What does it mean to be diagnosed with, and to live with a long term condition?
A long term condition is just that. A condition that you are stuck with long term. It’s incurable. It affects your quality of life and it isn’t going to go away. It is something that you have to learn to live with for the rest of your life (or until a cure is found). It doesn’t just affect you – it affects your family, friends and those around you too.
Before I was diagnosed with my long term condition (Parkinson’s Disease), even though I had friends who had been living with long term conditions for many years, I had no idea of the daily challenges, physical and emotional involved with living with such a condition.
Although long term conditions vary immensely, I’ve discovered there are many similarities. Learning to accept that you (or a member of your family or a friend) have a condition that is not going to go away can be a difficult process. Your body doesn’t function the way it used to, and that can be frustrating.
Here’s a big one – stress aggravates symptoms. So whatever condition you may have, finding ways to reduce stress is so important. Looking after yourself mentally and physically is also important. Self-care takes on a whole new meaning when you have a long term condition.
There’s also the fact that no matter how well we look after ourselves, we usually can’t do it alone. Our family and friends are often our main support. However it can be difficult for them to fully understand what we are going through, and they need support too. That’s where support groups can help both people who have long term conditions and their family and friends.
To help us to manage our symptoms, we also often need the support of medical experts – including consultants, specialist nurses, physiotherapists, occupational therapists.
Medication and treatments – again these vary hugely, but many of us rely on these on a daily basis to help us get through each day. And we often have to make decisions about medication and treatments. They often have side effects – sometimes quite severe. Are the side effects worth it? How long will they continue to work for?
Sometimes, we think we’ve got everything under control and are happily ticking along. Then out of the blue, our symptoms get worse and our bodies no longer respond to the treatment we’ve got used to. So everything changes and we need a different approach for treatment. Like changing seasons, it’s never all blue skies, but over time, we can learn to adapt accordingly.
Good days and bad – everyone has good days and bad. The difference when you live with a long term condition is that on a bad day, your symptoms are aggravated. Many long term conditions have a whole host of symptoms that you only really find out about when you experience them.
However in spite of all of this, many people live with long term conditions, and use their experiences to help others by fundraising for charities, volunteering, and raising awareness.
I would like to dedicate this blog to all those living with a long term condition – including close family and friends – because they live with it too.
In particular I would like to dedicate this blog to my friends who live with long term conditions every day – not forgetting those who care for a loved one with a long term condition. They have inspired me with the way they deal with their condition (or that of their loved ones) and refuse to let it define them or take over their lives. Some of the strongest, bravest and most caring and compassionate people I know have lived with a long term condition for some time and in some cases for most of their lives.
Finally, I would like to take this opportunity to raise some awareness. This may be a bit of a bold ask, but I challenge all of you reading this blog, to spend just five minutes a day this week finding out a little bit more about a different long term condition each day. There are numerous conditions – too many to list them all. So with my friends in mind, I would like to suggest that you might choose to visit one of the following websites each day for the next seven days (a different one each day):
Arthritis – Arthritis Care https://arthritiscare.org.uk/
Asthma – Asthma UK https://www.asthma.org.uk/
Autism – National Autistic Society http://www.autism.org.uk/
Chronic Lung Disease – British Lung Foundation https://www.blf.org.uk/
Coeliac Disease – Coeliac UK https://www.coeliac.org.uk/home/
Dementia – Alzheimer’s Society https://www.alzheimers.org.uk/
Dravets Syndrome – Dravet Syndrome Foundation http://www.dravetfoundation.org/
Diabetes – Diabetes UK https://www.diabetes.org.uk/
Epilepsy – Epilepsy Action https://www.epilepsy.org.uk/
Fibromalygia – Fibromalygia Action UK http://www.fmauk.org/
Lupus – Lupus UK http://www.lupusuk.org.uk/
Motor Neurone Disease – Motor Neurone Disease Association http://www.mndassociation.org/
Multiple Sclerosis – MS Society https://mssociety.org.uk/
Parkinson’s Disease – Parkinson’s UK https://www.parkinsons.org.uk/
Sarcoidosis – Sarcoidosis Association
UPDATE (25 January 2017): This blog has now been published by Healthwatch Essex: