Read Rosamund’s story of what she’s learnt during being part of HS2’s journey
“I have a rare genetic muscle wasting disease called Limb Girdle Muscular Dystrophy that affects my legs and hips. That’s why I have a stick sometimes and have an unusual walk.
That’s not really how I introduce myself; it’s what plays in my head when I get inquisitive looks from people who I am meeting for the first time or people that haven’t seen me for a long time. It’s a small world and the bouncy woman they used to know on the London 2012 programme has lost her bounce. My bounce became virtually extinct as I joined the HS2 programme and I am still here nearly four years later.
I used to make an excuse about my unusual walking gait… an old injury playing up… a horse fall… I now try and be brave. If people make a comment or ask, I tell them. Some people handle my reply well, others can’t either wait to get away, change the subject or offer advice on treatments and possible cures.
It’s uncomfortable, it’s not their normal but it’s mine, and it’s taken me some time to come to terms with that.
It’s not just the condition you have to manage at work and at home, it’s the reactions to it as well.
That can be as hard as the condition itself. You already feel different, you are already worrying about whether you can make a meaningful contribution to work. Will you keep your job can you pay your bills… will you ever be taken seriously again or will you be pitied?
My journey to raising awareness started by announcement through a group email during the summer of 2019. This was not any old group email. This was the supply chain Joint Venture leaders; that’s all the big guns that lead our supply chain on the biggest project in Europe. We had been on a site tour together and I decided the safest thing and right thing to do was to take my stick. I got some looks and a few comments; the usual.
These guys and they are all guys by the way. I am only often one of two or possibly three women and I am now the disabled one amongst them. These guys are potentially future employers for me! What a crazy idea, why didn’t I stick with the horse fall excuse?
I decided that if HS2 could be as supportive as they are then I want to encourage through sharing my circumstances that my supply chain can do the same. They didn’t disappoint, I had many supportive comments and I do not feel any of them have treated my any differently since that day.
I didn’t stop there I wanted to share my story with my fellow employees and featured in our interchange and through that I have made some good connections and support network. The EDI team helped me achieve that… whilst it was brave to tell the guys I mentioned above I only saw them once or twice a month. I see my work colleagues nearly every day. Way more personal.
There are other major projects to and whilst daunted at visiting Hinckley Point and taking part in a site tour I was determined to do it and to openly talk about my condition. I received a warm welcome, an arm for support and we had a fantastic tour together. Please see the picture below.
Outside of work I feel it’s important to take my good experience with my employer, my supply chain and other projects and share this with the charity that support me. The Muscular Dystrophy charity based in Coventry have provided me with amazing treatments that are helping me stay mobile. I have also made connections with other service users.
So far, the forums have not been for me or given me the support I needed. I am a positive person who enjoys being at work. I needed that guidance and it was not available when I searched for inspirational people in work with muscular dystrophy I did not get a huge list back. The charity is so busy with managing the treatment services they don’t have capacity to do more. These treatments are not NHS funded so they rely solely on donations from businesses that support the charity and service users. With the charity’s blessing I am in the process of setting up a support network with another wonderful woman that focuses on being in work, keeping financially mobile and supporting employers to understand muscle wasting diseases.
My take-aways are:
- Educate your employer; the more they hear from you the better it will aid understanding. Leaving them to google will not help either of you!
- Focus on what you want to achieve and not what limitations the condition puts on you.
- Learn to ‘plan, prepare and pace’… Project manage your condition! Those three words are how I manage a full-time job, my horse Bo, my dog Dora, my treatments, study and have an active social life.
- Don’t be afraid of doing things differently. It’s like any change, it feels alien at first and you will get all the feelings you get when you are going through change. It passes.
- Muscle loss is a grieving process… the sooner you allow yourself to grieve the more your wellbeing will benefit.”
Working with HS2
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