The Words I Wish I Had Heard When I Became Ill


Last year I lost my career to the much misunderstood illness, chronic fatigue syndrome. I was unable to get out of bed for three months. It took another six months to leave the house. While there was no shortage of well-meaning advice, I still felt alone and misunderstood, longing for someone to say something truly helpful. Finally, during Martha Beck’s writing course, “Write into Light,” I wrote the words I wish I had heard. Maybe, in the end, all we really need is for someone to be with us exactly as we are:

I am here.

I know you cannot believe what has happened. You didn’t deserve this.

Some people will tell you bad things happen to good people, that no one escapes the suffering. Others will tell you it is all an illusion, some cosmic game designed to wake you up and enlighten you. Right now, you feel that both perspectives are a crock of shit. Neither helps you in this moment, when the pain is so bad it affects your breathing, when you feel that you can’t go on.

I’ll be honest, I wanted to tell you that there is nothing wrong, that at some soul level, everything is unfolding as it must, that some part of you chose this. That is what I was going to say to you today, but the words stuck in my throat.

So, instead, I will hold your hand. I will make you tea. I will stroke your hair as you cry. I will listen to you as you tell me how life is for you right now.

I will not make you wrong for feeling as you feel. I will not try to impose my view of reality onto what I cannot know to be true for you.

I will not leave you alone in your pain. I will not present myself to you as someone who knows anything better than you. You are the authority on your own life. I am done with platitudes and promises of future bliss.

This is where life is happening, here I am in the pain, the snot and the disappointments. The broken heart is real, the pain in the body hurts, the grief of losing what you love tears you in two. I will not minimize this.

Can I just sit with you? Can I just love you exactly as you are?

That is all I have to offer you today.

Two people holding hands.

I cannot fix anything for you, it is not mine to fix. All my words are meaningless now. Perhaps, in your own time, you will find your own words, your own path. Perhaps, not. How could I know?

Today, this is my path: to be with you as you face this unexpected horror that has left you bereft. The only thing I know for sure is that I will no longer reject this moment, no matter what is arising. I will not reject your experience or mine. I will not overlay this present reality with words of encouragement, no matter how well intentioned. I will not tell you how to feel, how to live, how to heal.

I looked into my heart today, for the wisest words I could give to you.

All I found was “I am here.”

Follow this journey on Susan Telford.

We want to hear your story. Become a Mighty contributor here.

Thinkstock Image By: natalie_board


Find this story helpful? Share it with someone you care about.


Related to Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Test tubes in the holder in the laboratory

Researchers Find Evidence Chronic Fatigue Syndrome Is an Inflammatory Disease

A new study has found a link between chronic fatigue syndrome/myalgic encephalomyelitis (ME/CFS) and 17 markers of inflammation found in the blood — indicating that not only does the often-doubted condition have a real, biological basis, it may be diagnosable with a blood test. What the Research Says Using blood samples from 192 patients with ME/CFS [...]
woman taking a shower

How I Learned to See My Shower Seat as a Power Seat

Living with chronic fatigue syndrome as a teenager can be quite intimidating. As a means of trying to explain to my peers what it’s like, I often use the description of “It’s like having an old lady in my body but I just look like a teenager.” if(typeof(jQuery)=="function"){(function($){$.fn.fitVids=function(){}})(jQuery)}; jwplayer('jwplayer_Mg2luaFk_F962XJnx_div').setup( {"playlist":"https:\/\/content.jwplatform.com\/feeds\/Mg2luaFk.json","ph":2} );   This description seemed [...]
A record in front of record cases on a shelf.

How My Illness Relates to This Song From 'Mamma Mia!'

Having watched “Mamma Mia!” countless times with my daughter and being lucky enough to go to the show for my birthday, the song, “The Winner Takes It All,” blows me away every time I hear it. It’s so powerful, full of emotion, telling the story of what it’s like to be left behind, in the [...]
A tired college student sitting in a library trying to read.

The Hidden Struggle of Being Young and Chronically Ill

I’m a 19 year old university student in semester break. It’s a Saturday morning. I woke up dehydrated and nauseas, absolutely exhausted (I didn’t sleep until around 4 a.m.), sore and feeling foggy. I’m sure I’m not alone in this feeling – many other young university students will be waking up feeling ill after a [...]