“Life without sense of smell left me in a very dark place. Now I provide for others what was not available for me.” – Chrissi Kelly
We at BoxHuman are passionate about highlighting and celebrating inspiring humans; especially the ones who are inspiring, helping, and bringing light to the world. We do this to rebalance some of the negative messages we often hear, see, and receive daily. We met up with one of these amazing individuals…
Hi Chrissi, it’s great to meet you. Without further ado, let’s start this BoxHuman Inspire Series interview. Can you please tell me a little bit about you and what you’re especially known for?
I’m Chrissi Kelly, and I’m the founder of AbScent. We are a charity that helps people with smell disorders through the provision of support, education, and practical advice
A perfect intro Chrissi, thank you! Can you please tell us in your own words how your inspiring journey began, what happened and why?
In 2012, I lost my sense of smell after a sinus infection. I didn’t know such things happened, and waking up one day to have no sense of smell *whatsoever* came as a total shock. On that morning, I went into the bathroom and realised that my toothpaste had no smell at all. Then I tried to smell the hand wash, my shampoo, my face cream…everything was odourless.
My doctor said not to worry and that things would improve but that didn’t happen. I looked on the internet for information about smell loss and there was very little. What I did find didn’t seem very encouraging. A visit to an ENT didn’t provide much more information, and he also told me that if the course of steroids he gave me didn’t work, I’d just have to “get over it”.
Smell loss is something invisible, but equally the desolation and depression that can come with it is also invisible. We live with a condition that has a name no one knows (anosmia) and the effects of this can be hard to describe. We are isolated, living “separate” from the world, unable to participate in the most visceral and ancient of senses.
Most people assume that losing your sense of smell just means the minor annoyance of not being able to taste your food, but it goes much deeper than that. We use our sense of smell to interpret the world, to feel connected to our loved ones, the seasons, our emotions.
We use our sense of smell to self-soothe when we feel bad. Not to forget memories: we can all relate to that experience of being brought swiftly to a cherished memory by the smell of our grandmother’s kitchen or the floor polish of our first school. Smell, memory, and emotion are tightly linked in the brain. Smell loss means much more than not catching a whiff. Losing your sense of smell can change your life and your personality.
In 2014 I began to connect to the smell loss community. In 2015 I started a Facebook group and a simple website to provide the information I had dug up about my condition and a relatively new therapeutic technique called smell training. I sought out the author of the 2009 research paper in Germany and started attending courses at the University of Dresden in olfactory disorders. My intention in setting up the forum and website was to provide the kind of support that was not available to me when I needed it most.
In May of 2019, AbScent was granted registered status by the Charity Commission. Our website can be visited here: abscent.org
Wow, I didn’t realise that people can lose their sense of smell! Thank you for sharing that and for highlighting the importance of knowing that this condition exists. What has been your biggest challenge so far and how have you overcome it?
My greatest challenge has been that everything has had a steep learning curve! From managing my first website, learning how to make graphics that can tell the story, how to take photographs, use social media, learn the scientific background for the exciting research I am a part of now…all this has taken a tremendous amount of time.
How have I overcome it? I suppose I am so fascinated by how the sense of smell works, and the way my sense of smell has (partially) recovered, that it has never felt like a chore but rather an amazing adventure. I knew immediately that it was better to be a student of my affliction than a victim. I will never get tired of learning about olfaction–and equally, I will never tire of helping others who suffer as I have.
Can you please kindly tell us what you’ve learned from your own personal journey and what others should learn from it? And…You’ve heard a lot of other inspiring stories of people who have the same condition as you. Can you please tell me what inspiring story particularly stands out for you the most and why?
I have to start answering this question by saying that my personal journey started at a very dark place of despair and depression. Living without smell was like being locked in a dungeon with no light or air. But at some point, the fighter in me forced me to get up and use my energy and smarts to get me out of the emotional hole I was in. So I suppose I learned that I’m resilient and resourceful.
I remember hearing in the Facebook group a very touching story from a woman who had gone through chemotherapy for breast cancer treatment when she lost her sense of smell from a virus. Both her oncologist and ENT were “bemused” about her concern and distress over her smell loss, and a counsellor suggested her grief was “misdirected”. She said that while her breast could be reconstructed, her nose could not. This struck me as a poignant example of the gulf between patients with smell loss and their health care providers.
Thank you Chrissi, you have enlighted me and I’m sure many of the people who will be reading this. Just because you cannot see something does not mean that it doesn’t exist. You’ve also highlighted the importance of being understanding of other peoples’ journeys.
I am so inspired so I want to ‘dig’ a little further and ask…
1) What are you working on at the moment and why?
2) How can people get involved?
And… 3) What do you want people to learn from what you are doing?
There are three ways people can get involved with my projects and help others with smell loss. First, I’ve started an international research project with the University of Dresden (Germany) and the University of Tennessee (USA) where we are gathering information about people’s smell loss, and some other aspects of their lives with it. Anyone with a smell disorder can participate. The survey, terms, conditions and background info can be found at https://abscent.org/about-us/sense-smell-project
Second, I’ve developed a free smell training app called Snif to help people learn this therapeutic technique. Smell training can help people with post-viral smell loss. It can also be useful for some people who have had head-injury related smell loss but not always. To learn more about how smell training works, take a look here: https://abscent.org/learn-us/smell-training, and if you are interested in trying out the app, click here: https://abscent.org/members/snif-app
The third project I have going, and the one I am most proud of, is the Parosmia Project at the University of Reading. Parosmia is a phase of post-viral anosmia and can also affect people who have head injuries. It is the distortion of smells, and this distortion is almost always *awful*. Until now, parosmia has been a sort of footnote to smell disorders but this is changing. I had a chance meeting with Dr Jane K Parker of the Flavourcentre at the University of Reading in March 2019 and I shared not only my experiences with parosmia, but the comments of many in my Facebook community. As a chemist, this was a tantalising for Dr Parker. We are now four months into our research, with some promising results that we hope to have published by mid 2020. We have attracted international attention among olfactory scientists and ENTs. Anyone who would like more information about the Parosmia Project should contact me directly at [email protected]
What incredibly inspiring work that you are doing Chrissi! It’s so great to be able to highlight such an inspiring human like you. We’re nearly halfway through our time together. I think its the best time to start our BoxHuman Inspire questions before we say goodbye…
1) What makes you smile?
2) What do you do to empower yourself on a daily basis?
3) Who inspires you and why?
1. The smell of crushed leaves in my hand when I walk the dogs.
2. Exercise! Dancing!
3. Sharon Terry, founder of the Genetic Alliance, is my role model. I heard her TED talk on how and why she founded the Genetic Alliance. When I heard her say “we don’t have the answers, but together we have the answers in us” I knew that as a group, those with smell loss could forward their own cause, change the dialogue about olfactory disorders and be agents for change.
And…4) What is your favourite quote?
My favourite quote has to be…
“Experience is not what happens to you; it’s what you do with what happens to you.” Aldous Huxley
Brilliant words of wisdom and to keep the positive vibes flowing…If there was one positive thing you would say to someone to inspire and empower them what would it be and why?
With any chronic condition–and for many of us who have had smell loss, it will be a life long struggle–the most important thing is informed self-care. We are our own best care-givers. Learn about your condition. Keep up with the latest in the research. Be skeptical of quick-fix cures that you read about in unmoderated discussion groups. Find a doctor you trust, and then follow their advice. That’s how I would encourage someone struggling with smell loss to take control.
In a wider sense, I think I’d say that everyone has the potential to take control of their situation but it’s often so hard to start. When you feel you’ve been locked in the dungeon without light or air, it’s scary. How do you know where to start? You need hope, faith, and the will to keep putting one foot in front of another.
What future life goals do you still want to achieve and why?
I’m sixty and I should be retiring soon! I’ve set myself the following goals for AbScent that I want to achieve before retirement: get AbScent established and running so that is viable and has a solid future. Take the Sense of Smell Project and the Parosmia Project to fruition, and forward our understanding of smell disorders–and perhaps add something to what we know about olfactory receptors. I’ll keep talking to the hundreds of people who comment in the forum daily on their lives with smell problems. Every time I read a post about smell that describes an experience–despair, depression, joy–I want to connect with them. I have felt all those things, and like to think I’ve created a safe place for people to come and share their losses and little triumphs.
And in three words how would you describe yourself.
Resourceful, stubborn, positive 🙂
I’m Chrissi Kelly
The world needs more people like you, so thank you for shining your light for others! Finally and to conclude this interview…A BoxHuman is an empowered individual. They will not be defined by society’s labels. They show the better qualities of humankind, such as strength, kindness, and inspiration. Can you please tell us what makes you a BoxHuman?
My goal has been to provide for others what was not available to me in my hour of need. That’s the simplest way to describe my motivation. Fulfilling this goal has been a joyful experience. The best way to make yourself feel better when you feel desolate? Doing something for others.
“Thank you, Chrissi.”
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