An open letter to my friends: how do you see me now?

Today I read this article on the ‘Queen of Constance’ blog – a popular blog written by an outspoken mum of four kids, with posts that are consistently being shared by my Facebook friends. Yesterday Constance handed over the reigns to her friend Penny Shipway, who wrote a letter to those affected by their friend’s chronic pain. She says,

Those days where every bill has come at once; your son won’t stop wetting his bed; you’re still waking six times to an almost two-year-old; and the house looks like worse than a burglar ransacking.

But you have chronic pain.

And you actually do have all those things but with a head that feels like it’s going to explode like a watermelon falling from the top of the Empire State Building right there in front on your daughter’s teacher if you don’t get back home to take some more painkillers and collapse on your kitchen tiles, where you tell your young children to “f*ck off” feeling incredibly guilty, then cuddling them as soon as your meds kick in.

The post got me thinking. What would my open letter say? What would I want my friends (and all of you) to know about living and coping with chronic pain? Here goes…

Loving the Prisma app and think this perfectly sums up my feelings about this post.

What do you see when you look at me? Is it the strong, vocal, independent woman I try to be, or is it someone else? Someone weak, crippled and reliant on others. God I hope not.

I tell you I’m fine, and I am. I really am. But chronic pain… it does something to you. Something aside from the uncomfortable spasms, the pins and needles, the stabbing pains and dull aches. All of that, sore as it makes me, is bearable. I don’t need to talk about it. I’m fine. I can curl up on the sofa in my pyjamas, I can deal with the numerous doctors appointments, and I can make the judgement call about when to rest and when to keep moving. When it comes to the pain, I’ve got it covered.

But do you know about everything that comes along with the pain? Do I hide it well? I doubt it; I’ve seen me after a few wines. I overshare and if you catch me on a really bad day, you’ll see me cry. Those tears are rarely tears of pain, they’re tears of frustration and exhaustion. So what is it that I struggle with? It’s this:

It’s the fear that nags at me before events, knowing I might have to leave early or may not cope at all, and the sadness when that fear becomes a reality. It’s the worry I’m letting people down by not going, but letting myself down if I do.

It’s the utter anger I feel at myself every time I do something that leaves me vomiting on the pavement or in bed for days afterwards, and the contrasting unbelievable elation that I feel when I do something that doesn’t leave me ill. It’s like I controlled it, it’s like I won.

It’s the cognitive dysfunction that leaves me with an inability to string a coherent sentence together, remember a name or recall a story accurately, like I’m watching someone else’s life through clouded windows and I can’t quite see things clearly.

But it’s the fear that I’m boring now; the worry that fun things are painful and boring things are safe and that’s just the way it is.

Above everything, it’s wondering if you see me differently now. And hoping that you don’t.


13 comments on “An open letter to my friends: how do you see me now?

  1. Thank you so much for this post – it’s brilliant, wise and perfectly describes how I feel, too. Thank you, again.

  2. KindasFolk

    Gah… Yes. An open letter to my husband. All he wants is for me to feel good. And all I want is for him to see me as normal. Thanks for your candor. Your eloquence is spot on.

  3. I only have a couple of friends still around from the old days and it is as hard for them as it is for me some days. Yet, my new friends just see me as me – the new me.

  4. Reblogged this on and commented:
    I can relate to this on many levels. It is definitely worth a read!

  5. Wow, you nailed it. I can relate to every word, unfortunately.

  6. Thank you for this post! So true. I think we suffer from different types of chronic pain but I can relate. Especially the part about going to an event and worrying you’ll have to leave early or be uncomfortable. I totally understand, I worry about this too. My husband sometimes says I’m setting myself up to fail by having contingency plans but I know I won’t feel safe without these safety nets. Chronic illness is not for the weak. You are strong and, I guess, maybe I am too. Let’s keep writing and maybe we can raise public awareness to some degree😊 Hugs.

    • You most definitely are strong too! Thanks so much for commenting, and you’re absolutely right – those contingency plans make me feel safe too. Safe, and in control. Hugs to you too x

  7. Pingback: 5 ways to cope with chronic pain – A LIFE LESS PHYSICAL

Leave a Reply to A Life Less Physical Cancel reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s

%d bloggers like this: