My World of Anosmia

I am excited to introduce Debbie Jinks this week to share her lived experience about a rare condition called anosmia. I hope you enjoy her interview as much as I did!

Hi, I’m Debbie, and I have a little known condition called Anosmia, which means that I have no sense of smell. I also have no sense of taste, as they are both connected. So in most cases if you don’t have smell, you don’t have taste either.

Hi Debbie, thank you for sharing your experience with us today! Can you give us a little background as to how you developed anosmia?

My Anosmia was caused by a head injury just over a year ago. I passed out and hit the back of my head very hard against a wall and when I came round, that was it - no smell, no taste. The Ear Nose and Throat specialist seemed to think that the impact caused my brain to move around in my skull, severing the tiny fibres attached to my olfactory nerves and eradicating my sense of smell. The fact that there is no cure, that all I'm told by doctors, consultants, professionals, is that it might come back in time or never, as the case may be, seems a bit hit and miss to me. Almost as if all of these people have run out of ideas or didn't have any in the first place. "It's not that common," I'm told, "there's no money to do research- it isn't life threatening", and "there are more pressing/urgent illnesses that people are going through, so this can't take priority." I understand all of this, I really do, but to me this is a big deal. Ok not life threatening, but life changing.

 

Definitely life-changing. I am sorry too when I think about how non-life-threatening conditions don’t get as much attention and research as the life-threatening ones. Can you tell us about what life is like living with anosmia?

I never give up hope that I might get better as it can happen sometimes, but in the meantime, I know that I still have to get on with my life. At first I was a mess, very depressed and unhappy. Food was boring and not worth the effort of eating when I couldn’t taste it, so I lost a lot of weight. I also missed so many different smells - everyday smells people wouldn’t even think about, like cut grass, perfume, food cooking - all those simple things that we take for granted.

I still have my bad days, but one of the things that helped me was to write it all down, get it out of my head, and into words so that I could look at it with another person’s eyes almost. It was painful but also helped me alleviate all those pent up feelings of frustration and anger.

Now when I eat, I have to focus on other things instead of taste, like texture, colour, and how the food looks in general. This doesn’t replace taste of course but it has made food a bit more interesting and does help. I am also in some Anosmic groups on Facebook which has helped me realize that I’m not alone, and I’ve found that giving guidance and comfort to other people is very rewarding for me and has made me stop being so self-obsessed, and instead try and help other sufferers also.

 

Are there certain colors or textures that you like more than others?

The textures I like most are the ones that have a nutty, seedy quality to them, not as in taste but lots of different sensations in the mouth. It makes the food more interesting if it’s a bit chewy for example. I also like thick sauces as they have more substance to them. As for colours, nothing really springs to mind. I suppose colours that stand out more such as red/orange colours in sauces. In relation to my loss of smell I love flowers and outdoors so pale blues, fuchsia, pinks, purples, greens are good.

 

And do you have zero sense of taste or is it dulled?

At first no sense of taste at all, then about two months in I began to get vague indistinctive tastes of strong flavored food that I wouldn’t be able to identify if I couldn’t see it, not always pleasant tastes either.

 

Have you come across any potentially dangerous situations related to anosmia (i.e. eating/drinking expired food items, not smelling smoke, etc.) and how do you make sure none of that happens?

I would be lost without my wonderful husband on this one. He will taste test and smell anything I’m unsure of and if he’s not there and I can’t tell, then I’ll wait till he’s back. He also tends to do the majority of the cooking as I can’t gauge how many spices, herbs etc. to put in so it could end up tasting terrible otherwise, if I follow a tried and tested recipe I’m ok though.

I forgot to turn the gas off on the cooker hob once and luckily my husband was there so he smelt it and turned it off, it was a bit scary though so I’m really careful now. I worry about hygiene quite a lot, even though my routine for showering, washing etc. hasn’t changed its made me quite paranoid as to if I smell ok, or my clothes, towels etc. smell ok.

 

Can anosmia be treated?

Anosmia is something I have been researching a lot lately and I have found out about something called ‘Smell Training’. Even the people who teach it aren’t quite sure how it works but basically, researchers have found that ‘similar areas of the brain are stimulated when both detecting and imagining particular scents’ (http://www.fifthsense.org.uk/smell-training/). This being the case if a person can imagine a certain smell from their memory, for example a rose, when they attempt to smell it, it’s possible that eventually by imagining the smell they will start smelling it properly. In the case of smell training, strong scented essential oils are used, the recommended ones being rose, eucalyptus, lemon and clove, and a patient will smell them daily for several months, in the hope of retraining the brain to remember how they smell and eventually be able to smell them again. It’s not guaranteed of course but ‘in clinical studies, evidence suggests that patients who did this fared better in identification and discrimination of smells that those who didn’t’, so for me it’s worth a try! I have sourced this information from the ‘Fifth Sense’ website (http://www.fifthsense.org.uk/), which is a website dedicated to supporting and researching Anosmia, and is a brilliant resource for Anosmics, and people who want to learn more about it.

I am going to be taking part in some smell training next week with a trainer called Chris Kelly, who used to be part of the ‘Fifth Sense’ website, and I’m really hoping it’ll help me.

Smell Training with Chris Kelly, smelltraining.co.uk

Smell Training with Chris Kelly, smelltraining.co.uk

 

You mentioned paying attention to the different visual and physical qualities of food and writing as coping methods. Are there any other ones you would like to share about?

I am actually a singer/songwriter, and I did this as a career for about 5 years. And after the accident, I turned to this as another coping method. Recently, I’ve picked up teaching also. I am currently setting up a website as an online resource to help people learn how to sing and write lyrics. I will also be offering my services as a songwriter to people who want lyrics written for them. This has definitely helped me to cope during the tough days, and I think it would be very therapeutic for others as well. Please keep an eye out for this on my blog, which is linked in my bio below!

 

Do you have any advice for others who are also living with anosmia?

What I will say to people with this condition is never give up. It’s easy to get complacent about something like this and stop trying, but there is always a chance that things might come back. If you don’t give it this chance then you’ll never know. Try everything, be open minded, push everyone, talk to everyone, and keep going.

Thanks Jessica for inviting me to guest post, I hope everybody’s enjoyed reading it.

 

Author Bio: Debbie Jinks – Determined, strong (now), and feisty!

I used to let my Anosmia define me when it first happened, as it was the sum of me at the time, and all I could think about. I’ve moved forward since then, so the real me goes like this…….I am a singer, songwriter and did this as a career for about 5 years, then I became a singing teacher also. This was a successful career which I enjoyed at the time but then I was offered a job as an Area Manager for a wildlife habitat I used to volunteer for. A bit random I know but I’m a real outdoor girl so it’s an ideal job for me which I am very happy in. I still sing as a hobby, that’ll always be part of me.

My blog has helped me discover that I love writing and I hope to take this further at some point, and in a way I have always done it but in a different format previously, as a songwriter. In the meantime, if you’d like to read my blog the link is icantsmellathing.blogspot.com.