Relationship Difficulties
Having a child diagnosed with a rare disease, or being diagnosed yourself, can have an impact on a couple’s relationship or on the relationship with wider family. It can make the family unit feel stronger and united. However, not everyone reacts to diagnosis, difference or uncertainty in the same way. You might find relationships become more strained with a co-parent, your partner or other family members and friends. Sometimes this happens as people try to cope in their own way, which may be different to yours.
Expectations
Sometimes our expectations of others, their expectations of us (or what we think are their expectations of us) are a source of tension. Effective communication is important for clarifying expectations but what we think we have said and what has been heard and understood are two different things.
Different ways of adapting to diagnosis
It can be very helpful to recognise that people have different ways of reacting to a diagnosis. Some people are information seekers and want to read the latest scientific research. Some people cling to hope of a new medicine, whilst others will see only the harshest prognosis. It is important to be compassionate towards ourselves when we are dealing with difficult news and recognise acceptance as a journey that people approach in different ways and at different speeds. Some people struggle to ever reach acceptance of a diagnosis.
If the people involved in collective decision-making are in very different places in terms of adapting to diagnosis, this can lead to tension.
Tips and Advice
Some useful thoughts from our rare disease community include:
Recognise that everyone is different in how they respond to a rare disease diagnosis.
Divide and conquer: it can be very useful if co-parents, couples, friends and family members have different approaches to dealing with diagnosis. They can take on different roles and spread the burden.
Communication is key. If you’re stuck in a negative communication cycle, finding an informal mediator or a trained couple counsellor could help improve this dynamic.
Try not to make assumptions. Sometimes we need to be more direct. We think people ‘should’ know what we need but it is also our responsibility to ask for what we need. We can look to others like we are coping a lot better than we are.
Try to avoid storing up frustration. It has a way of escaping at the wrong time or place.
Make space in the relationship for things that have nothing to do with the rare condition. This is easier said than done but can really help us keep perspective.
It can be tempting to pin all relationship issues on the diagnosis or caring responsibilities but all relationships require effort and all relationships evolve over time to some extent, with or without health issues to contend with.
Relationships with professionals
Relationship issues aren’t just about the family. A rare disease diagnosis often means having to have ongoing engagement with a wide range of professionals across health, social care and education. Whilst some of these relationships will feel comfortable and supportive, others will not. It can be very challenging if there is a high turnover in staff, long waiting lists or bureaucracy that brings delays.
A mismatch between expectations and what actually happens can leave you feeling frustrated or even helpless. A lack of clarity or clear communication is often at the heart of such issues. Over time, it can become hard not to take high emotion into engagements with professionals, especially if you feel you or your child’s needs are not being met.
It is completely natural that you should have strong feelings, especially if something has gone wrong or you feel let down. However high emotions can cloud our ability to listen well and make a good case. Also, sometimes what we think ought to happen and what that professional can make happen are not the same.
Over time, it can become difficult to put down the strong feelings between meetings and there can be some transference of tension between one meeting and the next or a meeting and home life. It is not unusual to struggle at some point on the rare disease journey, after all you do have the rest of your life to manage as well. Meetings and appointments are time consuming and can be tiring. Also, you aren’t getting to step away from the outcome of the meeting or appointment in the same way as the other people at the table because the issues relate to you and/or your child’s life.
Be compassionate towards yourself afterwards. Try to make some time to relax and reflect calmly. Give it time and space, if you can. It can be challenging but also try to be understanding of the limits of the role of the professional. It is always useful to ask for clarity on their role and what they can and can’t do, at any stage.
Sometimes we need more help than we can give ourselves.
If you are struggling with a particular professional or service provider, our team of Rare Navigators can really make a difference. We can help rebuild bridges through acting as your advocate, talking to professionals with you or on your behalf.
If relationship issues are making you feel unwell, physically or psychologically, do reach out to your GP. Our RAREnavigators can also provide practical help, emotional support and help you find talking therapies and initiatives that work for you.