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.

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 lupus.net.

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.