What’s it like to live with ME/CFS?

Has anyone ever asked you what it’s like to live with ME/CFS?

Most people think you’re just ‘tired’ or ‘anxious’. Just like the HR person in charge of disability claims at my workplace said to me, “I don’t want you to get anxious about this or you’re going to have a relapse.”

Since she deals with claimants on a daily basis I assumed she would be cognizant of the particular challenges of their illnesses. Perhaps she is, but she doesn’t seem to know much about mine.

She, like many others, has this preconceived idea of what it means to have what most people refer to as chronic fatigue. They just think it’s about “being tired all the time” or “getting stressed or anxious”.

Unfortunately, the reality is that most people don’t know very much about Myalgic Encephalomyelitis or Chronic Fatigue Syndrome, and they don’t take the time to find out. They have their own lives to live. I get that. But those whose job it is to help navigate you through the roadblocks should at least make a concerted effort to be better informed about it or ask you how you’re coping.

During the first few years of my illness, people regularly asked me how I was. It’s old news now, but it’s still relevant to me! They believe since I’m not going to die- at least not anytime soon- I must be fine. And they avoid the subject altogether now.

Once in a while someone may ask a seemingly unimportant question, until they realize they’ve just stumbled into a minefield- and then you get this peculiar stare from them. For example, someone asked me why I don’t do Taekwondo with my children and husband. She probably assumed it’s because I don’t like the sport or don’t do sports. So when I explained the reason why I cannot do any sport I got the ‘stare’ that said it all.

Some people actually think you’re a malingerer or even lazy. They don’t understand, and don’t know that if you have ME/CFS you cannot take part in any cardiovascular exercise. People with ME/CFS have an extremely low anaerobic threshold. Severe sufferers can’t even go out for walks. A short walk for them can be similar to the effects of a healthy person running a marathon.

Most people are usually polite and say something like, “Oh yeah, my cousin’s friend has that disease and can’t do very much.” But then they add, “Well you look alright. You must be one of the lucky ones.”

Looks can be deceiving, as we all know. People with this illness can actually ‘look’ healthy but feel miserable. That’s one of the ironies of having ME/CFS. Most people cannot ‘see’ how you are feeling; only those really close to you can tell. Only they recognize that when the sparkle in your eyes fades you are feeling abysmally dreadful.

In the end, the people that take the time to ask you how you are feeling on a regular basis are those who really care about you, those who really count.

I’m very fortunate to be surrounded by many such people. I hope you are too.

One of my all-time favourite songs and bands…

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This entry was posted in Personal, Raising Awareness, Respect, What is ME/CFS and tagged , , . Bookmark the permalink.

2 Responses to What’s it like to live with ME/CFS?

  1. Valerie Free says:

    Thanks Fatima,
    Really well written and explanatory. I was thinking about you today. Hope you are doing okay. Why don’t we connect sometime?

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