Communicating with Loved Ones

Communicating about your condition with your loved ones

By Dr Sue Jackson – Psychologist

Communication difficulties which lead to being misunderstood or disbelieved are common for people with complex and (long-term) chronic health conditions such as those involving the pituitary gland. This article thinks about why that might be and looks at some things that might help.

In most ordinary conversations we take turns but we don’t properly listen to what the other person is saying. What most of us do is to mentally start preparing for what we’re going to say when they stop talking. You might think that communication about illness is just another ordinary kind of conversation, and if someone has a cold or some other acute problem like a broken leg, that’s probably true. We all have enough experience of common accidents and illnesses for there to be little worthy of discussion because we know what’s going to happen, both to the person with the illness and those of us who will be supporting and looking after them.

Complex long-term health conditions are different. They start with a series of events that kickstarts a process more akin to a marathon than a sprint that can last for months if not years, or indeed for the rest of your life. Unlike acute conditions where we’ve got used to quick diagnosis and effective cures, long-term conditions involve treatment rather than cure. For rare conditions the process of diagnosis may well take months or even years, and treatments may not return the person to how they were before they started getting symptoms.

Long-term health conditions can require close monitoring and regular adjustments to a medical regime. This may involve regular check-ups involving blood tests and scans, and patients may experience quite a lot of worries and concerns about what those results might say about how their condition is changing and/or progressing. While people often describe it as battling or fighting, there are times when a long-term health condition is something to be managed and worked with instead. And while the process of diagnosis and treatment might be straightforward for some, for others their condition can keep recurring to the point where it feels like they’re trapped inside a revolving door of symptoms, diagnostics and treatments.

Communicating with others

Few people have heard of the pituitary gland and most don’t know what it does. On top of that, other people may not understand that a pituitary condition can fluctuate day-by-day and over each 24 hours, so what’s possible for someone to do in the morning, may not be the same as what they can do in the evening. You can’t tell how someone is just by looking at them – you can be looking fine, but feeling grim. Having a pituitary condition can affect everything that it means for you to be human – not just physically but also psychologically including how you feel about yourself as a person.

On top of that meeting your health care needs can be complex and frustrating because of the way the NHS works. Lots of patients with pituitary conditions report having to become experts in their condition very quickly, not least because of problems in communicating with general health professionals such as GPs, practise nurses, paramedics and the doctors and nurses in A&E all of whom may lack experience in treating people with pituitary conditions. Added to which the specialist healthcare professionals may not be willing to talk to family members, so that leaves the bulk of the communication about what’s happening to the patients and that can be a hard thing to do when you’re still learning about it yourself and are feeling very unwell to boot.

It can be frightening and intimidating for family members to be told that they have to care for someone with a condition they don’t understand. Not only that, but they may be held responsible for keeping that person alive. If you’re untrained and unsupported with other responsibilities such as work or caring for children, it can feel terrifying and overwhelming. When someone is that poorly, we want (and have been brought up to expect) that properly trained health professionals will be doing the caring. It can be quite a shock to find out that the family is going to have to do it instead. As a species, we’ve evolved to identify and avoid such stressful situations, and that might be why some family members don’t want to hear about, and may struggle to deal with, the pituitary condition that their loved one has.

Asking for support

What you need to communicate to others may well change as you move through the different stages of symptom identification, diagnosis and treatment. It might help to think about the following as part of your preparation for talking to others:

  1. Are you asking to be cared about and understood? (You’re looking for expressions of love and support, but you’re not looking for any advice or ‘fixes’.)
  2. Are you asking to be cared for and helped? If so, what is that would make a difference?
  3. Are you asking for both above?

If possible, choose a time when everyone is in the best frame of mind for hearing what you have to say. I’m a lark (which means my energy is at its best first thing in the morning), while my husband is an owl (which means his energy is at its best later in the day). Conversations where we both need to concentrate are best done in the afternoon when our energy levels are more equal which lends itself to fewer misunderstandings and therefore less arguing. We also help make things less confrontational by sitting side-by-side or going for a walk. (Movement can be soothing and walking sets a gentle rhythm for a conversation.)

If you want to check that the other person understands you could ask them to repeat back to you what it is they think they heard you say. You can then clarify any bits they seem to be misunderstanding.  Even having heard you the other person may not be able to respond to your communication or meet your needs right now. They might need time to understand for themselves what it is you’ve told them. So, you might need several goes at communicating about your condition and the changes that it means for your life together. That can be frustrating; it can feel like you’re doing it wrong, or that the other person isn’t interested, isn’t trying hard enough and doesn’t really care about you. The other problem with breaking the conversation into small parts is that it can start to feel like it’s the only thing you ever talk about, and that’s not good for relationships either.

Communicating assertively

You might think that exaggerating will help others to understand the size and scale of what you’re dealing with, but unfortunately using dramatic language merely serves to stress both you and the individual that you are trying to talk to. Simple descriptions might be a bit boring and underwhelming, but they’re the way forward if you want someone to keep listening to you. Exaggerations and colourful descriptions can make other people feel overwhelmed and make them want to run away.

As far as the content of the communication goes, it helps if you take responsibility for how you are feeling and can hear and accept that someone else may be feeling differently to you. There’s a lot involved in coming to terms with living with a long term health condition, and the journey to understanding and acceptance for patients and their families is often messy and complicated. And it’s OK to choose who you tell – not everyone reacts well to difficult or challenging situations. I have a friend who is lovely, but whenever there is anything stressful or difficult to talk about the conversation always ends up being about him and how he’s feeling. He means well, but he gets stressed easily and he constantly worries about doing the wrong thing. So, he’s not the first person I’d be talking to about something where I need support.

Sources of support

It’s not easy talking to others about having a rare health condition – they may not understand or believe you and that can make you feel very lonely. It’s normal to need to talk to others about what you’re experiencing, but there can be lots of reasons why that feels too hard for your family and friends to deal with. You don’t have to be alone with it though, remember that the Pituitary Foundation has both telephone buddies and a helpline you can call, and they now have a new counselling service run by Rareminds. Additionally, the Pituitary Foundation has information about conditions that can help you to prepare to explain about your condition at work, at school or in doctor’s appointments.