I have lived with chronic pain for and Ulcerative Colitis for over 20 years.  Most people don’t realise, as I try to have a positive outlook and smile. So, when I share this, those that don’t know me well are surprised. However, it has been debilitating at times and started after the birth of my son.  He is now 21.

It took a really long time to get diagnosed with chronic pain, the feeling of going mad, because clinicians didn’t understand why I was getting pain and that it was ‘all in my head’.  I felt humiliated and unheard. 

Living with chronic pain and ulcerative colitis has taught me a great deal about resilience and the daily struggles that come with hidden disabilities.  These conditions aren’t always visible on the surface, but their impact can be profound.  From navigating flare-ups that leave me feeling drained and foggy to managing the uncertainty of my health, it’s been a journey of both challenges and growth. 

One of the biggest hurdles people face is the misconception that because disabilities are not always apparent, they must not be significant. This couldn’t be further from the truth. The toll that chronic pain and ulcerative colitis can take on my physical and emotional well-being is very real, even if it’s not always visible to others.  Even using a ‘disabled/easy accessible’ toilet, I have been challenged as I look well.

Despite these challenges, I’m incredibly fortunate to have a strong support network that helps me through the tough times. Their understanding and compassion remind me that I’m not alone in this journey.

By sharing my story, I hope to shed light on the realities of living with hidden disabilities and encourage greater empathy and understanding from those around us. It’s important for others to recognise that just because someone may not “look” disabled, it doesn’t mean they aren’t struggling. Together, we can foster a more inclusive and supportive environment for everyone, regardless of the challenges they face.

Who or what has helped you the most?

For my Ulcerative Colitis (UC), I was managed by Kathy Webb, Consultant Nurse and my consultant were Chris Oppong, followed by Chris Hayward.  When I have had flares, Kathy has always been there for me, her compassion and empathy are second to none. 

I had a particularly difficult time with joint pain in the most recent past, which was different to my normal pain.  After going to Rheumatology and dismissed as ‘just your fibro’, I went to Kathy because I was beside myself.  I was really struggling.  She could have said it wasn’t her area, but she did some research and we trialled a different medication which would still continue to manage my UC, but also managed rheumatoid arthritis.  It was like a wonder drug.  She also advised I get a second opinion from another Rheumatologist and she made contact with them to discuss my case.  This made such a difference, I was listened to and helped through that period with care and compassion.

My Chronic Pain was diagnosed many years before by Dr Tony Davies, Pain Consultant.  After seeing many clinicians, GPs and privately over the years, I finally found my person. He believed me and because he had a specialist knowledge in Fibromyalgia, he helped me with tools to manage it.  For patients to be able to deal with chronic, long-term conditions, enabling them to have control over their treatment plans was very powerful – I felt more in control.  I felt listened too, I was heard.  I remember crying because for the first time, a clinician believed me and I wasn’t made to feel stupid.

It also highlighted to me how much expectation I put on myself, the need to fix everything and I learned to say no, for my own wellbeing, to things which would impact negatively.

Additionally, within UHP, I was given an opportunity to be coached.  This helped me manage myself, how much I took on, who was there to actually help me.  I didn’t have to do it all on my own.  It helped change my mindset.  It was so significant, I trained as a coach myself. I also have a brilliant network of very close friends, who say it how it is, especially if I’m pushing myself too far.  They will give me a talking to and I sometimes need that.  My family have been there at my side to see the highs and lows and have been a significant support.

What advice would give to others about how to support colleagues with health conditions?

1. Educate yourself: Take the time to learn about your colleague’s health condition. Understanding what they’re going through can help you provide more meaningful support.
2. Listen and Validate: Sometimes, all it takes is a listening ear and a compassionate heart. Let your colleague know that you’re there for them and that their experiences are valid.
3. Offer Practical Support: Whether it’s covering for them when they need to take time off for appointments or offering to help with tasks that may be challenging for them, practical support can make a big difference.
4. Be Flexible: Recognise that your colleague’s health condition may impact their ability to work at times. Be flexible with deadlines and schedules and offer accommodations when needed.
5. Respect Their Privacy: While it’s important to offer support, it’s equally important to respect your colleague’s privacy. Don’t pry for details about their health unless they choose to share them with you.
6. Check-In Regularly: A simple “How are you doing?” can go a long way in showing your colleague that you care. Regular check-ins can help them feel supported and valued.
7. Advocate for Inclusivity: Be an ally for your colleague by advocating for a more inclusive workplace. Raise awareness about the challenges faced by people with health conditions and push for policies and practices that support their needs.

Above all, approach your colleague with kindness, empathy, and a willingness to help. By fostering a supportive environment, we can create workplaces where everyone feels valued and included, regardless of their health challenges.