ones why we cannot do this and
why we cannot do that, why we have to cancel plans at the very last minute, why
we have to sit down suddenly or leave a gathering early. Instead of
keeping it all private we have to talk about it and sometimes it can be
embarrassing or frustrating especially when they do not understand what all it
entails.
The most important
thing everyone cherishes is independence that comes with good health. We
find it embarrassing to have to continually ask loved ones to do so many things
for us such as cleaning, shopping and supporting us financially. There
are a few people I know who are forced to move back into their childhood homes
because they are unable to look after themselves or they can no longer afford
to live independently. Having to tell others that you have had to move
back into your parents’ house again can not only be embarrassing but
people can feel ashamed of having to admit they needed help from their
parents.
