UK Disability History Month: Living with reduced mobility and bipolar disorder

 

Disability History Month

For our third interview for Disability History Month, one of our Patient and Public Involvement (PPI) members spoke about their visible and hidden disabilities such as reduced mobility and bipolar disorder.

They shared their lived experiences, why it’s important to take part in research and why they wanted to join the PPI group at the King’s Clinical Research Facility:

 

“There are all sorts of disabilities, some visible, others less so, like some mental health conditions which are rarely obvious at first sight.


“I have both visible (limping because of chronic pain from fibromyalgia/osteoarthritis) and invisible disabilities (severe mental health conditions like Asperger's or bipolar disorder) which nobody could guess.

“Reduced mobility and chronic pain often badly reduce my ability to walk, including performing regular, necessary errands like going grocery shopping. It also forces me to stop all the sports and exercise I used to enjoy.


“My anxiety, worry and occasionally inappropriate communication skills limit my ability to attend social events and take part in certain activities and hobbies. Or, they make me feel very different and totally inadequate when I push my boundaries and try to do something that others would call as ‘normal’, like attending a party.

“At work, I often was in a lot of pain so I had to make sure I could regularly take ‘walking breaks’, and stretch. Being a senior manager, I could organise my time and work accordingly. Being paid well and having the money allowed me to have a bi-weekly massage and I'm not sure how I'd have coped if I didn't have these opportunities.

 “My other issue at work was being bipolar. With the very heavy workload, high level of responsibilities and tight deadlines, I could easily get overwhelmed and stressed, working until late at night every day and often weekends. This led to insomnia, increased paranoia and eventually a psychotic episode.

“Although my line manager and HR knew about my mental health issues, no adjustments were offered. This was before the Mental Health Act 2007 was introduced so hopefully things are different now. At the time, this resulted in the end of my career.

“The one thing I would tell someone about hidden disabilities would be that they make our life much more difficult to manage, and at times even asking for help doesn't necessarily work. People just can't understand how much we struggle or even that we struggle. It's easier to help someone when one can see their problems.

“I've taken part in a few clinical trials where bipolar patients were needed, one looking at a supplement to improve memory and concentration and another two were to assess new potential interventions. I enjoyed those as I had felt that I had positively helped medical research, however one trial I participated in could have been done differently to make it better.

“I've never turned away an opportunity to take part in clinical trials as I feel it's a very important thing to do for society. This is why I wanted to be part of the King’s CRF to see the other side of the coin, having the opportunity to contribute that way as well. I’m loving all of my time working with these lovely people at the CRF and enjoying their enthusiasm.”

Visit our website to learn more about PPI at the King’s CRF.

 


Tags: NIHR Wellcome King's Clinical Research Facility -

By NIHR Wellcome King's Clinical Research Facility at 20 Dec 2024, 16:46 PM


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