The Landscape For CFS Is Changing

My advice

Advocate for yourself and the illness. Surround yourself with people who are supportive and understanding not disbelieving.

My recommendations

My story

I have been suffering from Chronic Fatigue Syndrome (CFS) also known as Myalgic Encephalomyelitis (ME) since I was about 19 years old.

I am unable to exert myself much and when I do, it may lead me to experience what I call a “flare up” which usually occurs 1 to 2 days afterwards and can last days to weeks.

A flare up is where I have extreme fatigue, brain fog, sore throat and swollen glands. The effects of exertion are not resolved by a good night's sleep (like it is in healthy people and like it did for me before I had the disease).

Symptoms can be triggered by exercise, other illness (ie a common cold), trauma (ie a shoulder dislocation, surgery), temperature changes, exposure to some chemicals, lack of sleep and psychological stress.

Although some flares ups are predictable (e.g. from the above), they are often unpredictable and I am unable to identify a cause, which can be even harder to deal with and accept.

Imagine your body forcing you to lie in bed for days and not being able to do the things you want or need to do.

Some people might think a few days in bed sounds ideal, however, often my brain feels so foggy that even carrying out a mental task such as reading a book is difficult.

I cannot push myself to do something as this often makes the symptoms worse and the recovery longer. I have to surrender to lying in bed, feeling unwell. Often I am able to distract myself from how I am feeling by binge-watching Netflix or YouTube.

When I experienced a flare up when at work, I felt I had to push through. If I took extra sick days, I felt guilty. I have been afraid to tell my employers for fear that they would not understand.

I have found it difficult to maintain full time work and cope with the day to day struggles of life. I am unable to do some of the things I love. It is especially frustrating as I was a very active person and loved playing sport. Now I can see my body deconditioning.

Feeling a lack of control, confusion, frustration, fear, guilt and living with stigmatised CFS has led to poor mental health. I also suffer from anxiety and depression.

Anxiety and depression in people with CFS is very common. I have read some research that people with CFS are 7 times more likely to commit suicide.

I am a lucky one though, as I have a mild to moderate form of CFS. I am usually still able to carry out normal daily tasks, work and do some surfing. However, many people have a much more severe form of CFS and cannot get out of bed. For some people it is said to be as or in some cases even more debilitating than Multiple Sclerosis.

I have found that despite CFS being a physiological illness, that counselling or talking therapy has greatly helped me deal with anxiety and depression and in dealing with the illness and how it affects my life.

I had to live with the disease for years not knowing I had it and with no support. I had several GPs test for everything they could think of but all results came back normal and they could not help me any further. Currently, there are no tests to diagnose CFS. Doctors diagnose based on your symptoms and by ruling out other potential causes.

I felt like I really had to figure things out for myself and advocate for myself. It has been an extremely difficult journey and I would always blame myself, thinking I was lazy or that it was my fault.

Many doctors I have seen do not understand CFS and some do not believe it exists or they think it is just psychological.

I did not get a diagnosis until I asked my GP in the UK to refer me to a local CFS service where I was diagnosed at age 28. I am now 32.

In the recent past, the landscape for CFS is changing. It is becoming more recognised as a real physiological illness. Research is showing there are physiological and biochemical differences in people with CFS when compared to healthy controls. However, it is still unknown what causes CFS and there is little in the way of treatment.

CFS still has a massive stigma attached to it. Not only was it thought to be all in our heads but people just do not understand the illness and I get the attitude of “well I get tired too”. But it's more than just being tired.

For a lot of people with CFS, the disease is invisible. It is felt but not seen and many of my friends only see me at my best and do not see the struggles I go through.

As I have learnt more about my disease and myself, I have been able to talk about it with my friends and family. Having support, understanding and acceptance has been integral for me to be able to cope and live my life with CFS.