Anosmia and Me… How many people actually know about anosmia?

As many of you are aware I became anosmic due to a very bad dose of flu 10 years ago. I had no idea this would result in me becoming anosmic and it took me weeks to realise that my ‘proper’ sense of taste would not come back because I couldn’t smell anything. Some food had no taste at all and some foods I would have picked as a favourite ingredient to add to any meal now tasted disgusting.  

This was probably my parosmia stage and I know I lost weight because eating was no longer enjoyable. After this stage began to pass I tried to force myself to eat and the opposite happened I put on weight! I felt I had to eat even though I never felt hungry and I very rarely do even now but I had decided I had to eat to get ‘better’. 

So few people seemed to have even heard of the word anosmia let alone knew what it meant all those years ago. The only positive result of Covid, if there could ever be one, is that losing your sense of smell and taste due to being ill from a virus is now known about by  more people. However, I am still not convinced that anyone who hasn’t experienced smell loss can fully understand the impact it has on your day to day life. That was one of the reasons I set up my Twitter page 2 years ago to try to offer sympathy and an understanding of how tough it can be to new anosmics who have Long Covid. At first I tried to explain how I had learnt to cope with it when it first happened to me. I was amazed at how many people responded from all over the world and not just new anosmics.  

I admit that I didn’t know that people could be born without a sense of smell until I started my own research into anosmia.I have been in touch through Twitter with so many fellow anosmics including Congenital Anosmics. All these tweets have helped me to have a greater understanding of how we all live with a lack of taste and smell and I still tweet because I want to do everything I can to ensure more people know about anosmia.  

I volunteer for 2 different organisations on a regular basis. One is at a charity shop and all my fellow volunteers are now fully up to date with what anosmia is! I am glad I explained about my anosmia as it has been very helpful for one of the team who temporarily lost her sense of smell after contracting Covid. She felt she could ask me anything as I would understand. She said she felt less alone because she could talk about it with someone who knew what it was like. 

The other organisation I volunteer for is for our local National Park where our role is to help visitors, especially ones new to the area, get the most out of their visit. I’m lucky all these duties are outside in the glorious countryside. 

I don’t always volunteer with the same people, you just join on the online diary. Recently I worked with a volunteer I hadn’t met before. We got chatting as we walked the path and half way through our shift we both agreed to have a break at a local community run café. I, as usual, took a while to choose what to eat. Is the texture good for me? What might I get from the taste? Etc,etc.  

Once we had been served she asked me if they hadn’t got anything I liked or was it because I was gluten intolerant or maybe vegan as it had taken me so long to decide. I explained to her that I was anosmic. She had never heard of this before it being mentioned as a symptom of Covid and that it was a temporary thing. This led onto me explaining how long I had been anosmic and then as we chatted I told her about other ways people became or were anosmic. It was Congenital Anosmia that really caught her attention.  

It turned out that her son had never had a sense of smell. When he was little he used to ask her if it would ‘grow’ like he did. She had no idea it was a known about condition. His inability to smell or taste properly had never bothered them or him. They had just accepted that was the way he was. She was delighted she could finally explain to him, even though he was now grownup, that he had been born with Congenital Anosmia. No GP or other medical professionals had ever explained it to them. I said I wasn’t surprised to hear that.  

This made me think, if so many in the medical profession still have little or no experience of or understanding of anosmia how can we expect the general public to know about it? Does this mean that I will have to continue my tweets to try to get the information and understanding out to more people, I think it does !