Do's and Don't's for friends and family of Cushing's patients
Don't:
- Trivialise how we feel - telling us to "get over it" makes us feel like you don't appreciate how difficult things are.
- Compare our situation to something/anything - it is good when you try and put yourself in our shoes, but comparing our situation to something you encounter in your every day life only demeans us. For example, comparing the tumour induced headaches us Cushies get to being hungover is downright offensive!
- Think we are exaggerating - it is true that some people tend to be dramatic and make things out to be much worse than they are but all the Cushing's people I've come in contact with, including myself, we actually have a tendency to down play how terrible we truly feel. So used to not being believed by doctors or others, we tend to internalise our pain and rarely speak up and ask for help. So if we tell you that we're hurting and need you, we really mean it.
- Forget who we are/were - remember that when we suffer from Cushing's, it changes us but only as long as we are sick. If we have always been active and positive but because of the disease no longer have this energy, don't think that we are all of a sudden lazy people. Cushing's doesn't change us fundamentally, it only affects our abilities for a while. Underneath it all we are still the same person we used to be and in fact we long to be that person again so don't treat us completely differently.
- Forget that we are sick - this may sound like a contradiction to the earlier point but it isn't. Although it is important that you do not treat us differently, you must still bear in mind that we are sick and have different limitations now. So if we used to be super sporty but can barely do anything now, do not suggest a 20 mile hike. But don't automatically rule out all possibilities of exercise, try and be understanding and see if you can encourage us to do some form of activity that we can still enjoy.
Do:
- Help with everyday chores - sounds like a silly thing but by helping doing such trivial things as hoovering, cooking dinner etc, you are actually being a life saver.
- Be patient with us - we realise that we can be difficult to deal with and that it's hard for you when you don't fully understand what we're going through, but please bear with us.
- Keep us smiling - without making a joke of things, help us keep it light. Sometimes we get too serious and focused on what's going wrong that we need help seeing the good side of life. You can help us navigate through the depression and isolation.
- Help us raise awareness - we understand that this disease doesn't affect you directly but as concerned friends and family you are in the best position to witness first hand the struggles we go through. Help us with others so that we may all benefit from further support and understanding.
- Just be there - sometimes, just being physically present is a great form of support. I am so grateful for the times my bestie spent waiting with me for an appointment and the hours/days my mother spent by my bedside when I was recovering from surgery. Just having them there was so comforting that even without words I felt loved and supported.
