Claire Wade
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Pretending to be someone I'm not.

16/7/2012

 
If you asked me recently if I had accepted my illness I would have said yes, absolutely. I've been ill for nineteen years; of course I've accepted my illness. I've adapted my way of life, I use a wheelchair to go out, I rest, I listen to my body, I do all the things I'm "meant" to do, of course I've accepted being ill.

The truth is, that's not completely true, because even now, nineteen years on, I am still pretending to be something I'm not. I'm pretending I'm "normal" just like everyone else.

I do it because I don't want people to think I'm "different" because "different" is weird, it's wrong; it means I won't fit in anywhere or with anyone. Right? I mean that's what we're told every single day, that we must be just like everybody else and if we're not then we're failing. Failing at what we do, failing at who we are, failing at life.

I work hard to seem fine, to seem just like everybody else. Not just for other people, friends, contacts, and strangers; but for me. I pretend for me too. I tell myself I'm better than I am, that I can do more than I can and I ignore the things I can't.

When I sleep during the afternoon I get Mum to tell people who call that I'm in a meeting or I'm out. When people talk about working forty hour weeks I nod and agree; but I never let on I can only manage a few hours a day because that sounds lazy, right? Like I'm not trying hard enough. At least it does to me. If friends are meeting up at eight o'clock or later then I make an excuse because I know by that time of night I'll be shattered and not up to being sociable and when I go places I have to get a lift from my Mum. She has to wait for me and pick me up and that makes me feel like a child. In so many ways I still feel like I am, like I've never got the chance to find my independence because I've never been well enough to be independent.

I know I've felt like a failure for being ill, for not getting better, for not living the life I wanted, the one I planned for. You know the one - school, university, career, husband, house, kids. That's the standard and that's all I ever wanted. Normal was enough for me and it's still all that I want.

The thing is none of those things are impossible, I know people who are ill and have done all of those things, there are ways to have that life; but for them to happen, for me at least, I feel like I need to accept one big thing. I am ill.

There I've said it, I'm ill and while there is hope that I might get better on my own or they might find a treatment or cure, right now I'm ill and there is very little I can do about it. I'm not saying this in a depressed way, although saying it is incredibly painful, I'm stating it as a fact, one that I really need to hear. Nineteen years and you think I'd have accepted it, not just on a logical level; but an emotional one too. I haven't and I'm so tired of pretending otherwise.

That's part of the reason for starting up Live in Love in Laugh in because I'm so sick of waiting to be well enough to go out, to have lots of "real world" friends and a "normal" social life. I'm sick of waiting for my life to begin. Don't get me wrong I have been doing some amazing, fun, exciting things; but they tend to be the big events, it's the everyday things I feel like I'm missing out on. Having a chat with a friend, meeting up for a drink, going to the cinema. As well as a few big things, like girlie weekends away, or a holiday somewhere exotic. I keep waiting to be well enough for them to happen and they don't, so I lock up the disappointment and the sadness, I pretend it doesn't exist; but it does.

Live in Love in Laugh in is about living now, finding ways to live the best life I and we can, doing it together.  I can't have the best life now though, if my heart is aching for the life that I imagine, because it's a fantasy and I'd much rather live in reality, not waste another moment.

I'm learning as I go, in no way am I an expert; but I know that there are so many people out there that feel the same, for whatever reason and I just know that together we can find ways to create better lives for ourselves.

How do you accept the things in your life that you can't change? What helps you to cope? I'd love to hear your thoughts.

Claire Wade is the winner of the Good Housekeeping Novel Competition and author of The Choice. She was bed bound for six years with severe ME, trapped in a body that wouldn't do what she wanted. She now writes about people who want to break free from the constraints of their lives, a subject she's deeply familiar with.
Donna link
16/7/2012 02:28:40 am

Claire there is a way out. The optimum health clinic techniques are fantastic. i am using them and i know they will get me completely better.i've had a lot os stress these last 7 months..but i feel once that has gone and i keep using the techniques i will get 100% better.
u can change yr illness,,the techniques take a while to bed in and for u/me to do them..its a ew way of thinking and being more relaxed.i am focussing hard on them..i now have the motivation since my dad died and everything around me is in chaos.put yr all into the techniques..at least try like me..u r so talented..u will get everything u want. lok at their website.best wishes.

Claire link
16/7/2012 05:54:58 pm

Hi Donna,

Thank you for your comment, I'd be really interested to hear how you get on with the Optimum Health Clinic as I've heard of it; but only known one person who's been. I was using the CDs a while ago; but have been trying some different ones for relaxation which I'm enjoying.

donna hopkins link
16/7/2012 02:41:16 am

you r completely normal..u want what everyone wants. try on utube''guided meditation deep relaxation..howells' a brill alpha wave mediation that is amikng me feel amazing..abs so relaxing..i do it 2 or 3 times a day now. when u rest make it quality by using kelly howell mediatations on ther..try a bit of yoga..after about 10 mins into the med..then go back to the med.i find doing meditation/yoga takes me to a different place..u don't even notice its raining u forget all yr worries of the day/year/of all those 19 years.

i'm like u i try and hide..if i contact my local radio station i pretend i'm 'in the normal stream of things/life.
its good to do that.
to b part of that world
but don't ashamed of yrself/illness

one day i will talk on the radio about it.

Read the secret by rhonnda byrne..amazing positive thinking..love it.
Read the artists way by julia cameron..fantastic..she says ev day do the morning pages[stream of consiousness] for half hour.this allows to write out all yr frustrations..or anything that comes into yr mind..some days i just scribble jagged lines page after page..i think its frustration of the illness..u let it.then it allows u for the rst of the day to focus on other stuff with no negative thoughts whizzing round.

she recommends an artists day too which means doing something for fun just for yrself once a week for few hours.

highly recommend all.
for great flowing diff interesting type yoga by flowing yoga dvd by shiva rea..its is amazing..u do floor rolling and spinning on the spot as well to realise energy..and wow,

ps the howell meditation is great..i do it..i relax the back of my throat..which has always been tense..and i feel..tingle down my back.i then feel blood flow rigth to finger tips and down by back to my bum..then my legs r refreshed..feel blood flow there..its amazing..i'm making it part of my ev day routine.

good luck.

Claire link
16/7/2012 05:57:32 pm

Thank you for the suggestions, I watched The Secret a long time ago; but keep meaning to hunt out the DVD again and maybe get the book too. I've also wanted to do the Artists Way as well, which sounds great. I'm off to check out the meditation on YouTube - thank you!

Matthew Smith link
16/7/2012 02:50:02 am

Hi Claire, nice to see you blogging again and hope you can see this through all the spam. You seem pretty normal to me - normal people get ill and experience disability; you seem to have a lot of the same interests and likes as other young women and you seem pretty well-balanced (although I don't know you other than online) and quite a nice person. I think you're doing pretty well and you have a lot of good ideas and are able to bring them to fruition better than many abled people.

Claire link
16/7/2012 05:59:04 pm

Thank you Matthew that's very kind. I know that in general I'm normal, it's just when I get frustrated by the things that I want to do; but can;t that I start feeling different. It's good to remind myself I'm not that different though.

ME/CFS Self-help Guru link
16/7/2012 03:15:03 am

I believe that acceptance is the foundation for learning to live happily and as healthily as possible in the hear and now. So it seems that you've built that foundation now.

My sense of achievement comes from setting myself the challenge of doing the best for myself, both in terms of managing my illness to give myself the best possible chance of recovery and in terms of learning to experience joy in the here and now: learning that the little things can bring just as much happiness as the big things.

It doesn't matter that we can't do all the things that normally healthy people can do, if we can find happiness in the things that we do do. Focusing on how a good a flower really smells; having a laugh with a friend who understands what you're going through; learning to express your unique talents and personality in different low energy ways. Your blog seems great for this!

Good luck, you can be happy!

Claire link
16/7/2012 06:01:41 pm

You're right - I've found since being really ill that I do appreciate the small things, sometimes I feel almost child-like in the joy I take in something as simple as bubbles, the perfect flower, watching the birds in the garden. It definitely gives you greater awareness and more perspective on the beauty that surrounds you on a daily basis. Thank you for sharing your tips.

Heather Goodwin link
16/7/2012 08:01:29 am

Dear Claire, well done for the realisation and the positivity. I had the career, house, marriage (no kids by choice) and had the lot ripped away from me. That's hard, but not as hard as contemplating whether you'll ever have a chance at those things. Two observations: one is, before I lost them all, I never really *appreciated* all those things. I worked the 40-60 hour weeks (more often 60 than 40) and was so work-addicted I lost friends and relationships, and never took time to smell the roses or enjoy the day. I vividly remember a bout of insomnia while on holiday on hong kong. There I was in one oc the most amazing cities in the world perched on the loo at 2am crying about work stuff. My observation is, you may be more truly living your life as you are doing, with nigh highlights that you truly savour, than I ever was. The other thing is that people (hospital courses, CBT therapists and family especially) demand that we be 'the brave patient').

Heather Goodwin link
16/7/2012 08:08:13 am

Most of all, we put that pressure on ourselves. But here's the thing. The grief from what we've lost doesn't just dissipate or get channelled elsewhere. Sure, we can push it down or distract it for a while. But, for me anyway, it became like a living, breathing thing that was constantly threatening escape. After a while, I couldn't control it. I felt a bit silly going for counselling (person-centred, not CBT, which is hopelessly inadequate for grief). Through it, I've discovered a 'new normal'. MY normal. The relief is huge. Through it I have reorganised life to optimise MY normal. And the friends and colleagues I used to be embarrassed talking to also now see me more positively. I'm not apologising anymore for the reality of my life. Your post inspired me to share; i hope you dont mind. Big Love, Heather

Claire link
16/7/2012 06:07:05 pm

Dear Heather,

Thank you so, so much for sharing with me, I really appreciate the courage and bravery that must have taken and it is so reassuring to read your comments and know that I'm not alone.

I also went for counselling, ironically not because of my ME, that I seemed to cope with on my own, it was because of people around me that finally made me need to talk to someone. In the end a lot did come up about the ME; but it amazes me that stuff keeps coming up, you're right it isn't something which is just sorted and done with, it's ongoing.

Interestingly you're the second person today who has said that they live better now than they did before they were ill, that they appreciate life more and aren't pushing themselves to do too much and still not feeling like they are doing enough. I think that's one of my biggest issues I need to work out and to accept that what I can do in one day is enough for me and to be happy with it.

I think you're a star, thank you!

Claire x

Fiona
19/7/2012 10:26:16 am

There is so much in your post that resonates with me. I think I made a similar decision to you a few years ago and now I absolutely try to enjoy doing the things I can do now. Sometimes I get it a bit wrong and overdo it, but in general I work much harder to do little things like listen to the music I love, have long baths, do my gardening, watch great films, and to get maximum enjoyment out of them. It has helped a lot. Lots of luck with this website. It's great.


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    Claire Wade

    Claire Wade

    I'm an author, disability activist, winner of the Good Housekeeping First Novel Competition and The EABA for Fiction 2020 and founder of Authors with Disabilities and Chronic Illnesses (ADCI).


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