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Barriers to Recovery

Updated: May 24, 2023

Within the long covid community, there are far more stories of individuals making a full recovery compared to those that belong to the chronic fatigue syndrome (CFS) community, also known as Myalgic Encephalomyelitis (ME). If you are not aware of ME/CFS then I would certainly encourage you to learn more about it. It is estimated that nearly 2 million people in the UK experience long covid syndrome, whilst 250,000 people suffer from ME/CFS. Those that have ME/CFS have been living with chronic pain, fatigue, and an abundance of other hideous symptoms for many years before the pandemic. It is only since covid-19 and the resultant complications of long covid, that awareness for ME/CFS has increased. For some individuals living with ME/CFS, the hope for a part or full recovery is non-existent. They have been tormented by their symptoms for so long that there appears to be no way out. For some, they believe there is no cure, there is no quick or long fix. As discussed in my previous post ‘The Body and The Brain’, this mindset can actually be extremely damaging to the individual’s physical, mental, and emotional health. It is a barrier to recovery. Which is what I want to write about today.

Since being unwell, I have been extremely fortunate to have been able to undergo a full ‘MOT’ of my health. If I was a car, the DVLA would be very happy with me! These tests worked to fully rule out anything sinister that could be causing my symptoms. To this date, I have had the following:

  • Four separate blood tests - that individually assessed the functioning of my organs, mainly my kidneys, liver, and thyroid. They have also revealed my blood count, infection markers, and any vitamin deficiencies. One also tested for Lyme disease.

  • A spirometry test and an exhaled nitric oxide test to rule out asthma or any issues with my respiratory system.

  • A chest X-Ray to eliminate physical damage to my lungs or any possible lung conditions.

  • An extensive skin prick allergy test to determine whether any foods, pollen, dust mites, or animal dander are a contributing factor.

Alongside these assessments, I was required to also undergo multiple tests due to a heart murmur that the attentive respiratory specialist detected at the very start of my symptoms. He was keen to refer me to a cardiologist to check it out further. The cardiologist decided it was a very good idea to explore the cause of the noise and I therefore had an echocardiogram (external ultrasound of the heart). It was especially important to investigate the sound because it was not possible to confirm whether the murmur had been there my whole life or whether it arose due to the initial infection. My heart appeared normal in the echocardiogram images, but to be on the safe side I was required to have a cardiac MRI and a trans-oesophageal echocardiogram (internal ultrasound of the heart - yes it is as gruesome as it sounds…google it if you dare!).

Anyway, every single test I underwent came back all clear. Including my heart scans (turns out one of my valves is just slightly smaller than normal). I am, of course, extremely fortunate to get the news that I have ‘full health’, I know that lots of others aren’t so lucky and I am well aware that if you don’t have your health, you don’t have anything. However, I was still feeling very unwell, and thus, a long covid diagnosis was given. At the time of writing, I have recently been referred by my GP to the long covid clinic and I should be hearing from them very soon. Wish me luck!

Just to note, I am aware of how lucky I am to have the privilege to have gotten all these tests done, I know many aren’t able to get a full health assessment through their GP surgery and referrals are slow and at times very difficult to obtain. I go on to discuss this later on in the post.

There were times during this journey where I felt worried about how long my recovery would be and I questioned whether I would ever feel 100% better. It wasn't until I managed to see a GP face-2-face that I felt differently about this. The GP carefully analysed all my test results for roughly five minutes and finally said three words to me that changed my outlook on what I was going through. She said very bluntly “You are healthy”. This was a light bulb moment for me, because although I knew every test done had come back all clear, I didn't exactly feel the pinnacle of health. I still thought there could be something wrong. Those three words the GP said to me threw all those thoughts away from my mind. If I am healthy then I know I can get better. There was no other way of looking at it for me. Naturally, I am a pretty positive person, so I like to believe I would have come to this conclusion anyway. But there have been some very bad days where at times I couldn’t see how I would ever feel any different. The 10 minute appointment spurred me on to know that there will be a day when I will wake up without any fatigue or pain. Heck, I may even feel so well that I will jump out of bed and run a 10k, who knows, miracles can happen! But as aforementioned, some people have not received the same advice, or they do not possess a similar mindset and this can be catastrophic for recovery.

This brings me to review my thoughts on the barriers to recovery from long covid. Perhaps the most significant hurdle is what I like to call the ‘fatigue-exercise loop’. We have been taught since we could walk that movement and exercise is the key to a healthy lifestyle, which it is. There have been endless studies on the positive impacts of exercise, such as joint and bone strength, cardiovascular circulation and not to mention mental well-being. That is why lack of movement can be so disastrous. I used to work in a care home on the dementia ward during my university holidays and I saw firsthand the severe consequences of the absence of activity. Although the quality of life of those that were able to walk at pace around the ward was still fairly poor, the difference in their mood and cognitive functioning compared to those that could not move was undeniable. Exercise is important. Exercise is needed for a healthy life.

When I first became unwell, even walking down the stairs felt like a marathon and exercise was out of the question. My initial reaction to getting long covid was to ‘push through it’ or 'exercise your way out of it'. But it is only since learning about long-covid recovery methods from the long-hauler community that I found how wrong this mindset was. I have since learned about ‘pacing’, which is a strategy that works to balance activity and rest to manage symptoms. I believe this ‘fatigue-exercise loop’ is a massive barrier to recovery. The symptoms (fatigue, breathlessness, muscle pain/weakness, low mood/motivation) prevent you from moving, but this movement could in fact support recovery. However, to complete this cycle, if there is too much movement, it can make the symptoms worse. I made a picture to represent it…because images are far more helpful than words (in my opinion!)

I would hope the diagram demonstrates how it is a cycle that can be difficult to escape. The best way of describing it is that there is a ‘sweet spot’ for the use of exercise in recovery. If you do too little and lay in bed all day, you risk more intense symptoms, such as fatigue, muscle aches, and particularly low mood. Some sufferers though do not have a choice on the levels of activity they can complete as they are bed-bound for months on end at no fault of their own. On the other hand, if you push your body outside of the ‘sweet spot’ range by doing too much physical activity, it can also cause worsening symptoms, such as muscle weakness, migraines, breathlessness, and heart palpitations. A study on long-covid sufferers done by the University of Leeds (Parker, 2022) found that over 75% of participants said their symptoms were made worse after exercise. This is why the pacing strategy is effective in supporting long-covid symptoms by cautiously controlling and monitoring the activity levels of individuals. Nonetheless, the fatigue-exercise loop is a barrier to recovery and one that I have certainly been suffering from.

Just a side note: a nurse that was off work for 8 months due to long covid mentioned to me that swimming really helped her recovery when she felt she could finally get back into exercise. I had not yet considered this form of activity, but I am definitely willing to give it a try!

The second barrier of recovery I want to highlight focuses on the psychological strategies for recovery. Meditation and mindfulness are the most common methods but I have also previously mentioned brain re-training programs. All of these strategies are accessed online, on social media platforms or apps, such as head space. Alongside these are in-person methods, such as cognitive behavioural therapy (CBT), clinics, and support groups. Whatever the psychological technique, they all rely on some form of motivation or money to access them. Focusing on the motivation side of this, I have found through personal experience just how difficult it can be to persuade myself to complete a 5-minute guided meditation or explore brain retraining programs online. Before long covid, I would have considered myself a 'problem solver' and would typically not rest until I implemented the best solution. Now though, I have been finding it more difficult than usual to be motivated to do things that I know could ultimately support my recovery, weird! I believe it may all be down to my symptom and there is a specific scientific explanation for this. It has been scientifically proven that individuals with long covid experience metabolic rewiring and depletion in ‘happy hormones' such as serotonin and dopamine (Sadlier, 2022). These chemicals play a well-known role in the functioning of mood and motivation. So if we have less of it, then we have less motivation to do anything, let alone meditate for hours on end or attend a support group. As for the financial barrier, many brain re-training courses cost around £200-£300 and don’t even get me started on therapy. For example, a subscription for the popular Gupta Program is roughly a minimum of £260 for the year and the cost for a CBT session starts at around £60 for an hour. In addition to this, if you really want to get an extensive health assessment then it is probable that the private health industry is the quickest and most exhaustive route to go down. That’s not to say all of these things are not worth considering and pursuing, however, for many people suffering from a chronic condition, they are off work and an income is not guaranteed.

This brings me to my third barrier. It’s no secret that vitamins, supplements, and specific diets play a role in supporting the normal functioning of the body. Therefore, there is an abundance of evidence to suggest that what long-haulers consume facilitates or delays their recovery. A study completed by Barrea et al (2022) gave some insight into what foods may support long-covid recovery. Essentially, it has been decided within the scientific community that an anti-inflammatory and immuno-stimulating diet is most suitable, which, now that I think of it, seems pretty obvious! A summary of this is shown below.

Dietary recommendations for patients with post-COVID-19 syndrome (Barrea et al. 2022)

As you can see, foods that are vitamin-packed (particularly C and D) are always favorable, which means eating lots of colourful vegetables and fruit. In addition, it is important to eat high-protein, low-fat foods, such as chicken, turkey, and eggs, along with lots of whole grains and healthy fats. It is also about reducing all the ‘bad foods’ that we know all too well of (normally this is all the yummy stuff!). For example processed meats, refined sugars, high-fat foods, processed carbohydrates, gluten, and of course, alcohol. This is typically what you would see in a ‘Mediterranean diet’ (minus the alcohol part!) and unfortunately, this does not mean you have to move to sunny Spain to get it. However, it is very important to note that these diets don’t necessarily come cheap. With the cost of living crisis well underway (has anyone seen the new price of ketchup these days?!), healthy foods can be difficult to not only buy but also prep and store. We all know how easy it is to buy a cheap frozen pizza, stick it in the freezer for a month and whip it out when we are hungry and short of time. But I am certain that a nutritionist or doctor would never recommend a frozen pizza to support the recovery of a chronic condition. However, the reality for many people is that superfoods, such as quinoa and avocados, simply can’t be on their shopping list each week. What's more, cooking a healthy meal requires more time and energy, something that sufferers of long covid simply do not have. This is where the food poverty and health inequality debate crops up. It is a very real thing for many people and it needs to be talked about as so much more has got to be done.

In addition to diet, lots of long-haulers have resorted to taking vitamins and supplements to aid their recovery. I have been taking Vitamin D, probiotics, and co-enzyme Q10, and let me tell you, they do not come cheap! I do not think I would have bothered if I was not in the fortunate position of having a Mum that forces them down my throat every morning. They are just so expensive! There is no doubt that vitamins and supplements are luxury-good products and can only be afforded by those with a disposable income. Many people that I have spoken to that had or have long covid were ‘front-line workers’ during the thick of the pandemic. It is no secret that the majority of key workers were on low incomes, such as nurses and paramedics. Therefore, I can only assume that many people suffering from long-covid do not have a large disposable income in the first place, let alone after they have been left unable to work for a long period of time. The cost of recovery is a very significant barrier for long-covid sufferers and it's one that needs to be prioritised.

The final barrier I wish to discuss in this post is what I would simply name ‘guilt’. Many people that have been unlucky enough to get long covid are known to be ‘perfectionists’ and ‘people pleasers’. Before becoming unwell, we would go about our days prioritising everyone and everything over ourselves, no matter what. I am certainly guilty of this (if you pardon the pun!). I mention this in a previous post ‘Picture-Perfect’, whereby the feeling of guilt is probably the biggest roadblock to rehabilitation there is. Within my first post, I used the term ‘a symptom of the symptoms’ to describe my guilt because that is exactly what it is. I had always been so used to placing my needs below everyone else’s and when I became unwell, that didn’t just disappear overnight. I therefore, found myself feeling incredibly guilty and worried about letting people down and being a burden on others. This guilt presented as anxiety and it was very obvious that it contributed to intensified symptoms. Furthermore, when a ‘people pleaser’ finds they are unable to do their natural job of pleasing people, there is a tendency for that individual to push themselves so that they can. This phenomenon doesn’t just happen for the benefit of other people, it can happen as a result of internal pressures too. For example, even when I have been feeling very unwell, a little voice inside my head would coerce me into doing something so that I can feel better about myself (uh oh, maybe that is why I have started this blog!?). These personality traits can be extremely damaging for the recovery journey, because at every twist and turn there is always something the individuals feel they should be doing. Even though the only thing they need to be focusing on is resting, pacing, and recuperation.

To conclude, it is clear there is an abundance of barriers to recovery that can limit an individual in their recovery for long covid. But, I wanted to end this post by saying something to those that have a loved one suffering from long covid. At times, it may appear as though your loved one isn’t doing everything they possibly can to maximise their chances of feeling better. I know I haven’t at points. Nonetheless, I would urge you to do the following four things

  • Be patient - they will work on their recovery in their own time at the right pace for them.

  • Be understanding - talk to them about their feelings and thoughts on what they feel they should be doing.

  • Be knowledgeable - Learn about long covid and maybe even CFS/ME. Maybe do some independent googling into known recovery techniques. It is likely though that your loved one has already done this, so have open discussions that are free of condescension.

  • Be a member of their team - ask them if there is anything you could do to support their recovery. For example, offer to cook a healthy meal for them or make them a cup of tea. Even if they say no, just make it for them anyway…chances are they will eat/drink it!

  • Be encouraging, but not pushy - help them get out of their ‘funk’. For example, offer to go on a slow walk with them if they are feeling up for it and haven't been internally motivated to do so.

If you are one of my family members reading this (chances are that you are ), thank you for everything you have done to support me and reduce the number of barriers I have had to face. You have done all of the things mentioned above and more.

And if you are not one of my family members (first of all, wow! Thank you very much for taking the time to read this post, you are in no way obligated to do so!), then please be aware of these barriers to recovery. I would definitely follow any advice on how to minimise the hurdles long-haulers are facing. Because who knows, you may be a significant barrier or boost to their recovery.

Articles referenced

Barrea, L., Grant, WB., Frias-Toral, E., Vetrani, C., Verde, L., Alteriis, G., Docimo, A., Savastano, S., Colao, A., Muscogiuri, G. 2022. Dietary Recommendations for Post-COVID-19 Syndrome. Nutrients. 14(6): 1305.

Parker, M., Brady Sawant, H., Flannery, T., Tarrant, R., Shardha, J., Bannister, R., Ross, D., Halpin, S., Greenwood, DC., Manoj Sivan. 2022. Effect of using a structured pacing protocol on post-exertional symptom exacerbation and health status in a longitudinal cohort with the post-COVID-19 syndrome. Journal of Medical Virology. 95(1): e28373.

Sadlier, C., Albrich, WC., Neogi, U., Lunjani, N., Horgan, M., O’Toole, PW., O’Mahony, L. 2022. Metabolic rewiring and serotonin depletion in patients with postacute sequelae of COVID-19. Allergy. 77(5): 1623-1625.

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Jason G
Jason G
Jun 09, 2023
Rated 5 out of 5 stars.

Long Covid has been part of my life since 09/20 and have experienced many ups and downs in this journey. I feel for everyone who has experienced any or all of these symptoms on a continuing basis. Started to feel a lot closer to me back in May 2021, but was stricken with a second exposure to Covid-19 and it knocked me all the way back to the starting over point. Since then, not much change in symptoms, passing exams with a "healthy" heart, lungs etc., even experimenting with many different medications, but not much has helped yet. The cyclical symptoms are the hardest part of this experience as they take a lot of you mentally and physically for sure…


Ian Walters
Ian Walters
May 22, 2023

Thanks for sharing your latest do have readers and I find it so helpful as it enables us to better understand the numerous challenges faced by those suffering with "Long Covid". Great to hear the "you are healthy" message for you and keep working at and when you can.

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