My chronic career – Rachel’s story (ME)

‘My Chronic Career’ presents interviews with people who have chronic health problems focussing on not just their medical experience, but also the impact on their life and career.

Rachel Hawes from Cambridge UK and author of the Surburban Yogini blog has kindly agreed to be interviewed. Thanks Rachel! Rachel is a punk rock yogini, teacher, writer, massage therapist, sprinkler of fairy dust and lover of all things glitter, cake, kittehs, pugs and Dave Grohl and her story is below.

(Please come forward to be interviewed if you work and have a chronic health problem by contacting me)

Can you tell me a bit about your ME history?

I was first diagnosed with ME when I was in sixth form college (17-18 yrs old).  I was studying for three A Levels as well as Dance Foundation and suddenly I just couldn’t do anything anymore.  I was exhausted all the time, my whole body ached and I just seemed to get infection after infection.  I was skinny anyway but couldn’t put on any weight, could hardly eat and on prescription painkillers to see me through.

I got through my A Levels but instead of going off to university I went to stay on my Aunt’s farm in Tasmania to recover.  A year later, I’d beaten it.  Or so I thought.

Throughout university my health went up and down in peaks and troughs with frequent bouts of tonsillitis, throat and chest infections.  Nobody really knew what was wrong with me and I never really pursued it, happy at the time to deal with the symptoms rather than the cause.

It wasn’t really until I was living and working in London after university that I started to look into this all more deeply.  I completely crashed and burned in about 1999/2000 – I had constant headaches, ached all over and could not get to work on time for the life of me.  When I passed out on the tube I realised that I had been living in denial and the ME hadn’t actually gone anywhere.

I had a really sympathetic dr (in fact I have to be honest that is the only sympathetic doctor I have ever had when it comes to ME) who did the whole myriad of tests I’d had back in 1991 and then some.  Everything came back negative.  Instead of just dismissing me as some doctors had before, she advised me to rethink my work, to consider the lifestyle changes that had made me feel better last time and she put me in touch with an acupuncturist.

And how about your working life? What career path have you taken?

My main ambitions when I was at school were either to keep dancing or to study archaeology, but sadly my health problems put a stop to both of those.  After I came back from Australia I went to university and studied Ancient History – a nice desk based subject!

I waited tables for a couple of years after graduation which really didn’t do my health any good, before taking a secretarial course and starting a career as a legal PA.  I worked in various firms between 1998 and 2008 taking a career break in 2001 mainly due to health problems.  However I am a firm believer in never giving in to this illness and 2001 didn’t see me  feeling sorry for myself at home – I enrolled on a part time MA course.  By the time the course was over and I’d got my second degree my health had improved tenfold.

Sadly I still didn’t quite understand that what had made me better for the second time was changing my lifestyle.  In 2003 I went back to work for a big City Law firm in London.  It really shouldn’t have come as a surprise when my health suffered again!

Luckily this time I was in a really understanding firm.  I found myself being honest with them about my condition for the first time and they let me work shortened hours and occasionally from home.  Because of this I learned not only how lifestyle choices affect this condition of mine but also exactly the lifestyle I wanted to help me get out of working in offices altogether.

In 2005 I began my yoga teacher training part time whilst working.  In 2008 I rather tearfully left that great law firm who had been so supportive to go my own way.

These days I run my own business – I am a yoga teacher and massage therapist.  Most of my adult life I have found yoga and massage to be incredibly helpful to my condition and know others with other conditions have found the same. I want to be able to put back what I got out  and help people.

I have good days and bad days, hell I have bad weeks, but am able to work my hours around my condition – I work with my ME these days, not against it.  I see an osteopath regular, practice yoga and pilates, have regular massages and try my hardest to remember to put myself first.

Did you know about your condition before you were diagnosed?

Yuppie Flu, something that people who worked really hard in the City got.  Or worse, something that didn’t exist at all.  When I was first diagnosed it was 1991 and I was only 17.  There was no internet to research on, no blogs to read and most Dr’s didn’t really believe ME existed.

How did you find out further information about your condition when you were diagnosed?

I didn’t really.  I just blindly accepted what the Drs told me – at first at least.

Finding information is different now with the internet, which sites do you find useful in terms of information / support and advice about your condition?

I’ve never really used the internet as somewhere to research ME – by the time I started to use the internet I knew everything I wanted to know about the disease.  What I have found helpful is discovering through blogs and twitter the number of people out there with ME/CFS/FMS – being able to find out what works for other people, or just knowing you’re not the only one is incredibly helpful  and healing.

Thinking about working and having your condition – what do you find / have you found most difficult to manage / cope with in the world of work?

Working in a busy stressful office environment certainly. When I worked in law I was expected to work to a certain pace every day and for a  certain number of hours a week and I just couldn’t hack that regularity. As I mentioned my last firm before going self-employed was very understanding about this, but ultimately many employers don’t get that sometimes people with chronic conditions are well enough to work for a few hours productively and efficiently but not necessarily well enough to do a long commute into the office every day for example.

I have been made to feel tremendously guilty in office jobs for needing time off sick or shortened hours.  Guilty and resentful, which are not good feelings and only trigger more ME symptoms.

Working for myself I am able to dictate my own hours and as a last resort even cancel clients if my health tells me I have to.  I don’t have to answer to anyone else so I no longer have to feel guilty if I don’t live up to some precedent.  After all the only person who sets that precedent is me.

A lot of people with ME however aren’t lucky enough to be able to go self-employed and want to work, at least part time.  They shouldn’t be made to feel guilty about their condition.  If they are honest with their employers about what’s going on a good employer should help them out.  Sadly this isn’t always the case.

What is your top tip for employers – what could they do to support people with your condition?

Understand that your employee isn’t shirking off or skiving, they are genuinely unwell.  Perhaps make provision for them to go part-time or work one or two days from home (this is of course dependent on the job).  I know one person with ME who’s employers let him go for a nap in the sick bay if he needs to.

What is your top tip for employees with your condition?

Be honest.  The biggest mistake I made was trying to hide it.  Trying to cope on my own.   Also if your job makes you miserable, quit.  Or do what you can to make it better.  Being miserable in your work only exacerbates the feelings of despair that ME can bring.

When you have a flare up of symptoms – what is your ‘coping mechanism’?

Sleep + belly laughs

Do you think you have developed any personal skills or qualities as a result of having your condition? 

I’m brilliant at getting seats in crowded cafes – number 1 rule of having ME, always know you can find somewhere for a sit down and a cup of tea!

What advice would you give people who have just been diagnosed with your condition?

This is a really hard one to answer because it’s such a long time since I was diagnosed that I can’t remember my own reactions.  I will say this though – try to remember that it could have been so much worse.  When I was going through both my diagnoses  I had tests for some really scary things and I’m forever grateful they came back negative.

What advice would you give to the family and friends of someone who has just been diagnosed with your condition?

Be kind and don’t make a fuss.  Do some research of your own as if your family member is anything like me we really don’t like talking about it much!

And stick around.  I’m sorry to say I’ve lost a few friends over the years because of this illness, because they just don’t get that it’s not that I don’t want to go out all the time, but I have to prioritise things.  Find some lo-fi activities that your ME diagnosed friend can join in (popcorn and DVDs is always a winner here!)

Do you have a chronic health condition and a career? If so please come forward to be interviewed by contacting me!

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One response to “My chronic career – Rachel’s story (ME)

  1. I admire Rachel greatly and especially her willingness to share the ups and downs in such a public way, helping so many people, I am sure. 🙂

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