Robert Mitchell-Thain
CEO PBC Foundation
It’s not easy living with an invisible condition: unseen, often undiagnosed, untreated and all too often misunderstood and alone. However, it doesn’t have to be this way.
A tiredness that sleep doesn’t fix; an itch under the skin that cannot be scratched; undetected damage to the liver for years; these are common features of primary biliary cholangitis, a rare autoimmune condition which affects the liver.
PBC care and challenges
As with many invisible conditions, diagnostic tools are available, as are treatments, care and support. There is so much that can be done to treat and to support someone living with PBC. Only 5% of rare diseases have any kind of treatment, and PBC is in that five.1 Yet, there are inherent challenges in getting a timely diagnosis. The invisibility of symptoms, or liver damage, is part of that challenge.
Self-support steps
If you are living with invisible symptoms, you can still be seen, understood, supported and able to make improvements in your life. It just takes the courage to have the next conversation. It may be with your partner, family, work or doctor; but the next conversation you have could help you in your journey.
Start by diarising your symptoms. Give them a score where 1 is less impact, and 10 is the worst. Record the impact of those symptoms: emotions, barriers, what you couldn’t do on each day. Then, take it to your doctor, preferably with support, to discuss in detail.
If you are living with invisible symptoms,
you can still be seen, understood,
supported and able to make improvements in your life
What to do if you suspect PBC
It may be PBC. It may not be. The conversation needs to be had. So many people start their journey towards better health in this way, and you can too.
If you are living with PBC, or suspect you may have it, then you can contact the PBC Foundation directly for support and information, all of which is freely available. We have a website, an app and a helpline where we are waiting to support you: all free for you to use.
[1] Gov.uk. 2025. Major change for rare disease treatments on way, signals MHRA. tinyurl.com/3jzfm6a2
