About being a trustee – Katharine’s story

Here is our second ‘Trustee story’, this time from Katharine. 

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When I was first diagnosed, I didn’t even know that there was a patient association in my country, let alone a European umbrella organisation working towards common goals on behalf of other European associations.

I haven’t been able to work for a few years due to different auto-immune diagnoses, one of which is lupus, but, now that I am being better followed up and have a better medication regime, I realise I can do a little to help out.

When I learned that LUPUS EUROPE were looking for nominations to be a trustee, I was interested but absolutely terrified of not being able to do the job. Unlike some people within LUPUS EUROPE, I don’t have experience of running a national patient association and I also hadn’t used my work skills for a few years so felt rusty and lacking in confidence.

In the years prior to applying to becoming a trustee, I had been helping out by attending certain important events, representing LUPUS EUROPE at EPF & IAPO. I realised when attending these events that I would do a far better job if I were more closely involved in what was going on within LUPUS EUROPE.

That realisation is what eventually decided me and, with assurance that I wasn’t applying for a specific role – I felt so unsure of what I would be able to do – I decided to take the plunge and put my name down.

It is obviously an important commitment but it is also a very flexible one. Every trustee does what they are able to do and the whole team works together to best harness the skills each person may have.

Our conference calls and face-to-face meetings are busy and animated. We are all very much encouraged to give our opinion. We don’t always agree but work together to find the best way forward. The amazing thing about being involved in any LUPUS EUROPE and patient advocate activity is the ‘energy’ in the room. People may expect a room full of sick people to be a dull place but nothing could be further from the truth. Of course, as a lupus patient, I get tired, but that energy truly makes me feel alive!

I have found this challenge to be very rewarding personally. I am able to bring unused skills back up to date and have discovered more about how I can develop as a person and what I’m really good at. I work with a wonderful and dynamic team and have met many other like-minded people through events I attend on behalf of LUPUS EUROPE.

And the best thing… I’m helping move things forwards for lupus patients across Europe.