Helping without knowing the diagnosis

Helping without knowing the diagnosis: a life in limbo

The testimonies back this up. In many cases, the diagnosis takes years to arrive. Sometimes, the diagnosis never arrives. It is estimated that 40 to 50% of people with a rare disease do not have a precise diagnosis. In Quebec, the average is 8 years before being diagnosed with a rare disease.

The situation is difficult for the children and adults affected because of the symptoms but also because they do not know how to deal with it. For those around them, this vague context complicates everything. How to help without knowing the diagnosis? What role should we adopt during this period? How do we get through this period of waiting that everyone hopes will be temporary?

10 tips for helping without knowing the diagnosis

1. Acknowledge your contribution: you help, you accompany, you support;
2. Remember everything you already know. You know the person you are helping and the bond between you. You also understand their needs, what they like, what makes them happy. This is also your relationship with the person being cared for.
3. You do your best, you can highlight all your good deeds... even the small ones.
4. You have much to gain by recognizing your role. Helping without knowing the diagnosis sometimes means being a caregiver without knowing it. There are practical tips to help you recognize yourself;
5. Your entourage could support you, why not ask them? You could use the help of people around you;
6. Your role as a caregiver is evolving and we encourage you to remember that you have a great capacity to adapt;
7. The person you are caring for needs help, and you need services to help you provide that help. Ask for services for yourself. For example, you could get respite or home care services. In other words, there is help available near you;
8. Register yourself and the person you are caring for with the Quebec rare disease patient registry, "a unique community space where rare disease patients and caregivers in Quebec can register and share their data";
9. Read the Plan d'action québécois sur les maladies rares 2023-2027. Access to care and services should be improved, diagnosis and screening facilitated;
10. Listen to the words of others who are going through similar situations. In the Caregiver Podcast (in French), parent caregivers Jean-Nicolas Verreault, Laure Waridel and Marilyne Picard share their journey with Marina Orisini, ranging from exhaustion, diagnostic errance and moments of happiness.