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The Grieving Process

The Grieving Process
Usually when we think about grief we only think about the
loss of a loved one. We can also experience extreme grief in other situations,
including the one we face after being diagnosed with a vision impairment which
will ultimately send us legally blind. In fact, we are really grieving the loss
of our vision, our independence, our hopes and dreams for the future.
I hope my experience was unique, although I highly doubt it
was, but I truly felt abandoned at my time of diagnosis, like I was left in the
dark by health professionals and given no guidance, no encouragement and no
hope. As I have mentioned previously, I was told “you have a condition called
Stargardt’s Disease, there’s no treatment, so there’s not really any point in
us seeing you again unless you face problems in the future”. I walked out of
the ophthalmologist’s office feeling lost, confused and helpless. Being a
person who you could probably describe as a perfectionist, I had my whole life
planned, aspirations, goals, career paths, and it was all taken from me without
any real explanation. I began grieving the impending loss of my vision and all
that would follow.
A common model of grief (Kubler-Ross model) talks about five
stages of grief. When grieving, you can go through the stages and then revert
to a previous stage. The experience is different for each individual. Denial is
commonly the first stage. “I don’t have this condition I see fine” or “they
must have it wrong, we have no family history of eye disorders” were common
thoughts I had. I really think I spent the last two years in and out of denial
until I received the result of my genetic testing which finally confirmed that
I have the faulty gene.
Anger then follows, “why me” or “thanks mum and dad for
giving me rubbish genes”. The thought of “why me” went around and around in
circles in my head. I was also angry about the timing, just finishing my degree
and with my independent adult life ahead of me.
Another stage of bargaining also takes place. This made me
search for hours on end for alternative methods to halt the process, diets ,
supplements, miracle cures that were hiding somewhere. Although this is not
necessarily detrimental, if it gets to the point of being all consuming it can
be quite distressing.
Of course depression shows its head in the process. This
stage is probably the most likely to reappear. Just as you think you are coping
ok, bam, he’s back. I’ve allowed myself to have the days where I do get down
about the situation, as long as I promise myself I will get back up. It is ok
to feel sad, we are losing an integral sense, but we need to remember that
there’s a way through this.
Finally we meet acceptance. I don’t think I’m there yet. I
may tell myself and others around me that I have accepted my condition, but
deep within me I know I haven’t. It’s also hard to truly accept a degenerative
condition because just as you start feeling at ease with the situation, your
vision deteriorates and you feel as though you are back to square one.
All in all, it is absolutely normal and healthy to feel each
one of these emotions and different times. I highly recommend speaking to a
professional. I think it should be mandatory that when a person is diagnosed
with a vision impairment they are offered counselling and support. Also talking
to family and friends can help with the process, after all, it is likely they
are grieving with you and feel even more helpless than you do as they don’t
know how you feel or how to help. We should all remember that to feel this way
is normal and know that you are not alone.
Below are some helpful links.


  1. Chuck and Bea November 17, 2013 at 5:45 pm Reply

    hello my name is chuck have been leaglly blind since the age of 15 i will be 62 0n nov 20 -to me it is more of the pissed off period –some times the frustration is powerful -but it is my own fault –i try things that regular sighted folks would get frustrated doing –i get all my magnifer's out and swear like –heck —so i guess what i am saying no matter how frustrating somthing is –please don't stop trying –i don't know what your age is , if you stop trying your done ps my condition is stargardts

  2. njburnhamphoto November 20, 2013 at 3:41 am Reply

    Hey, I'd just like to say thanks for this post. It helped me to realize why I am still grieving.
    Also, I think it's cool that you posted this on November 16 since that is the day, six years ago, that I was diagnosed with Stargardt's.

  3. Mr Adil Kilwa December 4, 2013 at 11:20 pm Reply

    thank you

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  5. Chrissy Renee January 10, 2014 at 2:38 pm Reply

    Chuck thanks for sharing! I'm 27 and still all over the place with it but definitely will not give up!
    I think this post was important to share, nobody talks about the way such a disease affects you mentally and emotionally.

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