Having two lives, one of which you do not want other’s to know about. The life that everyone believes is your “true” life is one of complacency and subtlety, one in which the person is generally unassuming. However, in the second, “secret” life, the true essence of the person is displayed, and is generally only revealed to close family and friends.

I am leading a double life.

Each morning I get up, my make up goes on and I leave the house to do the school run.  I make small talk in the playground with friends.  Go to coffee once a week with a group of mums.  I smile, I am interested in their lives.

It’s important to me that I’m a good mum, friend, sister, daughter.  My house is usually clean and tidy, dinner cooked, (all fresh and gluten free), the bills are paid, we have a decent car.  From the outside it all looks good.

What people don’t always know is I have a secret.

My funny, bright, handsome teen is sick.  This year he was diagnosed with myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) in addition to hypermobile Ehlers-Danlos syndrome (hEDS) and most likely postural orthostatic tachycardia syndrome (POTS).

It’s a year since this condition really stole his world, and flipped mine upside down.

Behind my smile, make up and the plumped cushions on the sofa I’m often drowning.  Like a swan I appear to be gliding on the surface but in reality I’m frantically paddling against a relentless tide to keep afloat.

This week I met my friends at the usual coffee shop after the school run on Friday morning.  As they chatted about their lives and shared their news, I felt like I was living in some sort of parallel universe.  Usually this is my little escape from the real world but just lately it’s like I don’t recognise their lives at all, it’s like I don’t belong.  I try to smile in the right places and to be interested, just to cling on to some sort of normality.

My secret is drawing me further and further from the real world.

On a good day when he wakes by himself before noon and manages to work with his tutors for an hour without resting, I’m elated and feel myself slip back into my former life a little, like putting on a pair of old comfortable shoes.  Only to find those shoes start to nip again as the good day quickly passes and the panic about his health, education, social interaction and his future begin consume me again.

I want my friends to get it, I want the world to know what it feels like to be a parent of a kid whose life gets smaller and smaller every day.  Sometimes I can see in their eyes that they really want to understand but they don’t have the words and I often haven’t got the energy left to help them to truly step into my shoes.

I quickly revert to my default setting – humour and small talk, just so I don’t have to try.

I know I can not live in this state of unrest long-term that I will have to learn to accept our new normal.  As more people understand what this illness is and what it strips from a family I hope that my real life and my double life will begin to merge a little so that I can feel whole again.

Until then I will try my utmost to be a good mum, friend, sister and daughter and pretend that it’s alright.  To try to have a little control over the simple things in a world where I have no control.  To be there, present, always.  To be mum.

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12 Comments

  1. Hey, I understand. I have all three things your son does, and I completely get the feeling of it taking you away from the rest of the world. I just don’t understand other people my age. I am thankful for my few friends who either try to understand or understand completely because they are sick themselves. ME/CFS is so hard, and I am so sorry your son is struggling. Thank you for sharing this and making everyone feel less alone! <3

    • Sarah Wells Reply

      My son is only 14 now but he has realised that lots of the relationships that he had before he was so sick were superficial. He hasn’t got the time or energy for people like that in his life, not a bad conclusion to come to so early on!! Thanks for taking the time to comment, it means a lot. S x

  2. You’ve just explained my life in a nutshell. Thankyou for making me feel a little less lonely.

  3. Oh Sarah – I am there with you holding your hand (will be one day as we are not so far away). None of mine are as sick as yours, but as mums we can never stop worrying my migraine EDS lad has gone off to uni and I know he is drinking with his meds….but what can I do?!. At least he is there. Despite our own chronic health i think that we would take on more if it meant the kids were all well and thriving. We went to a dinner party recently which was a huge thing for me as the POTS was awful. But my friend had cooked gluten free so I wanted to go and like you as the evening went on and they chatted about foreign holidays and going cycling, both hubby & I felt increasingly out of their world. Were we ever really in it, despite the lipstick and powder and appearances at the school play? I think of your young man often – he is the same age as my girl – and hope for respite for all our kids, much love xxx

    • Sarah Wells Reply

      Its crap isn’t it?!? I would definately take it all away for them. TBH I think dealing with it myself is much easier than being powerless to their struggles. Right now I’m surrounding myself with my tribe and it’s working, my head is in a much better place than when I wrote this post. I’m in fight mode again and it feels good. I know will be able to put my hand on my heart and say that I have done everything humanly possible to get the best for them all 🙂 Hopefully it all works out. Failing that I may have to steal a magic wand. XXX

    • Sarah Wells Reply

      You are welcome, I appreciate you taking the time to comment Johnna xx

  4. Selina Hargreaves Reply

    Thank-you for your story as it mirrors mine. My 15 year old daughter had had CFS and POTS for 1.5 years now, and she has also just been diagnosed with Osteopenia. I also have a son whom is healthy, so I too do the school run then go off to work full time. Sometimes I stay home for the teacher & physio, and other times my partner does. My daughter is gluten, egg & citrus free, is on Melatonin tablets to help her sleep, and she is in bed all day, every day. It’s a complicated and stressful life, that you slowly get used to as the new ‘normal’, but you feel like you’re constantly juggling everything. I hope one day our children will get better and become their happy, energetic selves again 😀. Take care.

    • Sarah Wells Reply

      Selina, thank you, thank you, thank you. It is complicated and stresful! This summer my positive self booked a holiday for next year (our first abroad in 15 years) by Christmas I think my realistic self will probably be cancelling it before it costs us any more money 🙁 Love to you all xxx

  5. This is a powerful piece…I can sense the exhaustion in it, and also the strength and love. Sending you hugs today, and I hope for things to look up for you sooner rather than later.

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