I Know How You Feel

Journal Entry, 2007:
As someone living with chronic illness, there are few things I hate more than that seemingly innocuous phrase “I know how you feel”.

While experiencing minor illness such as coughs or colds, otherwise healthy friends have sometimes remarked that they now know exactly how I must feel, as though two days on the sofa watching daytime television somehow gives a unique insight into my world.

There are several major flaws to this logic, not least, the very fact that they are able to make it to the sofa to watch TV at all (or get to the bathroom, or make tea and toast and refresh their hot water bottle) places their ailment in an entirely different league to my own.

The fact their illness is measured in days not decades precludes any comprehension of what it is to watch their entire world torn irreparably apart and be powerless to stop it.

However ill they are, it is too brief to steal the memory of what healthy feels like, yet the very fact we all know how miserable it is to have a cold brings a modicum of sympathy from others and grudging permission to grumble, at least for a little while. No one with a cold is expected to be brave and uncomplaining all of the time and in the context of a cold the phrase ‘in your head’ takes on a very different meaning.

How could a cold make you understand what it is to wake up paralysed and blind, to not recognise faces of the people you love, to suffer seizures and falls yet be unable to call for help?

What symptom of a cold can mimic pain that even morphine cannot touch, or the exhaustion of a body contorted and wracked for hours with uncontrollable spasms and the injuries that inevitably result?

When did a cold leave a healthy adult fearing for their life, fighting to survive from one day to the next?

How can a cold convey the burden of learning that you may never lead a normal life or know what it is to be healthy again?

Do they know what it is to be as dependent on others as the smallest child, or the indignity of losing their most basic abilities and choices?

Do they know what it is to have no identity? To lose all value in the eyes of the world because the achievements that gave them worth mean nothing if they cannot be maintained?

Have they been denied the chance of a career; of a partner and kids? Have they lived with the fear that for them, these things may be nothing more than an impossible dream?

Do they watch, day in day out, as other people take for granted the life they ought to have had; complaining about things they would happily give up limbs for?

Have they been forced to watch as one by one most of their friends either turned away or raced too far ahead to hear them call?

Do they know what it is to see their former self recede beyond reach or return leaving a stranger in its place?

When did they last realise that they would willingly trade lives with almost anyone?

How can a mere cold teach them these things, when all the while their job, their life, their friends are waiting untouched on the other side?

In a couple of weeks they will have forgotten their illness just as they will have forgotten about me, as once again they re-join the race, too far ahead to hear me call. Their ailment was merely the smallest glitch in an otherwise perfectly ordinary life.

So the next time you have a cough or a cold, and you’re sat on the sofa watching daytime TV, please think twice before telling me that you know how I feel; because some days I really wish you could, but thank God that you don’t.

This entry was posted in Hidden Disability, Myalgic Encephalomyelitis (ME) and tagged , , , , , , , , , , , . Bookmark the permalink.

8 Responses to I Know How You Feel

  1. quiall says:

    that was said to me many years ago by someone and I politely said that in that case they wouldn’t mind changing places with me. That stop them. They did apologise.

  2. I hear your frustration and I think comments like these can be abolished with more awareness and understanding of chronic illnesses. When I was first grappling with ME a friend once said “I had a late night on the town last night, I know how you feel”, o my gosh, I had so many mixed emotions over this statement. First off, a night on the town, how much fun would that be? And of course the comparing a sore head from alcohol and a tired body to me and my headaches, nausea and exhaustion, all of which occur because they do, not because I could enjoy a night out with friends. I had to bite my tongue and whether it was conscious or not I started informing friends, putting links on facebook, sharing my days with them, informing, informing, informing. Now, a year and a half on I am so proud, they pass remarks as to the various links they read or other research they did on the back of my posting a comment. No one compares me to a night out on the town now! I dont want sympathy but love empathy and of course understanding, everyone wants to be understood. Its blogs like yours that help this process. Where people can read first hand just what it is like to live a day in your shoes. We as patients, while our paths are different, we can use our own tools to help grow understanding. I often view my process of informing as “well, if a friend was to have someone close to them diagnosed with ME in the morning or another chronic illness, they now have the understanding and awareness to help them out”. Imagine a blog like yours having such power. Words are powerful. xx

  3. Peter says:

    I hear what you’re saying, Sarah: it must be infuriating and hurtful when people glibly say “I know how you feel” . But on behalf of all those who so easily put their foot in their mouths and say the wrong thing, can I try and mount a small defence ? It can be incredibly hard to know what to say when you meet a friend, loved one who’s going through something you just can’t comprehend. For example I find it hard to know what to say whenever I meet a friend who’s lost a loved one. This week I’m meeting up with a good friend who’s wife suddenly and tragically died last month. I have no idea what to say, and I certainly hope I don’t say “I know how you feel”, but I hope he’ll see that despite what ever clumsy, trite thing I might come out with, I do care and want to know that in some way I want to”weep with those who weep”. Those of us who are often awkward and shy may often say the wrong thing (would it be better to say “I don’t know how you feel”?) but it’s not always because we lack compassion, just we don’t know how to express it. We also need mercy and forgiveness.

  4. saxoma says:

    Dear Sarah My heart (and prayers) go out to you. Have you tried writing about anything else other than your illness – it doesn’t define you however bad you are feeling. You are a child of God and precious in his eyes (and lots of people too). You are so much more than the sum total of all your illnesses from when you were born to now. I wish I could help. Serena XX

    • You are right that my illness doesn’t define me and I write about other subjects in other places but the purpose of this particular blog is to talk about issues regarding chronic illness and provide a space where other people can share their own experiences. This doesn’t mean that thoughts of illness occupy all my time outside of this blog. Part of the reason for writing about my illness is to get rid of the unspoken thoughts that I don’t get to discuss anywhere else so I am free to focus the rest of my time and energy on more positive things. What you are reading here represents more than ten years of writing all gathered into one place and many of these posts describe circumstances I have faced in the past rather than how things are right now. This post for example describes what I was thinking and feeling six years ago. Things are very different now but other people may be still be experiencing what I experienced then and hearing that they are not the only one to have thought about these things may be helpful for them.

  5. luckierthanmost says:

    I hear you.

  6. ABE says:

    “However ill they are, it is too brief to steal the memory of what healthy feels like”

    expresses it perfectly. I tried to use those occasions when someone has had the flu and is feeling like death to give them a tiny taste of what it is like – until I realized that at that moment they are so focused on how bad THEY feel that they are basically unreachable.

    It isn’t worth the time.

    The blogging – that IS worth the time.

  7. cyleste says:


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