Long Covid & Chronic Illness Creating Missing Neighbours

What is the difference between Long Covid and Chronic illness? What are missing neighbours? Wondering why this is happening to you? Will therapy help?This article will answer these questions and more.

I once had a colleague who had Fibromyalgia and I remember being sceptical about her illness. At the time I was an avid mountaineer, sport climber and mountain biker. I spent all my spare time obsessively pursuing these sports.

My colleague managed her energy. She worked part-time and she arrived at work her breakfast a massive handful of pills and what ever food she wasn't allergic to. She was often suffering from migraines, she missed days at work and her stories of her weekend involved a lot of nap time.

I was ignorant and I didn't understand. Her experience was the polar opposite of mine. I would always be thinking about what she could do to cure herself. I would be miffed if she didn't turn up to events and she was always late to them when she did turn up.

The fact was this person was awesome, we loved her in the office and I missed her when she wasn't there!

Missing Neighbours

She was my missing Neighbour. Years later I became a missing neighbour. This concept posits that people with chronic illness are missing from life; they are not visible because they are so limited in ability to function normally. Not only are they missing from other people's lives but the isolation and loss experienced by these people can be devastating.

I first heard about this concept in a Netflix documentary Unrest produced by Jennifer Brea, a chronic illness sufferer herself. This doco chronicled the life for Jennifer and highlighted the plight of people with chronic illness.

What amazed me was the movement by chronic illness sufferers that galvanised itself from beds all over the world - demonstrations of family members with pairs of shoes lining the pavement representing the missing person. Millions Missing is the name of this movement.

Im always amazed at how people so marginalised can create a movement like this.

Along Comes Long Covid

Covid hit the world, a force like no other. Like curious spectators we watched the death tolls rise, cities locked down, bodies being stored in refrigeration trucks - fascinated and sickened by what was happening.

After a while we started hearing the term long covid.

People reporting fatigue, brain fog, muscle soreness, headaches, sleep problems and breathlessness to name a few. This was fascinating to all the chronic illness sufferers because it sounded exactly like what they had. Only now it was being recognised as a real thing!

For years chronic illness sufferers have spent countless hours in doctors' rooms pleading for recognition. Batteries of tests coming back "normal". With no evidence of being sick ,doctors often dismissed our missing neighbours as having pyscho-somatic problems or "burn out" and worst of all being told "its all in your head". I remember my doctor looking at me sceptically and telling me to go running, which I did and ended up in bed for four days. Not to mention scripts that could fill a suitcase, pills I didn't need and that wouldn't fix the problem. Don't get me wrong medication does help some things - so don't quit meds!

breakfast of champoins

Finally there is some recognition that this illness actually exists and it looks like there will be more research and hopefully some answers. Good news.

Bad news...

"The pandemic has exposed to the wider public what our communities have known for decades—that government, healthcare, and society at large have systematically deprioritized or erased people with disabling complex chronic diseases. This historical pattern laid the groundwork for the circumstance that people with Long COVID now find themselves in—little medical care, no FDA-approved treatments, and little societal support".

Over time, I am noticing that the literature is starting to use the term "Long Covid/ME" so it looks like the two are the same thing or they are slowly being blended together, in some instances being called a" sister disease". Got to love those siblings!

New Zealand situation

In my experience GP (general Practitioners) have little knowledge about how to treat Chronic illnesses. I spent countless hours researching the latest treatments and finding online groups to get information.

People chided me about diving into the Dr Google hole, the implication was that I was diagnosing myself unessesarily and that I should listen to my doctor.

The really frustrating thing about that is: a) my doctor didn't believe me and kept suggesting things that made me worse; b) the medicines prescribed to me were not going to solve the problem and c) I did not have faith that the GP knew how to treat this illness.

I had many tests and they all came back "normal" and yet I was having daily migraine like headaches, fatigue that felt like I was walking through think tar, constant nausea, aching muscles, swollen joints and more!

When I pleaded with her for more support her words were: "you have to go to a specialist and your symptoms are not severe enough to get seen"

It felt like because there was no medical evidence, it meant it was not real. I know that other people experience this lack of attention from their GPs on a regular basis. Local forums are where people share the sympathetic Drs list. This list holds about 10 Drs in the whole of the country.

How do people get sick?

It is widely acknowledged that people often get sick after a viral infection. Or that seems to be the trigger for the illness to take hold. I have read widely on this topic, desperately trying to find the magic answers for this question. In my case I don't think it was a virus, it was a perfect storm.

I spent years dealing with a very mentally unwell son, working in a high stress job, pushing my body to the limit, my approach to life is, to live it to the max!

Over time I noticed that I would wake up exhausted, nauseas and with a rash, this would happen about every four months. I would take a week off, most of which was spent in bed recovering. Vitamin infusions, healthy food, Drs appointments with no answers. After that week, I would be back to normal, training for marathons, climbing, working on big projects and pushing myself to the limit. Then the gap between these times shortened until I was constantly feeling unwell. I had to leave work.

I don't subscribe to the belief that it is just a virus that makes people sick. I believe that the virus is a trigger for you body to go into a state that produces theses symptoms. Our body decides its time to heal us and then the body can't shut off the healing and the inflammation processes don't stop - leading to chronic illness.

Hidden Illness Iceberg

What Works?

If I had that answer I would be a very rich person! We know people can recover, conversely some people get worse and some people stay the same for a long time. At this stage I believe the solution is very individual. Some things work really well for some people, and same things won't work for other people.

Infographic: Emily Darragh 2022

The Brain Training Controversy

There are many programs that help to reprogram how your body is processing the brains messages to help calm the nervous system. This system of recovery posits that our brains through some process of triggering, have moved into a state of high alert.

When we are in a state of high alert out bodies produce chemicals that if not turned off, can cause severe symptoms of chronic illness.

Through a systematic retraining of the brain we can learn how to turn off these signals and put our bodies into a calm state. This promotes recovery. The controversy is chronic illness sufferers have been told that by Doctors"its all in your head". Since brain retraining deals with systematically reframing how your brain transmits the stress signals in your body sufferers can feel like it confirms that "its all in your head".

But more importantly it puts the solution firmly in the control of the person with the chronic illness. The implication being that all the other meaningful supports: medical profession, community, therapy, healthy eating - where actual real people support the solution - are discounted.

Financial Impact of Brain Retraining

The other consideration regarding brain retraining is it is expensive. For people who suffer from chronic illness, money is a big issue. Often we are too sick to work, so live off benefits, partners, insurance or savings and expenses are high. Big costs that sufferers bear are:

• medication

• suppliments

• medical equipment

• medical appointments

• the latest gadgets promising miracles

• special food

• treatments such as physio

• alternative treaments

• bio hacking therapies

• the cost of living while you can't earn an income

• protections against chemical intolerance

This list is not exhaustive. But you get the picture - it's huge. So chronic illness sufferers have choices to make about how they spend what precious little money they have and it needs to work. Paul Ingraham puts it succinctly:

A claim like “you can cure your pain by changing your attitude” is nearly impossible to stop — it sells itself, because we so badly want it to be true. It is the perfect soil in which to plant seeds of neurological truth, to fertilize them with book sales and TED talks …

The stories of sufferers who have healed this way are compelling and what increases the enticement is that often the people offering the training have recovered from chronic illness themselves. This is not to say that it doesn't work. I believe it can for some people.

My perspective on this is: I believe this training can work for some people. The type of people this works for are people who can take the time to concentrate solely on the techniques, they have a firm belief that it will work and they can quiet their brain enough to concentrate and practice. I also believe that anything is worth a shot - you know you always miss 100% of the shots you never make, like in golf.

My main point is that we are all individuals and have differing ways of operating. We often have different stories of how we arrived at our illness. So it makes sense that we have different ways of recovering. It is obvious that our brains, emotions, collective experience and illness can all play a part in the onset and development of chronic illness.

How Therapy Can Help

Disclaimer: I am a therapist so obviously biased toward this kind of support but read on!

Research suggests that therapy can be a crucial aspect to coming to grips with a chronic illness. Because of the stigma associated with "its all in your head" illnesses, often people find little support and don't like to burden their supporters with the ongoing nature of symptoms and feelings associated with chronic illness.

Brooke Denmark conducted a study of people with a chronic illness found that there were three themes that people found the most helpful in therapy:

• validation

• help adjusting to the changes in their lives

• processing grief and loss
  

For me there was a long process of realising and accepting that I had a chronic illness. I went from running mountain marathons to not being able to get out of bed.

For me this was a monumental life change. I was employed in a fast-paced, very stressful and highly satisfying job. I resigned, no longer able to work.

I was facing financial ruin, plus all my coping strategies for living were taken away. I was dealing with a very uncertain future.

So the above findings ring true for me. I did not get therapy to help adjust to the change. I wish I did. It might have saved months of thinking I was dying of a mysterious illness, grieving my old life, feeling isolated and fighting through everyday and over-excerting myself.

Validation

Getting validation for your circumstances helps to affirm what you are experiencing. This is useful because it assists in alleviating feelings of isolation, fear and stigma.

Marsha Linehan, a key validation theorist, suggests that validation is a process in which a listener communicates that a person’s thoughts and feelings are understandable and legitimate.

Legitimising the chronic illness sufferers experience can lead to less distress and ultimately better outcomes.

Adjusting to change

For us humans, change can be terrifying we are hard wired to fear change. The reason behind this is called survival optimisation - we are engineered to survive at all costs. So when a tiger appears from the woods our whole being goes into survival mode. In modern times this is useful if we are about to be mugged, but change is often not life threatening - and yet we react like it is.

Change can feel life threatening - and we need support to work through these feelings of fear.

Adapting to life where we are often incapacitated takes time and therapy can help with learning new ways to enjoy life, advocate for ourselves with medical professionals and learn to adjust to new ways of being.

Grief and Loss

Often our life pre-illness was filled with work, socialising, hobbies, sports and contact with the outside world. Slowly but surely this all fades away as we gradually become more incapacitated.

...conditions create many serious losses, including loss of control over one's body, loss of friends and loss of valued activities...

Experiencing loss on this scale leads to strong emotions typically called grief. Its totally natural to feel this way. But grief unprocessed can lead to other unwanted consequences like flares of the illness, suicidal thinking and other unwanted gems.

This kind of grief takes time to process and can come and go, along with flares of the illness. Learning strategies to process grief and having someone to talk to can assist in dealing with this.

Why Therapy is Worthwhile

...Renee Madathil, PhD, an inpatient rehabilitation neuropsychologist ... “Our brains don’t operate in compartments; they operate in systems. When one part of the system is compromised, other parts are likely to run less efficiently, too.”

One part of the system to do with our illness that we can impact is our brains and emotions - this is where I believe therapy is useful. It can shortcut the amount of time it takes for us to adjust to our new life and it gives us much needed affirmation and support. Support and affirmation can lead to better outcomes according to research. In conclusion,

WE WANT BETTER OUTCOMES!

Alisa Woodruff Therapist

Check out my website if you would like to know more about my practice: www.ngakautherapy.com

Some online resources I found useful:

• I found this guy really useful. He has suffered chronic illness and he is very real about his struggles. He interviews people who have recovered from chronic illness. There stories are really interesting and full of useful tips. There are a lot of brain retraining programmes profiled and he chronicles his failures and successes with these. This is available in a podcast form as well.

• https://www.youtube.com/c/TheChronicComeback/null

• Facebook groups - I often find useful tips on coping with certain aspects of illness. Like I found some compression socks that helped alleviate painful feet. etc. Sometimes I find Facebook groups can be unhelpful, in that people who are members have been unwell for a long time and be negative about new things to try.

• I read any stories I could find on people becoming well or building a satisfying life while being unwell. This helped me have hope.

Sources used for this blog:

American Psychological Association. (n.d.). Treating patients with long COVID. Monitor on Psychology. Retrieved August 12, 2022, from https://www.apa.org/monitor/2021/07/treating-long-covid

Denmark, B. (2017). Patient perspectives on mental health therapy for Myalgic Encephalomyelitis (ME) and chronic FATIQUE syndrome (CFS). Smith ScholarWorks. Retrieved August 23, 2022, from https://scholarworks.smith.edu/theses/1887/

Deter, H.-C. (2012, January 31). Psychosocial interventions for patients with chronic disease - biopsychosocial medicine. BioMed Central. Retrieved August 23, 2022, from https://bpsmedicine.biomedcentral.com/articles/10.1186/1751-0759-6-2

Edmond, S. N., & Keefe, F. J. (2015, February). Validating pain communication: Current state of the science. Pain. Retrieved August 25, 2022, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4477266/

Hale, C. (2018). Reclaiming chronic illness - An introduction to the Chronic Illness Inclusion Project. Retrieved August 12, 2022, from https://citizen-network.org/uploads/attachment/617/reclaiming-chronic-illness.pdf

Hall, M. (2021, November 27). Is long covid a new type of chronic fatigue syndrome? RNZ. Retrieved August 14, 2022, from https://www.rnz.co.nz/news/what-you-need-to-know/456714/is-long-covid-a-new-type-of-chronic-fatigue-syndrome

Ingraham, P. (2022, June 9). That pain reprocessing therapy study is way too good to be true. www.PainScience.com. Retrieved August 19, 2022, from https://www.painscience.com/microblog/that-pain-reprocessing-therapy-study-is-way-too-good-to-be-true.html

Managing chronic fatigue syndrome and fibromyalgia. Help. (n.d.). Retrieved August 27, 2022, from http://www.cfsselfhelp.org/library/26-grieving-your-losses

Newmeaction. (2022, August 11). #MillionsMissing September. #MillionsMissing. Retrieved August 16, 2022, from https://millionsmissing.meaction.net/protest2022/

Penn, P. (2001). Chronic illness: Trauma, language, and writing: Breaking the silence*. Family Process, 40(1), 33–52. https://doi.org/10.1111/j.1545-5300.2001.4010100033.x

Shepherd, C. (2021, April). Long Covid and ME/CFS. https://ccisupport.org.nz/wp-content/uploads/2021/08/Long-covid-and-MECFS-May-2021.pdf. Retrieved August 14, 2022.

Tony Ward, M. A. (H. (2015, October 18). The Experiences of Counselling for persons with me. Counselling and Psychotherapy Research. Retrieved August 20, 2022, from https://www.academia.edu/16965186/The_experiences_of_counselling_for_persons_with_ME

In a historical view we know that, the patient-physician relationship [1] is especially important for every medical/therapeutic action for patients with chronic diseases. This also is supported by the new placebo literature that explains how the thinking, expectations, and trust of patients in the treatment procedures and in the person of the physician is essential for a positive response, e.g. reducing of symptoms or influencing the healing, of the disease [2, 3].