Living with a rare condition

Living with any long-term condition can be challenging, but having a rare disease – or being told your child has one – can feel very isolating, and may have a big impact on your emotional wellbeing. But you’re not alone, and there are lots of steps you can take to help yourself and your family.

How life with a rare condition can affect you

In a 2022 survey from Rare Disease UK, over 90% of people living with a rare disease or caring for a family member with one reported that it affected their mental health, causing worry, anxiety, stress and/or low mood. There are lots of different reasons for this:

A long journey to diagnosis

"The path to diagnosis can be isolating and psychologically draining," says Dr Lina Eliasson, a behavioural psychologist specialising in health. One in four people with a rare condition wait five years or more to be diagnosed – you may still not have a definite diagnosis.

Limited medical knowledge

While it can feel a relief to be diagnosed, especially if it’s taken a long time, there can be new concerns, as doctors may not know much about the condition, which can feel very disconcerting as they may not be able to tell you about the course the disease is likely to take, or recommend treatments.

You may not find much information online, either. Any information you do find may be very scary and it can be hard to know what to trust.

Unsurprisingly, 87% of people say uncertainty about the future makes it difficult to live with a rare condition.

Lack of understanding from others

Having a rare condition can be isolating when other people in your life don’t understand, from your family to your employer.

When you have a widely recognised condition, others are more likely to have some idea of what you’re living with and its potential impacts, at least to some degree. This may not be the case with a condition nobody’s heard of.

Social stigma

Kathleen Bogart, Associate Professor of Psychology at Oregon State University in the US, has studied the impact of living with rare conditions. In recent research she found stigma had a significant effect on people’s mental health. This can include difficulty getting your access needs met in work or educational settings (for example, if you have issues with mobility or energy levels), which can make it hard or even impossible to work or study.

Bogart also cites other people’s judgements, and your own concerns about how society views people with rare conditions.

Living with a rare condition: tips to help you cope

Get expert support

You may find it helpful to talk to a counsellor or psychologist who understands rare conditions. They can listen to your concerns and may be able to suggest strategies to help.

If you can’t get psychological support through your kidney unit, contact Kidney Care UK's free specialist renal counsellors through our Counselling Service – they can help whether you’re living with a rare condition or you’re a caregiver.

Open up

If people close to you understand what it’s like to live with a rare kidney condition, you may feel less isolated.

Friends who know that you’re often low on energy, or that you’re pressed for time as a caregiver, are more likely to understand it’s hard for you to make social arrangements and could work around you – bringing food to eat together, for example.

If you work, explaining your condition to your employer can help them make adjustments so you can do your job, for example letting you work flexible hours.

It’s not always easy to open up to people in your life, and it can be tiring having to talk about your condition, but even talking to a few key people can make a difference.

Ask for help

Think about the support that people in your network may be able to offer.

"Friends and family often want to help but may not know what to do," says Dr Eliasson. "You can make it easier for them to support you by being open and clear about what you’d find helpful. You could write a list of things you’d find supportive, whether big or small, one-off or regular – anything at all that would make a difference to you, such as help with getting to appointments, looking after children, doing the shopping, cooking a meal or going out to see a film with you. You can then share it with family and friends. Even better, you could make a diary and add things you‘d like support with on different days. Friends and family can then 'sign-up' to tasks they could help with."

Connect with others

Finding a group for people with the same condition can be a game-changer. You’ll meet people who understand what it’s like to live with your condition and may have found ways to cope.