We will host a live Twitter Q&A Tuesday, 15 November at 1 pm as part of our upcoming #InvisibleConditions Campaign.
The Q&A will be an opportunity for members of the public listen to the experience of one of our campaign case studies, Nic Vine, discuss his own experiences of care and living with two invisible conditions – Osteoporosis and Meniere’s Disease.
If you have any questions you’d like to ask Nic, tweet @CareQualityComm using the hashtag #InvisibleConditions.
Nic’s Story
Meniere’s Disease was my first chronic health condition. My first symptoms were around 1990, but very episodic. My clever GP pointed me at the Meniere’s Society (MenSoc), a self-help charity. I didn’t have a formal diagnosis by consultant until 1996 when the episodes of vertigo and tinnitus were more frequent and serious. Looking back, I suppose the health professionals were slow to diagnose, yet equally I was determined to continue my high-pressure working life with 2 young children and through MenSoc I felt informed and supported.
My Osteoporosis story started in 2004 at a ‘well man’ clinic where a heel scan suggested low bone density. Again busy lives and I did nothing until I had a private DXA scan in 2007 which confirmed the case. So I started taking calcium. The health service would do nothing as I had not broken any bones. In 2011 a simple trip onto a pavement fractured 3 ribs, which triggered an investigation and quickly put me onto medication to reduce the bone loss. So once in their remit I was cared for efficiently. However I suffered heart complications from the rib injury which might have been avoided by earlier bone medication. I don’t have any chronic symptoms from osteoporosis, until my spine starts to fracture which will cause pain, mobility problems and eventually breathing and abdominal problems.
I am lucky in that these conditions do not yet constrain my everyday life, in part because I am determined they won’t. My advice to someone just diagnosed with a chronic condition, especially an invisible one as so many are, is threefold: try not to be worn done by it, you are a survivor not a victim; join and get involved with a charity or support group for that condition because the information will help and the support will stop you feeling alone; learn as much as you can about the condition, from trusted sources, so that you can talk to the health professionals about it and feel you have some ownership and control of your care.