Some strategies when you feel as though people don’t understand

Back in 2019, Chrissi Kelly shared some strategies for looking after yourself. Just as relevant today, we wanted to share them again.

“Losing your sense of smell can have devastating consequences. I say this as someone who has experienced it personally as well as having moderated hundreds of conversations about our diminished quality of life. In discussing this – even after 10 years of living with this condition to one extent or another – the phrase that always comes up is this: I can’t even explain how awful this is.

In addition, we are often told by those who do not understand that losing our sense of smell is a much better thing than losing vision or hearing. This is never helpful. Being invisible, smell seems easily dispensable. Smell is so undervalued that in a recent survey, more university students chose to give up smell over the use of their telephones.

So when you are faced with this unique bereavement, and your partner or family does not understand, what can you do? Here are some tips:

For your wellbeing

Keep talking about it. You are processing this change in your body, your life, your world. It’s hard and it will take time.

• Most times, your family wants to be supportive and help you. But they don’t know how. Coping with smell loss takes the support of those in your care circle.
• We have trouble putting into words just how this is affecting us, so don’t be too upset with them when they don’t get it.
• Losing your sense of smell creates changes in the brain. We don’t know enough about just how these physical changes in the size of the olfactory bulb influence our feelings and emotions, but we do know that many people report the same thing: feelings of being isolated, cut off, “behind a glass wall”. “I didn’t feel like part of the world—just separated” was another common phrase.
• Scientists are aware that clinical depression can actually cause a diminished sense of smell in a healthy person. The relationship between smell and depression is well recognised. When researchers want to investigate smell loss in experiments in rats, they start by taking away the rats’s sense of smell by removing its olfactory bulbs.
• If ever you feel you are in real danger because you can’t cope, seek medical help.

Mealtimes

• When a partner produces a meal that you can’t eat, tell them. Remind them how devastating these changes are for you, and that you need their support. You don’t have to eat what is not palatable.
• Keep a list on the fridge that show what foods are “black list”. Bear in mind that this will change and will need updating frequently. It’s helpful for meal preparation that you keep a “safe foods” list too.
•  Your “black list” foods should be respected. These foods should not be prepared in the house. Sometimes just ventilating the room after cooking is not enough.
• If your family insist that you try something that you feel you can’t stomach, you should feel you can say no.
• Ask a family member or friend to help you explore new foods. The best way to do this is to compare things. Get together three things that are sort of similar–three condiments, three kinds of soup, breakfast cereal, fruit, nuts–chose what you like. Taste and compare the foods, and discuss what you like and don’t like about them.
• Your assistant should do the same and discuss with you. You may also find that things you didn’t like before are palatable to you now. A thoughtful assistant can really help.

Getting your mind off smell loss

• You might find that a hobby that engages the mind and hands is a good way to get your mind off your smell loss. Knitting, painting, sewing, jigsaws, woodwork are all good examples. 
• Music and cinema are also a way to engage the mind that is separate from our sense of smell. Music can be evocative of memory, so you may wish to try this as a way to remind yourself of past experiences.
• Getting outdoors is good for our sense of well being. Put on your walking shoes and go!
• Exercise will increase endorphins and make you feel more positive.

Looking forward

If you have damage to your olfactory nerve from a virus, you have a good chance of regaining some sense of smell. People who have had a head injury have a lower probability of recovery, and it will probably take longer. Everything depends on the severity and nature of the injury. You can help yourself by using smell training.

Speak to others who have experienced the condition. Join an online group like the AbScent Network or Facebook groups, or enquire at your ENT clinic for local support groups.

It will take time to adjust to your new situation, but adjustment will happen. Take things one day at a time.”

February 17, 2021