Claire’s story

Claire, from Fife, has struggled to get support for her physical health, which was often dismissed due to her mental health. She’s supporting the Show Up campaign calling for urgent action to address the discriminatory healthcare system.

“I was diagnosed with depression and anxiety aged 15, then as an adult, other diagnoses were mentioned (such as emotionally unstable personality disorder (EUPD)). I was then diagnosed with autism aged 27 which I feel better explains my symptoms. I still live with depression and anxiety.

“As a teen/young adult I was very mentally unwell, and doctors struggled to find the right treatment for me. In my early twenties, I started experiencing a lot of pain in my joints and I was referred for blood tests and to rheumatology.

The rheumatologist was very dismissive and said that when I felt mentally better the pain would go away.

“My mum was at the appointment with me, but the consultant didn’t listen to her either. I was sent away with no follow up or sign posting to other services or support. I was left feeling like I was just making things up.

“I lived with the pain for over a decade before getting referred again to rheumatology after one of the fingers in my left hand became swollen and my hands were really painful and turning blue. I couldn’t do the things I used to because my hands were so sore - I would cry in pain if anyone tried to straighten them.

I struggled with my mental health because of all the pain; I was very down and worried I wouldn’t be listened to if I sought help.

“I asked my GP not to refer me to the consultant I had seen before because she was so dismissive of me.

“Instead I was referred to a specialist, who did lots of tests, asked lots of questions and did an ultrasound of my hands. Over the course of that year, I was diagnosed with polyarthritis (inflammatory arthritis in several joints), Raynaud's syndrome (which was what caused my sore, blue hands) and Sjögren’s syndrome (dry eyes, dry mouth and fatigue are main symptoms).

“There was nothing that could be done to undo the damage to my joints. All they could do was prevent further damage by giving me medication to fight the inflammation and to improve my blood circulation.

“Once I was in the service, I got access to lots of help - rheumatology nurses, physiotherapists, podiatrist and occupational therapist - to help me to live with my conditions.

“However, I was also diagnosed with somatoform pain disorder which basically is saying I have pain of unknown cause which they think is in my head. My GP said it’s an outdated diagnosis but it’s on my record. She felt fibromyalgia was what it would be called now but couldn’t give a diagnosis. 

“I think that having access to annual health checks with people who are trained in mental health as well as physical health would be helpful. They need to be able to put aside the mental health diagnosis and focus on the physical health and physical symptoms without bias.

“Before Covid I attended a specialist fitness class for people with long term health conditions and I was able to get gym membership and a support worker, but this hasn’t resumed post-Covid. Having access to these things improved my mental health, I was getting out more, improving my mobility and feeling better mentally.

“Having better employment support and fair social security would improve things for people like me I have had to take a lot of unpaid leave from work, which has had a huge impact on me.

“If I could give a message to other people in a similar position, I would say that if you are concerned about your physical health and the doctor you see is dismissive of your symptoms ask for a second opinion. Take someone with you for support and who can speak up for you to confirm your symptoms, and witness what is said. Don’t just leave it and feel that your physical health problems are due to being mentally unwell.

“It is so important that stigma and discrimination is addressed so that people with mental health problems are not dismissed or discriminated against when physical symptoms arise, so that we feel accepted within our communities, treated fairly and given the support we need.”