Tag Archives: public speaking

Expert By Experience

speechI’m ever so slightly nervous.

I’ve been invited to speak at a neurological conference, about my experience of MS treatment: in my case, Lemtrada.

I’m nervous on two counts:

  • I’m not a hugely experienced public speaker
  • It’s taking place just outside Budapest, Hungary (and I’m going in two days, eeeek).

However, I am going and I will do my absolute best – it’s a topic I’m passionate about and if that means conquering my MS-travel-related-anxieties, then so be it.

I’ve written (and re-drafted) my speech and I think it comes from the heart. In it, I discuss my decision-making process in choosing the treatment I had and the benefits of it. And also the downsides.

It it empowering to have a voice and to discuss in public the importance of choice. Reflecting back over the last couple of decades of my life, my voice was somewhat quashed; whether through experiences or through people I allowed into my life, with all their notions about how I should act, what I couldn’t say. It’s kind of poetic irony that my first relapse affected my speech.

So MS may have taken away my speech with one hand but it gave me back an attitude – a desire to create change – with the other. Blogging has been a huge part of this – from meek beginnings, where I hid my identity for fear of ridicule or prejudicing the legal case against employers who sacked me for having MS, to my more strident posts, yet always trying to demonstrate a balance of how life actually is for a small family coping with MS.

However, finding a voice is also about listening to other voices, and the thousands of comments on my posts I’ve received over the years have proved that, over and over again. You guys have sanded off my sharp edges, picked me up when I’ve been down and virtually held my hand through Teenager crises.

And that’s why a large part of my speech is devoted to you, and the power of support. When I took The Teenager to Uni almost two weeks ago, I didn’t feel alone, even as a single parent. I really felt that you guys were there with me, every step of the way.

And it’s also why we are all ‘experts by experience’ – a phrase mentioned to me by a fellow blogger, Patrick. We both agree that the usual, ‘expert patient’ can still make us appear as passive recipients of care, whereas ‘experts by experience’ emboldens us, allowing us to stand up and say, ‘yes, amongst everyone here, the neurologists, the physiotherapists, the researchers, I’ve had the treatment and I am the expert too.’

So, listen to me?

It’s me who went through the lumbar puncture, the MRI’s, the blood tests, the initial steroids to ward off relapses, the actual treatment, administered in a drip. I’ve been completely floored and got back up again. The different tablets for weeks afterwards to ward off infection. The fatigue, the weakness, the all-too-quick-recovery back into work before time.

We’re symbiotic – the health care professionals and us, the patients.

We work together?

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Speaking Out…

Working With MS

Four out of five people with MS become unemployed within 10 years of diagnosis.

One in four people with MS of working age are employed, compared to three out of four of the wider UK population. 

Shocking facts, considering MS is the most common neurological disorder among young adults and is most often diagnosed between the ages of 20  and 40.

With this in mind, and my experience of having been sacked after my own diagnosis, I attended the ‘Working With MS’ conference organised by the Multiple Sclerosis Society Cymru in Cardiff on Saturday. My leg was still excruciatingly painful so I took a walking stick, dosed myself up on painkillers and put a brave face on.

I had been invited to sit on a four-person panel of people with varying experiences in the workplace and we would each talk about how MS had affected our work. I’m not a public speaker by any stretch of the imagination and I was panicking. I used to hate standing up in school to talk about ‘What I Did On Holiday.’ I go bright red in the face, completely forget what I’m talking about and start gibbering nonsense.

I needn’t have worried, it went well (I hope). I am passionate about encouraging people not to accept bullying or discrimination at work. I was bullied for over a year, a sustained campaign to force me to resign. When I didn’t, I was sacked. I was coping with this alongside going through the whole MS diagnostic process and the combination of the two nearly drove me over the edge.

It was without a doubt the most difficult and soul-destroying time in my life and I don’t want anyone to go through what I did. With incredible support I started tribunal proceedings and won my case.

The conference was an excellent source of information, but we still have a long way to go to encourage people with MS to stay in work, to ask for adaptations and to educate employers. We have a lot of talent between us and it would be a travesty to let that go to waste…

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