Holding The Pieces

I have been diagnosed of having Myalgic encephalomyelitis (ME) which is a medical name for Chronic Fatigue Syndrome. It took over a year and few months and seeing several doctors/ specialists to get this diagnosis.

During this period, I have been suffering from continuous unexplained fatigue and pain. Analysis, lab tests and all kinds of testing couldn’t give any explanation of the condition.

Every doctor I’ve seen, sees my tests results, prescribes some more and then says that it looks like I am in a very good health and nothing that they can diagnose. They prescribed all kind of supplements and vitamins that I tried over and over. I personally experimented on myself: exercise, meditation, stretching, changing my diet, …

I try to describe my pain, explain, articulate but I lack words that can convey what it feels like. The symptoms I feel become unreal, because they don’t reveal themselves in my tests results. They also seem unrealistic because they don’t “show” anywhere in my body or behavior.

I have been avoiding talking about it to others, even those close to me, because what am I going to say? I am tired? Aren’t we all?

If your pain isn’t explained by a specific disease, it can’t be seen. When I tried expressing, I heard of kind of advices: try vitamins, sports, sleep, rest, take a vacation, walk… How can I explain that I tried all these and that it was a journey of adapting and changing and alternating and that the effort itself to try all these is exhausting; adding to it that they all fail to help and, sometimes they worsen my condition.

To wake up every day in pain, feel it throughout that day while trying to hold your life, and go to bed with it, to feel it every minute of every day over and over again… trying to keep every piece of your life and not lose any of the parts you loved while feeling this pain… telling yourself that the pain isn’t the acute pain, it is bearable, you still can live with it; but, this continuity can be suffocating. Pain is frustrating, handling yourself while feeling it, learning to deal with the world outside “normally” while your inside body “isn’t normal”. It might not be the most horrible pain in the world, but it is terrifying because it does not go away, it is there, becomes a part of who you are, shaping your life and, maybe, your identity also. Do we adapt with pain at any point? Does it become “just there”?

A fatigue that does not go away with rest or sleep. Restless Sleep is one of the symptoms of this condition, said the doctor when I told her I wake up very tired even after a night of sleep.

“You’re still young, why are you tired?” I hear an alternation of this sentence over and over, and don’t know what to reply. I keep smiling, to others, to myself, to all this non understandable situation.

But at the darkest moments of pain and dealing with this alone I feel terrified. Not of the pain itself, but of it being my companion for the rest of my life. I haven’t known one day without pain since more than a year, and my deepest fear is not knowing again, forever, the “absence of pain” feeling. I miss the feeling of “rest” and in some rare moments when I feel refreshed, for seconds, I try to grasp it and hold it. I deteriorate quicker than I can even get the feeling inside me. Incorporated Body and mental fatigue that can stop me from doing my activities or work, that I also resist, to be able to go on with a “normal” life.

I push myself to continue doing my work, all of it, in the same timeframe as before. Because I want to believe I am still “completely functional”.

Initially, I tend to be introverted; with this illness, every social encounter or gathering becomes an effort to make. Talking, sitting, focusing, and interacting all seem like tasks that require lots of efforts and support. others will probably be compassionate and say: “We could postpone our meeting if you are tired”. But will a come time when I am not? Efforts will exhaust my body and brain, but not doing them will drain me emotionally and mentally and throw me into hard moments of psychological suffering and fear. How can you explain that?

I now think about what haven’t crossed my mind before when I was in full form. Every feeling becomes different when you live it immersed in pain and fatigue: happy and in physical pain, excited and physically tired, sad and in physical pain, in love and physically tired, heartbroken and in physical pain, … nothing feels the same. I have learned to give different meanings to a lot of words in my daily life: success, care, closeness, failure, habit, effort, smile, calm, cry, intimacy, anxiety, loneliness, all lived through and with layers of fatigue and pain.

This illness is chronic and does not have a treatment, so far. Because also, they still don’t have an exact explanation for it. There are some sort of possible reasons.

The above was my personal experience, the following, is me trying to understand. But it is not in any way scientific or necessarily logic. It is just an attempt, to explain what medicine is not able to do, so far.

The disease is not at all a result of a continuous exhaustion of the body, at least this is not one of the listed reasons.

This condition can happen to anyone at any age, but seems to be affecting mostly women, at middle age. Among the major risk factors of the disease is “being a female” and “bodily response to severe stress”.

The fatigue/pain of this disease starts suddenly at some point but it is believed to be triggered or initiated either by a previous “viral infection” or by a traumatizing experience/ an emotional shock. I wonder when I read this if women lack any of the reasons to be the most affected by it. At middle age, women have been already through a huge deal of emotional distress and traumas. A traumatizing experience is a risk that they encounter every day, with a partner, in the streets, at work…

ME/CFS can also start after pregnancy’s (again, women?).

There are also cases where it comes gradually due to continuous sleep disrupts (again, thinking women waking up for children over and over at nights) and extreme stress condition (stress is the main product of this system we live within).

What are the bodies trying to say? What is expressed through pain because, maybe, it wasn’t channeled in other ways?

Women handle a lot of pain without nagging, I wonder if a lot of them are suffering from this and don’t say or can’t find a diagnosis. Some estimations say that around 90% of people suffering from this illness aren’t diagnosed. This means that a lot of us, are a mass of pain walking and trying to hold our lives together. While trying to see what other people having the disease say about their journey, most of them said it took years until they got diagnosis, mostly because women are told they exaggerate their pains. Until they get a diagnosis, lots of them have reached a point where they are already bedbound.

One patient says, the CFS is the modern day Hysteria for medical institutions.

So I wonder, if attributing the disease to psychological reasons (which might be true), but also might be a way to do less of a research on the biological reasons and consequently the potential cure.

This also might be the result of a modern life that human body is not adapted to. Dietary systems in the last few decades dictated by big corporation, feeding bodies with refined carbs and sugar. Those weren’t what humans ate for centuries before, neither what human body has evolved for. Also, the invention of lamps, and after it screens and mobile phones that facilitated our lives but also got our brains into different sleep modes than what we’re used to when we knew night hours as only “dark”. More people suffer today from disrupted sleep and insomnia leading also to these types of diseases.

All this might be true, and none of it also at the same time.  It is all speculations and hypothesis but the medical institutions and research centers, worldwide, haven’t given enough effort, time and fund to explore more and find some answers. Over this period, I felt like I needed to know. I needed an explanation for my condition. Whatever it is, it helps me through the process of adapting and maybe, healing.

I have no idea why I am sharing this. I kind of felt guilty over a long period, expressing this as a suffering while I know the crisis we’ve been through in the last years haven’t left anybody without some form of pain. Adding to it that it took me personally a long time to understand the illness, and I can see why others can’t understand what I am going through and that’s ok. I went through a long journey of accepting and adapting and I know came to learn, how to deal with this somehow.

I am writing just to reflect on medical diagnosis, on our perception of pain and on what might this oppressive system be doing to us. I am writing also, to normalize expressing pains, even unexplainable ones.