Chronic Fatigue Syndrome Awareness Week – (And What it Feels Like to Have CFS)

This week is Chronic Fatigue Syndrome (CFS) Awareness week and in honour of that I would like to focus in on what it is like to have this terrible illness both here and on my Facebook and Instagram pages, both to raise awareness and also to help those of you suffering from CFS to feel seen and understood. I was diagnosed with CFS and Fibromyalgia a month before my 21st birthday (and later POTS) and suffered from a severe version of it, that left me bedridden and in a wheelchair, for about 8-9 years. I am, however, now recovered and thankfully no longer consider myself to have it!

If you had asked me back in 2016-2018 what it feels like to have Chronic Fatigue Syndrome, I’d have said that it feels like having an eternal flu that never goes away. Imagine getting the flu and never getting better. Indeed, many cases of CFS are triggered by a sickness of some kind, whether a virus, bacterial infection, parasites, or even fungi like black mold. For me, a simple cold triggered a rapid decline which led to my becoming unable to walk and then bedridden. Post 2020, COVID-19 can also trigger it. When we get sick we expect to recover again in a few days or weeks. But for many people, they don’t get better. Many go on to develop CFS which includes flu-like symptoms and so much more.

Having CFS feels like slowly losing our life and the parts of us that make us the person we are. Extreme fatigue, exhaustion that goes beyond exhaustion, is a key symptom of CFS. This, combined with dozens of other symptoms, make keeping up with our normal busy lives increasingly difficult, and, in many cases, impossible. We find it harder to do the things we used to do so easily – normal life things, like cleaning the kitchen, going to the shops, and brushing our teeth, and after doing them we collapse into bed or the couch. Overdoing such activities leads to post-exertional malaise, an increase of symptoms after exertion, that often come 24-48 hours afterwards. This leads to a crash which can leave us in bed feeling much worse than normal. It can take days or even weeks or months to recover and get back to baseline. Then, once we’re feeling better, we overdo it again, and it triggers post-exertional malaise and another crash, and the cycle starts all over again. We call this the push-crash or boom-bust cycle. This is why having CFS is so incredibly debilitating. This is why people with CFS are often unable to work, unable to socialise, unable to do housework, unable to engage in their hobbies, unable to exercise, and often unable to care for themselves. This is why so many people with CFS end up isolated and alone, housebound, bedbound, many with little to no support. I have heard of people with CFS in their thirties ending up in nursing homes because they couldn’t take care of themselves and there was no one to support them. This is a tragedy. I was lucky to have my family to care for me during the worst years, but many people are devastatingly not so lucky.

CFS feels like you’re slowly dying while knowing that you aren’t going to die, so it feels like there is no escape from the perpetual misery and suffering. Since your body is causing the suffering, you can’t leave and you never get a break. Being bedridden with severe CFS, Fibro, and POTS for two years was one of the worst things I have ever experienced, and I wouldn’t wish it on my worst enemy.

I remember waking up from difficult nights in a crash. I felt like I was tied to my bed with lead chains while an elephant was sitting on me. I literally felt crushed. I could barely move. To move meant pushing against that hideous invisible weight and I was so weak. Many people describe it as feeling like they’ve been hit by a bus. My body was in horrendous pain day in and day out, 24/7. I felt like I had the flu because I had constant nausea (without vomiting), malaise, and other flu-like symptoms. But it was worse than the flu. My body was ridiculously weak. I could barely lift my phone and some days had to prop it up in my duvet so I could use it without having to hold it. In the early days, I needed help to sit up in bed, and could barely do anything other than lay there. Slowly I was able to do small activities in bed like journal and read (not much though) and message friends – in very small amounts. Often if I had done one of these activities, I was too exhausted to eat at meal time. Some days I able to only eat half of my meal before falling back on to my back exhausted.

Honestly, as my mind goes back there now it is difficult to find words that capture the true horror of what it was like. If you are there now or have been there in the past, you know what I’m talking about. Otherwise, you just can’t understand what it’s truly like.

Having CFS feels like feeling alone and misunderstood. Because people with CFS are often unable to socialise or even leave the house, we feel lonely and alone. Added to this is the feeling that no one in our lives understands what we’re going through. Our reality is so different from theirs, after all. People mean well. They want to help, and try. But sometimes they say and do things that hurt more than they help and that adds to our feeling misunderstood, which makes us isolate more, which makes us feel even more alone. This misunderstanding does not only come from friends and family, but also from medical professionals. To this day I hate going to the doctor because of the experiences of endless frustration and pain that trying to get help from the medical system causes. Medical gaslighting is common. Many people with CFS are told it’s all in the head or that others have it worse. To this day, if I have been tested for something and the results are negative, my doctor smiles like what is the problem, you’re fine, while I’m still struggling with very real symptoms. This leaves us feeling like there’s no help from the medical professionals who of all people are supposed to help us, which again increases our feeling misunderstood and alone.

Secondary depression and anxiety from the experience and trauma of having CFS is very common. Chronic illness of any kind increases anxiety levels because it is scary and there are so many unknowns. What is wrong with me? Is it serious? How long will I have this for? What if it never goes away? What if my test results are negative again? Can anyone help me? What if I have to live with this forever? And so on. Added to this is anxiety and fear around our illness worsening, and particuarly having crashes. Once you’ve had a few serious crashes you come to fear and dread them and to avoid doing anything that will trigger them. This is why, when you recover, it can be scary to start doing again things that once made you feel so much worse. Depression and feeling hopeless and helpless are common too. They certainly were for me. It is difficult to hope when your hopes keep getting dashed over and over again. Eventually you are too scared to hope because you don’t want to be disapointed again. This is especially true of doctors, tests, and treatments that usually don’t give us the results we crave.

Grief is huge because CFS causes so much loss. Grief is not just for those who have lost a loved one. Any kind of loss can cause grief. In CFS, some typical losses include loss of our job (I was unable to work for five years), friendships, identity – the person we used to be, hobbies – things we enjoy, our independence – ability to do things for ourselves and come and go as we please, our dignity, losses to relationships – we can’t join in family and friend activities like we used to for example, so there’s much grief from missing out. There’s often the loss of our ability to care for ourselves. And so much more. It feels like watching your friends and family getting on with their lives and doing cool things while your life is at a standstill. This is incredibly hard. It’s normal to grieve the things that CFS took from us.

Because of all this, having CFS can also leave us with a great deal of long-term trauma. Even when we recover physically, it can take much longer to recover emotionally and mentally. The reality is, we will carry these scars for the rest of our lives.

There is so much more I can say but I will leave it there because I am concious of the fact that those of you with CFS can’t read for long.

I write because I want you to feel seen and understood and supported. I hope you can see that I do understand what it’s like because I have lived it. I want you to know that you’re not alone, and that there is hope.

I know recovery stories can come with complicated feelings when you’re so sick, but I am living proof that it IS possible to recover from Chronic Fatigue Syndrome. And I am definitely not the only one. This cruel suffering doesn’t have to be forever.

This is why I created a three month CFS Recovery Coaching Program using the things I learnt from my own recovery and the things that helped me. You don’t have to do this alone. If you would like ongoing support and accountability in your recovery, you can book a FREE 15 minute discovery call with me (Cait) here.

I’m thinking of you as we enter CFS Awareness Week.

Courage and Hope,

Cait xx