Anosmia

THIS BLOG IS ABOUT LIFE AS AN ANOSMIC - SOMEONE WITHOUT A SENSE OF SMELL. I AM A 22 YEAR OLD MA STUDENT IN LONDON AND HAVEN'T HAD A WHIFF OF ANYTHING IN ABOUT 15 YEARS. I AM WRITING THIS TO RAISE AWARENESS OF THIS INVISIBLE DISABILITY AND WILL UPDATE EVERY TIME THERE'S SOMETHING TO WRITE ABOUT.

Tuesday 25 February 2014

Sometimes a thing gets broke can't be fixed

I think I was a little bit wary about writing this post. I was worried that it would come across as too self-indulgent and miserable. But then I remembered that the point of this blog is to share my experiences of being anosmic. So that is exactly what I am going to do. What I would like you to do, for the purposes of this post, is to forget that you know me (if you do). I want you to think of me as just some stranger on the internet whose story you are reading. I don't want you to judge me or think that I'm trying to get sympathy from the people in my life. I just want you to understand what someone, anyone, feels like when they are told that they can never smell again.

Yesterday I had my final check in with Mr Philpott, just to see if maybe the surgery was taking a while to work. It was the same old smell tests, the same old endoscopy and what is now becoming the same old story of being told that there has been no improvement. If there was going to be any, it would have happened now. So that's pretty much it. During the first round of smell tests (think marker pens) there was possibly some improvement in sensation (the back of my nose tingled) but nothing so substantial as to give Mr Philpott much hope to my future. He suggested that it was probably not worth my while to see him again as he couldn't think of anything else that would help me. I thanked him for all of the time and effort he has given not to just to me, but to so many other anosmics in the country.

I know technologies may improve in the future and I know that I should think positive that at least I tried. But somehow that doesn't really make me feel any better. Fine, there might be better treatments in the future, but why should they work for me? Why should they work at all? It's taken us this long in the 21st century to even get this far. And trying to remain positive after my first set of smell tests after my surgery has only made this news that much more heartbreaking to hear. Don't tell me it's going to get better, because that isn't going to help. It might do if there was more than one doctor in the country working on it, but there isn't. This is the reality of the situation; I will never be able to smell.

It shouldn't make a difference, I know that. I've gone this far in my life without having a sense of smell, why should I be so upset that the rest of my life is going to be the same? I guess it's because last year has been such an emotional roller coaster. And there was that moment, that one brilliant shining moment, where I thought that maybe, just maybe, it would all be okay. Anyone who knows me knows that it is not in my nature to not try and find the best of a situation; I am a very positive person. But right now, I'm finding it really difficult. I think my mum described it best by saying that it's a grieving process. And I suppose really I am mourning for the things in my life that I have missed, will continue to miss and will never know to miss. A key part of my body does not work and it can't be fixed. It is not too dramatic to say that I am disabled, because in all actuality that is exactly what it is, no matter how over the top you think it is to say so. I would just like re-iterate the impact that being anosmic has on your memories, your relationships and your sense of taste. You can rubbish that all you like but it's been scientifically proven; if you would like further information on how it affects all of these things then please see previous blog posts. I bet you anything that if it was an impairment that could be seen, then there would be a lot more understanding and recognition of it. My nose has purely become an aesthetic. Fine, I can breathe through it, but I can also do that through my mouth just fine thanks and I don't miss out on anything doing so.

I honestly don't want any sympathy for this. I am sad, but more than anything I am angry and I am frustrated. I'm sorry if this post has come across as being negative and passive-aggressive, but I have had too many conversations lately with people who just don't get it. And I know that's not everyone and it's not even the majority, but it still makes my stomach get all knotted, especially when it's people close to me. That's why I wanted you to try and forget who wrote this. All I want is for people to understand what a huge deal this is for me (a stranger on the internet) and for so many others like me. That's all.

5 comments:

  1. Stewpot directed me here

    I've heard of this condition before and can't begin to imagine what it would be like to have total lack of smell [other than man flu... that's pretty intense stuff right there!!]

    Medical science has come along way and you never know, the future may provide some answers.

    "We must accept finite disappointment, but never lose infinite hope"
    Martin Luther King, Jr.

    Keep you chin up :)

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    1. You're welcome, my ex suffered with a chronic disease that she had multiple ops for and she also was given disappointing news which affected her for a long time. It was more physical for her (ileostomy) but like her it sounds like you have a lot of support around you which is key. Don't isolate yourself from it, embrace that there may be hope in the future. I'm pretty sure that name was alcohol related ha ha

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  2. Hi .my wife know a lot about the rare disease. The visible and invisible handicap. With or without name. With one with ten with more people affected by. Try to be world wide. Will ask her about you. But one thing you have to keep in mind Every thing can happen. Never give up. Sometimes its hard sometimes you can be furious against the terrible question "why".
    A Stew AAA Delta 2-1. Buddy

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  3. Hello Jesselyn,

    Stewart made me aware about your blog. I never knew the name for it, but i remember the father of a friend has the same.

    For people who don't have the same thing going on it is really hard to understand. I can't even imagine how it must be like, let alone "get it". People want to understand, want to cheer you up, want to sympathize, cause they are your friends and feel like/want to be there for you.

    I wish you all the luck in the world and hopefully one day you can give it a place. It might take a few years but hopefully you can find peace with it someday. I been trough such a experience as well. Having something that only a few people world wide had with no solution. I will spare you the whole story. For me i took quiet a few years before i had peace with it. But it happened, so i really hope you can find that as well some day.

    Take care!

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  4. Well thank you for sharing a piece of your world with us. There is always a blessing to be had and your condition may be apart of blessing other's lives. Stewart talks highly of the discussions and time you've invested in your friendship, so I would imagine good thing come to good people and you'll reap the rewards of your compassion! From flyover country in the US Midwest, we're praying for you to have understanding during these trials!

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