A fantastic article I wanted to share

‘Every part of my body hurt’

After years of pain and fatigue, novelist Hilary Mantel was diagnosed with endometriosis, a disease so little understood, she was offered psychiatric treatment.

Please read her incredible article here. Her story mirrors my own so much it is scarey!

http://www.guardian.co.uk/society/2004/jun/07/health.genderissues?CMP=twt_gu

Here are a few bits from the article that really hit home for me.

When I was 27 – a skinny, grey-faced scrap, bleeding continuously and hardly able to stand upright – my disease was named. But it was named on the operating table, and to make me viable

Endometriosis is a condition that is under-researched and poorly understood.

Subsequent drug treatment expanded me to twice my previous size; I went to live in a body I didn’t recognise. Fatigue and intermittent pain are still my companions. My soul rattles around in its capacious house, and dwells on the life I might have had if, aged 11, I’d thrown down my wallpaper scraper and yelled, “I won’t put up with this!”

Endometriosis is unpredictable, capricious, tenacious, a destroyer of careers, families and relationships, and it is worth more money and research effort – not only for what we would learn about the disease itself, but for the light that would be shed on infertility, immunology, and the connection between illness and psychological states.

What seems crucial is for the sufferer to become informed and active in her own treatment. No one will like me for saying this, but I’ve often noticed that it doesn’t seem to matter whether a woman goes in for yoga or reiki or dancing on hot coals at the full moon – she starts to get better when she starts to take charge.

Meanwhile it is urgent that doctors, nurses, teachers know about endometriosis and act on their knowledge, to spare young women years of pain, loss and emotional damage.

Meet TULIP

TULIP is a brand new, exciting project helping chronic illness sufferers to cope with any issues in the workplace. Their website is live now, and will officially be able to subscribe members in the next couple of weeks.

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Here is a the story behind TULIP from the Founding Member Danielle:

The idea for TULIP first came to me when I had a bad experience at work myself.
My employer began disciplinary proceedings when I had 3 absences within 6 months, all due to endo, and no longer than 2 days each.

I’d never been in any trouble at work before, I’d only been diagnosed that same year and I still didn’t really understand my illness. I couldn’t promise I’d never have another day off sick, every treatment I’d tried so far hadn’t worked and I didn’t know what was around the corner!

I tried everywhere for advice but the likes of ACAS and the CAB knew nothing about endo, although they were as friendly and helpful as they could be. Any advice I found online was vague and I couldn’t afford to pay for professional legal advice, especially when I was at risk of losing my job! I felt completely alone. I had to attend a disciplinary hearing and was told I was entitled to have either a work colleague or a trade union representative accompany me. I was no longer a member of a union as they had been unable to offer any advice in the past because they didn’t understand my condition, and I didn’t feel comfortable putting a colleague in that position, so I had no choice but to go to the hearing by myself

It was the worst mistake I ever made. There were 2 of them and they took turns in reeling off accusations and threats about my job, I hardly got chance to speak. I went in to the meeting with three A4 pages of notes, as I wanted to mention my achievements and accomplishments at work, and the fact that apart from my absence record I was a model employee, but I was never given any opportunity to defend myself or put forward my own version of events. I’m a strong person and they reduced me to tears!

I was given a written warning and told to leave the room, before being warned if I had any more absences the consequences would be very very serious. My endo is made worse by stress, and over the next month I worked myself into such a state of panic that most days I struggled to get out of bed. It was a  Catch 22 situation – I was scared of being ill, but being scared was making me ill! I used to love my job and now I dreaded going to work.

In the weeks that followed, I asked for time off for hospital appointments but my requests were always refused. I wanted to start GnRH as the treatment I was on wasn’t working, but I could never get them to agree to an unpaid couple of hours off. My health continued to deteriorate, until things came to a head one day in a meeting with a senior manager. She told me I should, at the age of 23, with no kids, “just go and have a hysterectomy”! I quit the same day as I finally realised I had to put my health first

As soon as I got back on my feet, I started planning a project that could help other people who had been in the same situation as me. TULIP was originally just going to be a helpline for advice and support on employment issues, then it occurred to me how much more help we could provide if we were a Trade Union

I can’t stress enough that we are not your average Trade Union – we won’t be going on strike or demanding higher wages! Our goal is simply to stop people with chronic illnesses being  treated unfairly in the workplace. Your monthly membership fee covers everything you could need if you were to face a dispute at work. We have legal experts on hand to offer accurate, up to date advice on employment law, your Union representative can contact your employer on your behalf if you have any problems you don’t feel comfortable addressing yourself, and we can accompany you to any meetings or hearings you may need to attend

We will also run campaigns wherever possible to raise awareness of chronic illnesses. I strongly believe if employers were educated more, there would be less discrimination, and by raising the public profile I hope to be proved right!

As we are a non profit organisation, any money left over will be re-invested in the company to improve the services we can provide for you.

There is a lot we want to do, but we are starting off small! However, one long term goal is to be able to offer financial assistance, in the form of a grant, to our members who need it most. We all know how hard it can be to cope financially when you take an extended period of time off work, for example after surgery, and we’d like to help make those hard times easier.

We are also very passionate about charity, especially the fabulous work that Endometriosis UK do, so for any endo sufferers who join us, we will donate 10% of your monthly membership fee, for life. If you have another chronic illness, please feel free to choose a charity relevant to you.

If you would like any further information please visit http://www.tuliponline.co.uk where you can also register for updates as soon as membership is available.