The best journeys are generally those made in the company of somebody else and not alone, and the same is certainly true of the potentially long and arduous journey of a major illness. Whether it is you who are ill or somebody you are caring for , making your illness a “we” relationship with somebody else can transform the experience, provide you with hope when you are feeling down, and help you mobilise all your healing resources. In fact, having a companion with you who is prepared to accompany you through thick and thin, who can also speak up for you when you cannot find the words yourself, is probably the single most beneficial thing you can do to help yourself when you are ill.
Be bold when asking somebody for help or offer to give it! If you are the one with the serious illness, from the outset try to find somebody close to you who you trust, and you think is prepared to go with you to all your appointments and consultations with healthcare professionals. If you want to talk about the situation with your chosen companion before the appointment and what you are expecting to happen this can be a good idea too. If you have written down your most important questions, you can also perhaps ask them to write down the answers for you as best they understand them during the appointment. Tell them to write down anything else the doctors or nurses are saying if you think it is important, and give them permission to ask for more explanation if something does not make sense to them.
These trusted health companions are often called a health advocate, and I think it is a useful way of describing their very special role in the “we” relationship. An advocate may be your partner, or a family member or close friend, but they may equally be somebody else who you do not know so well, but is able and prepared to take on the role. They can be adults, sons or daughters (if over 16), siblings, parents, as well as friends and even, perhaps, professionals. If you want to ask somebody to be your advocate, the best advice is to trust your intuition and simply go ahead and ask. The prime role of an advocate is to support you. Much of this is practical:
- Putting out the call for help among your family and friends and coordinating offers
- Taking care of the home front, and making sure family needs are not forgotten
- Speaking with healthcare professionals when you want
- Writing down your medical history as it progresses
- Helping to plan and organize everything
- Keeping your notebook of names, dates and places up to date
- Setting goals and rewards on your road to recovery
A health advocate will also provide healing and hope. This does not require special skills, it is simply about them retaining our humanity at all times, being relentlessly upbeat and keeping a great sense of humour. If you are ill, these qualities will help you cultivate yours and lift your mood. Having humanity also means that there is no such thing as giving up in their vocabulary. Health advocates can give you courage and will not run away from the challenges, even when you are feeling like doing so. Above all they will always put your wishes first.