Being ‘rare’

The process of living with, and coming to terms with, the diagnosis of a rare condition is similar in some ways to the challenges of more common conditions.

Challenges similar to more common conditions include:

• working out implications for your work or finances
• how it will affect your relationships
• how you feel about yourself and your identity
• coping with difficult symptoms
• managing worries about the future

Additional challenges associated with a rare condition include:

• less awareness of them amongst both healthcare professionals and the general public
• not knowing many other people with your condition
• a greater degree of uncertainty about how it will affect you both day-to-day and longer term
• fewer, or less clear, treatment options

Managing lack of awareness

The lack of awareness that exists about rare conditions generally, but also for specific rare conditions can be frustrating.

In our society, we are still more used to the idea that we become ill, receive treatment and then recover (or not). As many rare conditions are managed and ‘lived with’ rather than cured, this can mean people are less likely to remember to ask ‘how are you?’

Friends and family may not always offer practical or emotional support as readily as they do with more common conditions such as cancer or illnesses they have heard of. They may also find it more difficult to understand what a diagnosis means, and so be less able to respond in a way you find helpful.

Some health professionals may not have heard of your condition. This can be frustrating and anxiety-provoking as we are often brought up to believe that doctors are always the experts.

What helps?

There may be times when you need to decide when, or how much, to say about the rare condition you are impacted by. This might be socially, at work, or with healthcare professionals.

If you decide you want to say something, having a short verbal summary that describes your condition that you can then ‘adapt’ for the situation you are in can be very empowering.

We give some more information about deciding what you want to say here in Talking about your condition

Becoming an ‘expert by experience’

Some people impacted by rare conditions go on to develop knowledge and expertise about their condition.

This can help you discuss and make more informed choices with your healthcare professionals about treatment options, care, or managing certain symptoms. 

This can feel very empowering. At other times, it might feel very daunting to be taking such an active role in decisions about your own, or another person’s, future health and wellbeing.

The relationship between physical and mental health

Our mind and body are very linked. How you feel physically can have a big impact on mood, for example, if you are in pain or not. Equally, if you are feeling anxious or low, it can also impact your physical health.

Some rare conditions biologically affect mental health and wellbeing. This might be because of how they impact brain chemistry, thinking or hormones. If this is an aspect of your condition, your doctor should be able to give you more information about this.   

It’s not unusual to experience emotions not just as ‘feelings’, but physically too. For example, having little or no energy when we are depressed, tummy upsets when we are anxious, or headaches if we are stressed.

Most rare conditions have the capacity to indirectly impact mental health and wellbeing as a result of the challenges that can be involved in living with them.

The relationship between our physical and mental health can be quite complicated! 

What helps?

• Be aware of the ways in which you or a family member manage emotions, this can help you work out whether something might be an emotional response, a physical symptom, or a combination of both.
• If your rare condition affects mood or thinking as one of its symptoms, this aspect should be monitored and treated as part of your care.
• Talk with people you trust and know you to try and understand why you or a family member is feeling, or behaving, in a particular way.

All in your head?

Some rare conditions initially present with symptoms that are very similar to common mental health problems. This means they may be initially mis-diagnosed. Some people also have health worries (or worries about a family member) dismissed as ‘all in their head’.

If either has happened to you, this is likely to have been very upsetting. It can take time to rebuild confidence in your own understanding of yourself. 

It can also take time to feel more confident again in talking about your mental wellbeing to healthcare professionals.

What helps?

• Remember that physical and mental health are very linked. It can take time to work out ‘what’s to do with what’.
• Talking to people you know and trust can help you become clearer.
• If you are struggling with your mental wellbeing (or worried about the person you help care for), let a healthcare professional you feel comfortable with know.

Living with uncertainty

Rare conditions often involve a lot of uncertainty. This includes:

• macro uncertainties such as the impact of the condition over time, life expectancy, or what treatments are available
• micro uncertainties such as if it will be a good or bad day for symptoms, when an appointment date will arrive, or which doctor will be in the clinic

As humans we don’t like too much uncertainty so living with these can be pretty challenging.  

Learning techniques to help cope with uncertainty are important for your mental wellbeing. We talk more about uncertainty, change and loss here.

Looking after your general health

Managing and living with the impact of a rare condition can take up a lot of time and energy.

It can also mean that your general health or wellbeing sometimes takes a back-seat. Try not to let this happen (even though this might be hard!)

Looking after your underlying physical and mental health is going to help you feel more resilient and more able to cope with the demands of your rare condition.