“How are you?”
This phrase has to be one of the most common in the English language. These three little words automatically slip out in everyday conversation, with the reflexive response being “I’m good!”. A large percentage of the time though, that response isn’t accurate. If you were to ask me this question today, my honest answer would be this: “I am tired.” If you knew that I was a university student, that may not seem like an odd response. You would assume I had stayed up late the night before studying (or partying). You might advise me to go to bed earlier, to drink coffee, to eat better, to exercise more. Only, what if none of these things would make a difference to my level of tiredness? What if I told you I have been chronically tired for 8+ years?
I have had Chronic Fatigue Syndrome (also known as Myalgic Encephalomyelitis) since I was fourteen years old. It developed with little warning. I went from being a healthy, highly active, exercise-loving high-achiever (i.e. major nerd) to overnight being unable to get out of bed. One day I was performing in a gymnastics competition; the next day, I awoke to pain in every part of my body and an overwhelming, all-consuming fatigue that left me completely bedridden for 6 months. I recovered somewhat for a period of time but then relapsed. I was unable to walk or stand up for more than a few minutes without collapsing, and so for a time had to be pushed around in a wheelchair. My body could no longer tolerate foods I had been eating my whole life. At times, my brain was so foggy I couldn’t read, or speak in complete sentences. I couldn’t breathe properly to play my flute, and could only sit upright to play piano for very short bursts. My head ached 24/7 and bright lights and sounds made me cry in pain. Developing CFS radically transformed the direction of my life and my everyday functioning. A lot of this part of my life is a blur.
CFS is a complex syndrome – there are a myriad of symptoms, which vary in intensity and impact. The fatigue itself is impossible to describe – it is not simply tiredness; it is an overwhelming heaviness, a feeling of utter exhaustion to the very core of your being. It feels suffocating and it is inescapable. Unlike normal tiredness, sleep is not the solution. For the CFS sufferer, sleep does not reduce fatigue – you wake up tired, every day. Not sleeping of course makes it worse, and ironically overexertion (being ‘overtired’) often leads to insomnia. The fatigue is accompanied by chronic pain and inflammation in the joints and muscles. Everything hurts, all the time. Physical exertion (inc. walking and standing for long periods of time) leads to abnormally high levels of exhaustion that is not improved by rest and can last for hours (or days). The immune system has been compromised and thus people with CFS do not have the defense system to fight off common viruses – so you get sick, a lot! It is not just physiological – fatigue affects your ability to concentrate, think and process things. (There are numerous other symptoms, see links below.)
Though it affects approx. 2% of the population, CFS is still largely a mystery. There is no known cause, no medication for the treatment of it and no cure. The duration and severity of CFS varies between sufferers and can fluctuate dramatically over periods of time. Despite seeing every type of medical professional under the sun, to this day we have not been able to pinpoint why I developed CFS, or why it has persisted for so long. Over the past few years, my capacity has slowly increased, and while I still experience fatigue and pain on a daily basis and it fluctuates in severity, with each year I continue to improve. It has been a long journey, but I am finally studying at university – a reality that still surprises me every day when I reflect on where I’ve come from. While I am only able to study part time, it is still HUGE to be able to manage the travel and study. I have a job, though have had to take this semester off to allow my body to readjust. I can drive short distances. I am involved in ministry in my church. I’ve gone from not being able to walk down the street to sometimes being able to go for short runs, when my health is good. CFS is unpredictable, and there are seasons where my capacity is diminished, but I am thankful for every day of my life and for the incredible healing God has worked in my body.
One of the frustrating realities of living with a chronic illness like CFS is how hard it is for those who haven’t experienced it (or lived with a friend/family member who suffers from it) to understand. It is an ‘invisible illness’ – from the outside, I look perfectly healthy. The statement “looks can be deceiving” is so very true of a CFS sufferer. Only those who know me very well can tell the difference between me on a ‘good’ day and me on a ‘bad’ day (apparently it shows in my eyes). My limbs aren’t broken, my speech isn’t impaired, there’s no rash or scar to indicate that I am unwell. When I am at my very worst, I am in bed – so the true reality of my illness is not seen. I don’t like to admit that I am weak, and I usually try to hide how I am really feeling. Chronic fatigue is highly misunderstood – you can’t just “push through it”, you just have to manage it. I do everything in my power to embrace the limited energy and strength I do have so that I can live as ‘normal’ a life as possible. Going out, studying at uni, exercising – these all come with a cost, but I try to experience every moment fully, to not take for granted the capacity God has given me to enjoy the life He has blessed me with.
While I am not where I thought I would be at 22, I can truly say that I am thankful for the life I have lived and for all that I have experienced. In the midst of suffering, I have learnt to trust in God’s sovereignty over my life. He has humbled me and shown me that in my weakness, His grace is sufficient. On the days when the pain and fatigue are overwhelming, I can rejoice in the knowledge that I have been brought from death to life through the love of Christ who suffered and died in order to bring me to salvation. Nothing can separate me from God’s love, and that truth sustains me every day. I know that I stand before Him, forgiven and justified, and any suffering I experience in this life is far outweighed by the glory of eternal life in His presence. I look forward to a day when pain and suffering will be no more; but while it is a reality in this life, I still have reason to rejoice and praise Him, every day.
So, my honest answer to the question, “how are you”?:
I am tired. And I am in pain. But I am here and God is good.
Some helpful links to more information about CFS: