By K W Warburton, The Reluctant Spoonie

Dear person with long-covid,

Reading about the symptoms and experiences of people with long-covid brought up many parallels with the start of my own chronic illness. Six years ago, I too was hospitalised suddenly with a viral infection and my condition deteriorated for there until I was predominantly bedbound. The symptoms of long-covid are similar to most post-viral illnesses and are not unique to the coronavirus. You are not alone in experiencing this wide range of symptoms.

Right now, you are probably still in the anger stage of the grief cycle. You will be angry when you can’t do something that you used to. For example, going to work or get up at the same time every day. Similarly, Cooking, washing and other daily tasks may feel difficult or even impossible at times. Walking through treacle is how I used to describe it because every task required more energy and concentration than it used to.

an open letter to people with long-covid. grief cycle diagram.
Image via https://complextruths.org/resources/chronic-pain-cycle-of-grief/

Listen and learn

There will be days where you can’t do anything and you will feel as if you are wasting your life. Let me be the one to tell you that you are not. Resting is productive. Over time, you will see improvements, perhaps not day by day or even week by week. When you look back, six months or a year from now, you should be able to see some progress.

I invite you to learn from those who have been living with post-viral conditions for many years. It is important to share your symptoms and experiences of living with long-covid as it is a new illness. However, you are not yet in a position to provide advice or guidance for others beyond that. People with post-viral conditions such as Postural Orthostatic Tachycardia Syndrome (POTS), Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) and similar chronic illnesses should be the ones who you are looking to for advice right now as you navigate your new life with a chronic illness.

Get my guide to living with POTS here

Join our community

During the early years of my illness, I got most of my information from anecdotal articles and personal essays about living with various chronic conditions. It was from those articles that I learned management techniques for my own illnesses. Unfortunately, research into POTS, ME/CFS and other post-viral illnesses is still limited and most studies focus on symptom management. Your doctor may not be knowledgeable about post-viral conditions and it is common for them to dismiss these types of illnesses.

Read more:  How to Manage Chronic Illness Induced Nightmares

If you choose to, you can join the online chronic illness community and connect with others with long-term conditions. Please be respectful that you may have access to services that people with POTS and ME/CFS have required for many years. Therefore, do not be offended if people do not welcome you straight away. People with long-covid have had more press coverage and awareness campaigns than we’ve had for decades.

Resources

I hope that long-covid will lead to more research and treatment options for those with long-term post-viral illnesses. Right now, we can work together to push for more research so that no-one with a post-viral illness loses their quality of life.

Yours,

A person with POTS and ME/CFS (6 years +)

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