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From Feeling Unheard to Setting Up a Support Group

In the early days of having lupus, it was a constant struggle for me just to be heard. This included health professionals, my employer and even with friendships and relationships.

I often felt like they weren’t taking me seriously. I’d try to voice how bad I was feeling but many times it seemed to fall on deaf ears.

It was a horrible feeling - that sense of being dismissed and even at times made to feel like I was some kind of drama queen.

I spent a long time in this feeling of despair and I felt like I was sinking.

Hope from a diagnosis

I felt helpless for a long time, however after having to learn to push to get stuff done and finally, receiving my diagnosis I found that it gave me a renewed feeling of hope.

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Obviously, I wasn’t pleased I was sick but after all the negativity I’d endured beforehand I finally knew I wasn’t going crazy and I was being taken seriously at last.

It was this that seemed to ignite a fire within me where I wanted to help other people on a similar path. I was mastering self-advocacy and finding my power but what if I could also be that person for others to reach out to when they were feeling overwhelmed and unheard? I wish I’d found somebody like that at the beginning of my journey!

Setting up a support group

It was this that gave me the idea to set up a support group for people with lupus and cfs (myalgic encephalomyelitis).

I guess I’ve always been the type of person that loves to listen to other people's stories, and I hate to think of people struggling, you could say I’m a bit of an empath.

I was a little nervous initially when I started the group because I didn’t know what to expect, but I finally felt like I had a purpose.

I found a suitable venue and set about advertising. I enjoyed the whole process and I found some wonderful connections just from doing this.

A safe space

The first meeting was a success, it was a small group but everything just fell into place. I remember people chatting about their own experiences, and how they were feeling. Don’t get me wrong there were some days where I found it a struggle to make it and it was challenging as I didn’t want to let people down by having to cancel, but I somehow managed to get through it.

I loved how new friendships were formed and it gave people a safe space in which to vent and discuss all aspects of having a chronic illness.  We would help each other because sometimes I wouldn’t have experience on a certain issue or problem but another person would, so they could do their bit to help and offer what knowledge or experience they had.

I no longer run the group due to life getting in the way and being a busy lupus mum however I am incredibly fortunate to work as an advocate for

It’s another way in which I can contribute and hopefully help other people on a similar journey.

There’s something incredibly rewarding about that.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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