June's Guest Blog - Tamsin Campbelton (LUPUS UK Contact)

[Paul_Howard]

This month's guest article has been written by Tamsin Campbelton. Tamsin is a member of the Dorset Lupus Group committee and is a telephone contact for LUPUS UK. She has written about how and why she became a contact;

"As a LUPUS UK Contact, I like to think that all lupus patients, whether having had a diagnosis or not, have access to a ‘service’ to talk to people like me, in whom they can confide and be reassured. When I was first diagnosed 18 years ago this wasn't available, and as a frightened teenager whose world fell apart when I was diagnosed, it would have helped me tremendously if there had been someone I could talk to who understood what was happening to me – whereas the reality was that lupus was still relatively unheard of and I felt there was no one I could speak to about it.

Roll on 15 years later and I had the opportunity to get involved with the Dorset Lupus Group. I was asked to join the committee after turning up to an AGM, and after a while I was asked if I would be a contact. I jumped at the chance of being ‘that’ person I wished I could have talked to all those years ago. I felt I would like to help others who needed someone to talk with, who knew how they felt and what they were going through with their families and loved ones.

Initially I went on the LUPUS UK Contacts course, where I met similarly minded people, and together we went through many scenarios, questions we might be asked and how we might deal with awkward, difficult or embarrassing situations. I think generally as a lupus patient, one has more empathy towards others with lupus, as you know what it is like to have the symptoms, even though you might look well, and this is one of the biggest hurdles to convey to others.

As a contact we must be reassuring and make the person we are talking to feel at ease, listen and give advice to the best of our knowledge. Above all we do not take the place of medical professionals.

I can get calls during the day or evening and I always try to make time to talk, although this isn't always possible with a family and business to look after, in which case I will arrange a time to call back. I find that callers are quite tentative when initially talking, then relax and open up more when they realise I also have lupus and can understand their symptoms and how they are feeling.

I really enjoy that I am helping people to understand (their) lupus better, whether the caller is newly diagnosed and scared, a family member who is worried about a lupus diagnosis and what to expect, or a patient whose family doesn't understand them. Every call is different and every call is important."

You can find out more about the Dorset Lupus Group on their website here - dorsetlupus.com/

A full list of LUPUS UK contacts is available on the back page of News & Views magazine in case you ever want to talk to somebody.