June 08, 2020
Many of you are having feelings of anguish and despair about your smell loss as well as parosmia. Wherever you are right now in your post-COVID19 experience, I wanted to say a few words about my own experience of recovery as a patient, as well as a patient advocate. I have read thousands of stories here on FB over the years, and spoken individually to many hundreds of you. I'd like to share what I can in the hope that it will help you.
Some background: I lost my sense of smell after having sinusitis in 2012. My smell loss was total. So was my emotional nose dive. I experienced 3 months of complete nothingness with my sense of smell, although I always had true taste --salty, sweet, sour, bitter and umami. Shortly thereafter I had a period of phantosmia, followed by vague smells that I could not name. These quickly turned into parosmia, which lasted for two years and included many of the things you've described: weight loss, inability to cook, go to the grocery store, sit at a table with people who were eating. My sense of smell started to feel "real" to me 21 months after my sense of smell disappeared. I still have some distortions, although they do not trouble me, and I still notice improvements 8 years in. I started my exploration of smell training nine months after onset.
Smell loss was a bereavement, like the death of a dearly loved person or the loss of a limb. My sense of self was gone. Within about four months I felt unable to continue living. Everyone was worried about me. I didn't recognise myself. My personality felt changed. In these eight years, I have never found the way to adequately describe the pain living in a world without smell. Thinking about that dark time, and sometimes reading your stories, brings me to tears. So here are some observations about myself, and hundreds of others like you:
There are two things going on right now for you. One is the loss of smell, and the other is your emotional reaction to it. It is important to understand that although these things feel tightly wound up together in your own mind, they are actually two different things.
Managing your anxiety about your loss of smell, or the arrival of parosmia, needs to be a priority for you. I often talk about this when I get to speak doctors. By the time you have a chance for evaluation in the examining room, your problems may well be far beyond just your nose. If smell loss is taking over every waking minute of your day, you need help in managing the emotional losses you are feeling. It can quickly become a vicious circle of ever more negative thoughts, fears about the future, about the permanency of your condition. If you find yourself constantly googling, second guessing your doctors, wanting to believe unproven reports for quick cures, you are seeing the signs. If you find that you are not coping, please talk to a counsellor of some kind for emotional support. Family members may not get it. This group is supportive thanks to all of you who surround every newcomer with your compassion, experiences and questions, but when things get too tough, seek medical advice.
We simply don't know what the outcomes of Covid-19 patients will be.
Who has the answer to this question? You do. You *are* the cutting edge of what we know about smell loss associated with the coronavirus. And the researchers and doctors who are trying to help are with us here, listening and trying to understand.
Statistically speaking, the chances of recovery are good. About 90% of you will recover to some extent. For 10%, it will be persistent, as it was for me. Two years felt like a very long time. After two years, I was ready to accept anything--any scrap of my sense of smell I could salvage. Many have asked "who here has recovered 100% of their sense of smell?", as if 100% recovery would be the only thing that would be enough. I think we have to think of this smell loss as an "injury" to the sense of smell. If you were severely injured in a car accident, you might have scars that would eventually heal, and you would feel emotionally like you could go out and face the world. But you would not ask when the scars would disappear.
I visited an ENT in Guildford last year to tell him about my work. While talking to him about how many patients can't cope with the anxiety of the condition, I thought of an analogy. Losing your sense of smell and finding your way back to some new normal, after an unknown period of recuperation time, felt to me like emigrating to a strange new continent. At first I was so homesick I couldn't function. I cried every day and no one understood why. Then in time, I started to get used to things, and one day I realised that I found my new landscape beautiful and it gave me pleasure. My ability to feel pleasure in all things returned. I still miss my home country, but I am happy where I am. I can experience my food and smell my loved ones, the out of doors, ambient smells, the seasons and the many insignificant details that our sense of smell feeds to our brains to keep us happy and complete. It's changed, but it is good.
Over and over I find myself telling people to give it time. Time is on your side. Stay here and continue to tell your stories. Because, like I said before, you are an important part of this crazy Covid story.