Relationships

When life is hard, it is often those closest to us that we turn to for support.

This section explores the different types of relationships you may have in your life, how they can be impacted when you live with a rare condition, and suggestions to help cope with common problems.

Couples, sex & intimacy

Being a team, managing difficult feelings, dating with a rare condition

Parenting

Ways to recharge, supporting siblings, coping with difficult behaviours

Extended family & friends

Opening up conversations, asking for support, ‘who is good for what?’

Talking about your condition

Deciding what to share and when, talking to children &  young people

Section Guide

9

Diagnosis

9

Uncertainty, change & loss

9

Relationships

9

You & your feelings

9

Coping with pain

9

Fatigue, tiredness & exhaustion

9

Navigating healthcare

9

Sources of support

9

Deciding to have children (or not)

NEW SURVEY

Have you ever tried to access professional mental health support?

 If so, we want to hear about your experiences - what worked, what barriers did you face, what are the gaps? We want to hear from from everyone impacted by rare conditions: affected individuals, parents, carers, partners and family members. You can complete the survey here:

Take the survey