wellbeing Archives - Pituitary Foundation

Prefer to watch rather than read? At the bottom of this page, you can access a recording of a talk on this topic delivered by Prof Pinkney.

Introduction

Conditions affecting the pituitary gland, and other endocrine glands, give rise to a notoriously wide range of symptoms. People ask endocrinologists all sorts of questions. Many concerns relate to impaired energy, stamina, and everyday quality-of-life. Over the years, one of the commonest concerns I have heard is about weight gain. I’m asked whether this has resulted from the underlying endocrine condition or perhaps the medicines that I have prescribed!

The majority of diseases affecting the pituitary gland have some impact on weight, such as Cushing’s disease and the hormone deficiency states of hypopituitarism. However, weight gain from pituitary disease is usually relatively modest. However, one group of conditions that stand out as causing more substantial weight gain are those that affect the hypothalamus. These can be primary diseases of the pituitary, or other disorders of the hypothalamus such as tumours. The hypothalamus is an area of the brain that plays an important role in the control of appetite and body weight, and when disturbed through disease processes, substantial weight gain is a relatively common result.

Unfortunately, in a world where two thirds of people are overweight, and over one quarter are obese anyway, it is not surprising that many people with pituitary conditions are overweight or obese, not primarily as a result of the pituitary condition, rather for all the many other common reasons that we gain weight. Some people are more predisposed from a young age, as a result of their genes, but also the behaviours and habits that have been learned from parents, or that arise in the home environment. Gradual weight gain often results when the diet is out of balance, often with excessive food portions, sometimes poor food choices, and frequently as a result of eating when not hungry, as in situations of stress, emotion or boredom. Having said this, most people find it very difficult to control body weight in a world where many of us are relatively inactive, and highly processed foods are major components in most people’s diets.

Weight control - what are the options?

Whenever I am asked for help with weight loss, it is important to understand the likely causes. I first consider the possible contribution to weight gain of the underlying endocrine disease, any associated abnormalities of hormone levels, and whether adjustment of endocrine treatment is necessary. Sometimes this is the case, although with weight gain in most endocrine disease being relatively modest, it is always necessary to consider the many other common factors that usually lead to weight gain in everyday life. At our centre we also run a large weight management service for people with more severe obesity, and it turns out that endocrine factors as causes of severe obesity are relatively rare. Whereas it is all of the other common factors related to day-to-day dietary behaviour and physical activity that are usually the more significant factors. These factors always have to be considered, even if there has been an endocrine contribution to weight gain.

A variety of different treatments can be used to bring about weight loss. For people who are overweight, or at lower levels of obesity, it is usually possible to achieve significant weight loss through relatively simple modifications of day-to-day lifestyle. Undoubtedly, this requires commitment, and to maintain long-term changes, but this is the traditional cornerstone of weight management, and without commitment to this principle treatments are often ineffective. Another approach, that can be combined with behavioural and lifestyle change, is drug treatment. For many years the available drug treatments for weight loss were not particularly effective, but now there is a new generation of drugs that are significantly more effective and offer the possibility of more substantial weight loss. Not surprisingly, there is now huge interest in these new treatments.

New drugs - new treatment options for weight loss?

The two new medicines available for weight loss are Wegovy (Semaglutide) and Mounjaro (Tirzepatide). Availability of Wegovy was limited throughout 2024 due to supply problems, and it was not widely available in the NHS. Mounjaro has been reviewed by NICE and it is expected soon to be available for use in the NHS. Perhaps the main question about these medicines is whether and how they can help people to achieve and maintain long-term weight loss, because the clinical trials have shown that most weight is usually re-gained within one year of stopping treatment. If this happens in clinical practice, this would be demoralising, probably not a good use of money, and repeated cycles of weight loss and regain may also be harmful for health. The NHS will be expected to follow NICE guidance on the use of these drugs, both in terms of who is eligible for treatment, and the need to stop treatment in people for whom it is proving ineffective and not achieving weight loss.

How can I try drug treatment for weight loss?

This would require advice from your GP or endocrinologist. Currently, access to treatment varies, and in many areas remains limited. At present the NHS use of Wegovy is restricted to those with more severe obesity (body mass index of greater than 35), accompanied by one or more weight-related common health problems. Although endocrine diseases often cause some degree of weight gain, the question will be therefore whether that weight gain has caused other health problems such as diabetes or high blood pressure. Accordingly, you would need to have a medical assessment of eligibility for treatment. Currently this drug is only to be prescribed from specialist weight management clinics and for a maximum period of 2 years. Mounjaro will also begin to become available in 2025, also for those with above BMI 35, with other weight related health problems. It seems likely that Mounjaro will prove somewhat more effective than Wegovy for weight loss, although that is not to say that Wegovy is necessarily an inferior choice for many people, depending on the amount of weight loss that is sought. Mounjaro can already be prescribed by GPs as a treatment for diabetes, and NICE will be recommending that GPs will also be able to prescribe this drug for weight loss, without any limit on duration.

Why is access to drug treatment currently limited?

A major challenge for the NHS is that the demand for these new drugs is so high that it is neither possible for the country to afford the cost of the drugs if they are to be given to everybody who is eligible, nor does the NHS have sufficient staff and capacity to see, assess and monitor the treatment of so many people. This is a global challenge, and not just one for the UK. Accordingly, in the NHS it is going to be recommended that treatments are made available with the gradual rollout over the next few years. It is envisaged that the first group of people to be eligible will be those with serious and urgent weight-related health problems, such as needing urgent treatment for life-threatening conditions, such as heart surgery or a kidney transplant. After this initial rollout, which is expected to take about three years, a larger group of people with BMI over 35 and significant weight-related health issues such as diabetes, high blood pressure, and the range of other conditions, will become eligible for treatment. What this means is that most people with endocrine diseases, whether or not these have contributed to weight gain, are not likely to be eligible for treatment in the near future. The main exceptions are likely to be for people who also have other serious weight-related health problems. Therefore, potential eligibility for treatment would be considered by GPs in the first instance. It is also worth appreciating that many GPs currently have little capacity to begin assessing and treating obesity, but it is hoped that this will change in the years ahead with more investment in these services. There is also some variation around the country in eligibility and availability of drug treatment. Most areas of the UK currently have relatively little availability, although it is hoped that this inequality will begin to improve.

Should I purchase drug treatment privately?

The drugs can be purchased privately, and there are a range of commercial weight management services that are able to assess obesity and where appropriate start treatment. Over the past two years this has been the main way that people have been able to access these drugs, and this remains one good option. Clearly the full costs of treatment have to be borne, and for many people this is not necessarily straightforward, although on the other hand many people make the choice to prioritise weight loss over some of their other expenditure. If treatment is purchased privately, as with NHS treatment, a key issue for consideration is what happens after treatment stops, and whether it will be possible to maintain dietary and lifestyle changes that will perpetuate the weight loss that has been achieved.

What side effects can be expected?

There is no reason to expect that patients with pituitary diseases will be any more at risk of side effects. Most common effects of this class of drug are gastrointestinal, such as nausea, vomiting, tummy pain, diarrhoea and constipation. These affect many people in the early stages of treatment, but usually subside. However. they can persist for some people and lead to stopping treatment. The main potentially serious side effect that has received a lot of discussion is pancreatitis, and while there is still some uncertainty about the cause of this, it is currently considered that this is usually caused by gallstones resulting from weight loss, rather than the drug itself. All in all, this family of drugs look to be relatively safe and well tolerated, and appears to represent a significant step forward in weight loss treatment.

Key points

Whether or not you are eligible and suitable for drug treatment requires a medical assessment. This is especially the case for people with pituitary disease, who have more complex medical histories and treatment needs. An endocrinologist may confirm your eligibility and suitability but at present might not be able to prescribe the treatment for you. This may vary locally

If you are thinking of accessing drug treatment privately, remember that the prescribing doctor will not have access to your medical records. People with pituitary diseases usually have complex medical histories, hormonal disturbances, and are often taking many different treatments. For this reason, it is best to discuss this first with your NHS doctors rather than going straight to a private provider

Drug treatment is not necessarily the best option for all people. Some may be better off considering other treatments such as bariatric surgery. In order to assess the available options and to choose between them it is usually necessary to be referred to a specialist weight management clinic

If drug treatment for weight loss is commenced, it should be used in conjunction with a programme of dietary change and increased physical activity, aiming to bring about and maintain long-term lifestyle changes. Drug treatment alone is not a quick fix. Without commitment, most people experience gradual weight regain after treatment is stopped. The long-term effects of treatment are not currently well understood, or whether long-term treatment is necessary in order to avoid weight regain

Professor Jonathon Pinkney recently delivered an online talk discussing weight management and options for treatment. The recording of this talk is available below.

YouTube

Introductory idea: The 'dance of the everyday'

Psychology tells us that most of what we do each day is done by rote or habit, without us really having to think much about it. Something I call the ‘dance of the everyday’. Just as in a dance, we must learn the routine and how it fits with the pattern of the music and, if we have one, how our family behaves (their strengths and weaknesses), so in life.

A pituitary condition can disrupt the rhythms of life, imposing a new order that can be difficult to adjust to. The disruptions can be so significant that the person with the condition can end up feeling alienated and confused by the changes they’re experiencing, misunderstood and disbelieved by others, leading to the loneliness that is social isolation. How does someone end up there, and what can be done about it?

The difficulties of diagnosis

Some of the problems could be said to start from diagnosis. It can be stressful, shocking and traumatic to be told that you have a brain tumour. Pituitary tumours are mostly benign (i.e., non-cancerous), but you may not know that when your diagnosis is first communicated to you.

Say ‘tumour’ to most people and they will assume they have cancer. With the pituitary being in the brain, being told you have a pituitary condition can conjure up some very scary mental images for people. For all that doctors aim to be very careful in how they provide the diagnosis to patients, it’s inevitable that there are going to be some people who end up feeling shocked and, possibly, traumatised. Stress is highly communicable; as humans we’re wired to pay attention when other people are stressed, because if something is affecting them it might have implications for us too, so any shock and trauma is likely to ripple through family and friends.

When you’ve experienced something traumatic and stressful, it can really help to be able to talk to others who understand what’s happened to you. Judith L Herman in Trauma and Recovery talks about the importance of community in helping people to recover from traumatic experiences. On page 101, she observes that,

‘In ordinary bereavement, numerous social rituals contain and support the mourner … By contrast, no custom or common ritual recognizes the mourning that follows traumatic life events.’

On the following page she goes on to say:

‘Sharing the traumatic experience with others is a precondition for the restitution of a sense of a meaningful world. In this process, the survivor seeks assistance not only from those closest to her but also from the wider community. The response of the community has a powerful influence on the ultimate resolution of the trauma. Restoration of the breach between the traumatized person and the community depends, first, upon public acknowledgement of the traumatic event, and, second, upon some form of community action.’

Part of the problem with pituitary conditions is that they’re not easily understood by others. Unlike cancer, which most people will have some knowledge of these days, most people probably haven’t heard of the pituitary, and won’t know what it does, how important it is, or that there’s a set of diseases associated with it that can be far-reaching in their effects. Some healthcare professionals take the idea of patient-centred care to mean that they only ever talk to the patient, but someone who is shocked and stressed can’t take in information properly. So, a patient’s understanding about their condition and what’s going to happen to them next might be quite limited in the early days.

For conditions as complex as pituitary conditions, this is not good. Patients face a gamut of different tests and from early in the process, pituitary patients need to be working towards becoming experts in their condition. That’s a lot to take on, and being pointed to The Pituitary Foundation where you can find out more information about what’s happening to you would be very helpful, but unfortunately far from being directed towards The Foundation, lots of people are left to stumble over it themselves.

Chronic conditions and 'uncertainty'

As a species we’re very good with cyclic change – we’re used to the sun coming up and going down, getting ill and getting better again. Even with cancer these days, we’re used to the idea that things are curable albeit after some gruelling treatments and we expect those who survive to get back to pretty much how they were before. And that goes double for common illnesses such as colds and flu and the aftermath of accidents resulting in broken bones where the treatments are much less demanding on the patient. But, a pituitary condition is a long-term health condition that can’t be cured, it can only be treated. The idea that someone might be so affected by their condition that the outcome is uncertain and ‘getting better’ might mean that their condition is ameliorated by drugs but that they can’t get back to normal functioning can be somewhat mind-bending for both the patients and their family, friends and wider community.

Humans aren’t good with uncertainty. It’s much easier to support someone through something if you know how long it’s going to last for and what to expect along the way. Pituitary conditions can take people into unknown territory. The conditions and their treatments can change how someone looks, as well as how they react and respond to things. Some people will end up with crushing fatigue that limits what they can physically do and brain fog that affects what they can think about. Pituitary patients can be shocked and surprised anew when confronted by reactions that they don’t recognise in themselves. They can start to wonder if they’re going mad on top of everything else they’re dealing with. Their family and friends can find it very confusing and difficult to understand too.

Adjusting to uncertain situations

We’re used to the idea that being ill is a consistent state, the idea that someone might have a condition that fluctuates such that what they can do in the morning is different to what they can manage to do later in the day, and that that can shift and change from day to day is bewildering and confusing for all concerned. When someone is ill with flu it can be easier to shift from the ‘dance of the everyday’ where everyone in the household does their usual thing, to the family dancing attendance on the person who isn’t well.

But the timescales involved in pituitary conditions can leave family members wondering how long they might have to dance attendance for. The uncertainty around what support is needed and for how long might not be known by the patient or their family and that can put tremendous pressure on how the family functions. It’s very hard to be disconnected from yourself and your family, thrown out of all your everyday routines and habits and methods of engagement and profoundly unsure about how long that situation will last. Death is straightforward – the person isn’t there anymore – but someone who is profoundly changed but still present; that’s quite a conundrum for all concerned.

'Someone who is profoundly changed but still present; that's quite a conundrum for all concerned.'

How does 'community' play a role in this?

The Pituitary Foundation offers a community that genuinely understands what it’s like to live with a pituitary condition. They have a lot of useful information as well as other people to talk to. Some of those people are healthcare professionals whom you can ask for advice about how to understand what’s happening to you and what might be next on your treatment journey. But there are other people who’ve been on this journey before you who will also have insights to share.

here’s a tremendous psychological relief that comes with knowing that it’s not just you that finds it difficult to understand and to live with. And that support and information is there for family and friends too. In dance terms, it reminds me of learning a complex country dance where the people who already know the dance explain it to you in ways you can understand, then hold your hand as you gradually learn what’s required of you.

Maintaining good wellbeing with a long-term health condition can be challenging. Having a pituitary condition can impact all areas of your life and make it difficult to stay healthy whilst navigating complex things like relationships, conflict and communication.

In this blog post, Dr Sue Jackson (Chartered Psychologist) explores the role of assertiveness in healthy communication and wellbeing, and the ways people with chronic health conditions can sometimes struggle with this. A video of Dr Jackson's talk on this topic is also available at the bottom of this page.

The art of assertiveness

Lots of people confuse confidence with self-esteem, or assertiveness (I know I did when I was younger). While it is closely related to both of those things, it isn’t the same thing.

Confidence is the extent to which we trust ourselves, particularly our abilities, personal qualities and judgements. It’s about both what we do and how we feel about what we do, particularly the extent to which we are comfortable with the various skills we have. Assertiveness is a social skill that relies heavily on effective communication. To be assertive means learning to honestly express our opinions, feelings, attitudes, and rights, without feeling anxiety and fear, while at the same time acknowledging other people’s rights, thoughts and wishes.

Assertiveness is a communication skill (so it’s related to confidence), but it’s based on how well we understand our needs and boundaries (hence its relation to self-esteem). It’s the art of treating others with the same love and respect that you would like to have extended to yourself. It’s not about forcing your views on other people or being aggressive towards others. It is about taking responsibility for the choices that you make and the consequences that follow from those choices when communicating with others. Assertiveness works best when you’re clear about what outcome you would like to achieve from the conversation/situation you find yourself in.

Assertiveness issues for people with pituitary conditions

I think people with pituitary conditions can struggle being assertive for several reasons. There are a lot of pituitary conditions and they can be complicated to manage and live with. Quite often family, friends and colleagues may not have heard of either the pituitary gland or the various conditions that can be associated with it before and therefore not understand what it means when you try to explain your condition and its management to them. Pituitary patients often say that healthcare professionals don’t provide them with good information to pass onto others, which doesn’t help. Trying to explain something complicated when the condition you have causes fatigue, brain fog, problems with memory and concentration is a tall order. It can be stressful and difficult to ask for help and understanding especially with fluctuating symptoms. You can get pushback – "You managed alright yesterday" – because as a society we’re encouraged to have a work ethic that means you don’t stop for a little thing like being unwell. Other people can think that they know better than you, or they don’t want to believe you because if they did then they’d have to do something about it and right now they may not be able to.

Being assertive

The Bill of Assertive Rights was first suggested by Manuel J Smith in his 1985 book When I say no, I feel guilty. The bill comprises a useful list of the different ways in which we’re all allowed to be assertive. Some of them (for example, the right to privacy) are easier than some others (for example, the right to be heard), which depends on gaining the cooperation of others. There are some (such as the right to be treated with respect as a capable and equal human being) that can easily be infringed by others when we’re not well, making it hard for us to retain our voice, independence and agency. I think some of those problems stem from the fact that, as a society, we don’t have a good understanding of what it means to live with a chronic health condition.

We’re used to people having colds where we expect them to comply with what’s been dubbed ‘the sick role’. The key characteristics of the sick role – having symptoms that others recognise, being exempted from daily activities, seeking professional help where indicated, and wanting to get better – are totally appropriate for short-term bouts of illness. However, with chronic conditions there is no ‘getting better’; we’re in the realms of treatment and not cure and while some exemptions from activities of daily living can be appropriate for some people with pituitary conditions some of the time, it’s not going to be appropriate for all pituitary patients most of the time.

"With chronic conditions there is no 'getting better'; we're in the realms of treatment and not sure, and while some exemptions from daily living can be appropriate for some people with pituitary conditions some of the time, it's not going to be appropriate for all pituitary patients, most of the time."

Practice makes perfect

Assertiveness is a communication skill that takes practice to get right because it doesn’t always go according to plan the first few times you try it. I’ve seen it taught very poorly on some assertiveness training courses where people are basically being told how to be verbally aggressive towards others. One of the key aspects of assertiveness that often gets overlooked on such courses is that it’s about maintaining functional relationships. For example, you need to take responsibility for how you are feeling and be able to accept and hear that someone else may be feeling differently to you. You need to accept that even having heard you, the other person may not be able to respond to your communication or meet your needs right now.

Communicating effectively with others can be complicated and tiring. You may need to check that the other person understands what you are saying, which means you might need them to repeat back to you what it is they think you are trying to communicate. You can then clarify any bits they seem to be misunderstanding. Remember – we each use words in different ways and we tend to only half-listen to other people. Most of us during conversations are thinking about what we’re going to say in reply to what we’ve just heard rather than properly paying attention to what we’re being told. It can be tempting to up the ante by using exaggerated or colourful language, but that merely serves to stress both you and the individual that you are trying to talk to. We often spend time describing the things that are upsetting us, which is understandable if we want someone to understand where we are coming from, but if we only dwell on what we don’t want it can lead to confusion. The other person might struggle to see how they can help you, so using positive statements identifying what it is that you would like to see as an outcome can be useful. But doing that means you need to have prepared yourself beforehand to understand what a range of good outcomes might look like for you.

Assertiveness and boundaries in a relationship

If assertiveness is about communicating effectively within a relationship then how we see each other as humans plays a part in that communication. If we take a two-person example where two people both see themselves as being OK, then the communication is also likely to be OK. But where one person sees themselves as being OK and the other person as being much less than OK, problems can arise. The person who sees themselves as being OK can become quite critical, while the person who feels that they’re not OK can find themselves becoming defensive and blocked from communicating honestly with the other person. In situations like this, having some boundaries can be helpful.

There is always going to be some people in our lives who, for whatever reason, are struggling to see us as we’d like them to. It might not just be about health or illness issues, it can also be because others see us as performing a particular role in their life (for example, you’re always the helper) and they struggle to see us in any other way (right now, you’re the one that needs help). Having some boundaries in some areas of our life can be very helpful. There is a myth that having boundaries makes you mean and selfish but that’s not the case at all. Creating and understanding where our boundaries are is an important part of self-care. It’s easy to get sucked into spending time and energy doing things for entitled others but when you have a chronic health condition, it’s important to avoid over-giving and over-functioning. Doing more than is required will make you unwell and creates confusion for you and others about what your sensible and safe limits are.

Other ways of being assertive

There are some other things that also help with being assertive. For example, having or fostering an identity as a survivor rather than a victim and believing that there are things that we can do to help us to manage our feelings and to cope. It may not be easy or obvious what those things are though, which means lots of mistakes can be made which we will need to learn to forgive ourselves and others for. It can be a long process full of problems and that can make people feel downhearted. This is where the attitude of gratitude comes in – the ability to be able to recognise and appreciate what I call ‘the little gleams of sunshine’ that still exist and that you can still enjoy. Something as simple as watching a cat wash his ears, or seeing the sunlight sparkling through raindrops, or enjoying the feel of the support of your favourite cushion on the sofa.

Sources of support

Being willing to seek help with something as challenging to live with as a pituitary condition is a sign of strength, not weakness. It’s common to need support to work on your assertiveness, if for no other reason than to get some ideas about things you can try to help explain your condition to others. Although you might also want to discuss how to deal with tricky people in your life and whether and how to set some boundaries to help you with your self-care. So it might help to 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.

Watch this talk below

YouTube

Life with a pituitary condition can undermine your relationship with yourself, leading to low self-esteem, but what does that mean? What is self-esteem?

In this blog post, Dr Sue Jackson (Chartered Psychologist) explores self-esteem and the ways it can be impacted by a chronic health condition.

What is self-esteem?

According to Rosenberg (the author of one of the most used questionnaires designed to measure self-esteem), it is the word we use to describe and/or summarise our attitude towards ourselves. That attitude can be either positive or negative. I would add that it goes to the heart of what it means to be a person – the central beliefs we have about ourselves and the kind of person we each think we are or feel ourselves to be.

Definitions and descriptions of self-esteem

Before they started researching it, psychologists used to think that most people had good self-esteem. It came as something of a surprise to find that people with good, stable self-esteem (i.e., those who see themselves as good and worthwhile individuals pretty much all the time) are quite rare. For ease of reference, and because there are some misconceptions about what good self-esteem looks like, here’s a description. People with good, stable self-esteem are generally very comfortable with themselves, which makes them easy to be around, not least because you know where you stand with them. They love and accept themselves as they are, strengths and weaknesses included, although this doesn’t mean that they have an inflated opinion of themselves. They’re aware that they are human, that they make mistakes and get things wrong. They can accept constructive criticism without seeing it as a personal insult. Instead, they see it as information they can use to improve. They don’t feel the need to prove anything, which leaves them open to letting themselves have experiences from which they can learn without worrying what other people might think – they are simply willing to try things. They respect themselves, whilst also respecting others.

Over time it has become clear there are three different kinds of self-esteem:

Good, stable self-esteem
Chronically low self-esteem
Variable or fluctuating self-esteem

Most people seem to have a good understanding of what poor self-esteem can be like and, when questioned about it, generally describe someone with negative and critical thoughts about themselves, troubled by uncertainty and self-doubt. That said, lots of people confuse self-esteem with confidence and assertiveness (I know I did when I was younger) and while it is closely related to both of those things, it isn’t the same thing.

Assertiveness is a social skill that relies heavily on effective communication. To be assertive means learning to honestly express your opinions, feelings, attitudes and rights, without feeling anxiety and fear, while at the same time acknowledging other people’s rights, thoughts and wishes. With a definition like that, it is easy to see why people think assertiveness and self-esteem are closely linked.

Meanwhile, confidence is the extent to which you are comfortable with the various skills you have. For example, there are some things that you are so confident at doing that you don’t even think about them as being skills anymore unless you must relearn them for some reason (for example, walking or making a drink). There are other skills where you are not so sure of your abilities and so you tend to think about them more, especially as regards your performance of them. For example, I’d say that I’m an OK cook but I’m aware that there’s a lot that I still don’t know how to do. Quite often people confuse what they can or can’t do with who they are and how they feel about themselves, which leads to fluctuating self-esteem. As an example, when they’re doing well they feel fine with themselves but if they make a mistake in performing a task, particularly if someone else points that out to them publicly, it can really dent their confidence. This can then lead to them having very self-critical thoughts and feeling bad about themselves.

Manifestations of low self-esteem

While most people find it very easy to describe low self-esteem, they may not be aware that it can manifest itself in several ways. There are those with low self-esteem who may wonder what use they are and who can end up feeling that the world would be better off without them in it. They can lack a sense of having any value as a person at all, feeling that others do not like them, love them or care about them. Despite this, they may be acutely sensitive to the needs of others and may put these needs above their own. Some people may go so far as to believe that the only time their presence is acceptable to other people is when they’re doing things for others – the idea of turning up empty-handed to someone else’s house for a cup of tea and a chat leaves them in a cold sweat. They may worry that they are unable to do things right or feel anxious if they are prevented from doing things for others, for example, because of ill-health.

Some people with low self-esteem dislike themselves so much it leads them to lash out and hurt others. Someone who is routinely very critical of others, who rarely has a good word to say about anyone, who always points out the errors you make but who is seemingly unable to give you any praise is quite possibly acting out of low self-esteem. Bullies quite often have low self-esteem and/or are very scared of other people. Their behaviour is an attempt to try and control others by cutting them down to size and keeping them off-balance.

Pituitary conditions and self-esteem

I think people with pituitary conditions can develop self-esteem problems partly because the various conditions, and their respective treatments, can change so much about what it means for them to be who they are. In short, some of the conditions cause changes to appearance and lots of the conditions cause problems with mood swings and emotional reactions. Many people may also struggle with fatigue and low energy, presenting them with difficult choices about what they can do, especially if the fatigue comes with brain fog and memory problems. All of this can leave someone feeling lost, unsure, worthless, hopeless and miserable.

Living with someone with a pituitary condition can trigger self-esteem issues for their support network too. Family members and friends can be surprised by their own reactions to living with someone with a long-term condition. It can be confusing, frustrating, and difficult – people report being surprised at how uncertain, worried, angry, and sad they feel. If this leads to arguments and unkind things being said and done, the shame and guilt can lead you to wonder just what kind of a person you really are.

Improving self-esteem

I would argue that the key to improving self-esteem is practising self-respect. There are many ways to do this so I usually suggest you pick one that looks the easiest to try and work on. For example, you could learn to listen to yourself – your opinions and emotions matter. They’re an important source of information about yourself and the world around you. People with low self-esteem often don’t treat themselves very well and the language they use towards themselves when they make mistakes is often foul and hurtful. Learning to treat yourself with patience and understanding could be an important first step for some people. Being polite towards ourselves is important for all of us, as research shows that the bad language and nasty names we employ towards ourselves cause stress and anxiety.

Some people might find it easier to start with attending to their physical needs as part of improving their self-esteem. This could look like taking a break when you're feeling tired, having a drink when you're feeling thirsty or looking after your nutritional needs appropriately.

If your self-esteem is very poor, it can feel terrifying to start to treat yourself with dignity and respect. You may have a very real fear that if certain people find out that you’re seeking to improve yourself they will slap you down. That fear can be so powerful that it can lead you to feel that it’s both easier and safer to stay as you are. To those people I would say two things. Firstly, it’s important to work on having some boundaries in your mind, such that you understand what is genuinely about you and what is someone else’s issue. And secondly, your relationship with yourself is allowed to be private. You’re allowed to talk to yourself kindly, to be loving and gentle towards yourself without telling anyone else that that’s what you’re doing. I often refer to improving self-esteem as something of a Secret Squirrel task, because it can be difficult for people to acknowledge or discuss with others.

Your relationship with yourself is allowed to be private. You're allowed to talk to yourself kindly; to be loving and gentle towards yourself without telling anyone else that that's what you are doing.

Sources of support

The relationship you have with yourself is arguably the only one that you will have that will last your whole life. If it’s a troubled relationship, it’s worth doing some work on it to try and improve it even though for lots of us that’s much easier said than done. To try and help, The Pituitary Foundation has a booklet called Relationships & Communication that starts out considering the relationship you have with yourself and how to improve, it if it isn’t good, before moving on to addressing relationships with other people.

It’s not unusual to need support to work on your self-esteem (I know I did when I was younger), so 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.

Learn more about how to communicate well with your family and friends when it comes to ongoing and difficult health problems, in this article written by Dr Sue Jackson. A corresponding video of her talk on this topic can be found below.

Communicating With Your Loved Ones

Written by Dr Sue Jackson

Lots of us take our ability to communicate for granted. It might only be when you start having problems in getting your message across to someone else that you start to think there might be more to it than simply putting words in the right order. Communication difficulties, such as being misunderstood or disbelieved, are not uncommon for people with chronic health conditions. This article thinks about why that might be and looks at some things that might help.

The basics of communication

Communication is a skill that enables us to be able to relate to other people effectively. We need to be able to communicate to share ideas, explain to others what we need or want, to work out differences and areas of conflict, and to express our feelings. Since it’s a skill, it relates to self-confidence (in this case how comfortable we feel in talking about ourselves to other people) and because we’re talking about what we want and/or need (or feelings and such), communication also relies on assertiveness. Confidence can be thought of as the extent to which we trust ourselves, particularly our abilities, personal qualities and judgements. It’s about both what we do and how we feel about what we do, particularly the extent to which we are comfortable with the various skills we each have. Assertiveness is a social skill that relies heavily on effective communication. To be assertive means learning to honestly express our opinions, feelings, attitudes, and rights, without feeling anxiety and fear, while at the same time acknowledging other people’s rights, thoughts and wishes. A tricky line to walk and the subject of another article.

Communication isn’t just about what we say, which might come as something of a relief to those of us who aren’t so good with words. In fact, at just 7%, research suggests that the words we say make up the smallest part of our communications with each other. By far the largest part of our communication (60%, or getting on for two-thirds) is made up of our body language. The remaining third is the tone of voice we’re employing, whether that’s kind and gentle, sarcastic and cutting, or angry and domineering.

In most normal conversations, we take turns (although there are a few people who don’t seem to understand that a conversation should involve more than one person’s voice!). However, often we don’t really 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, or (if we get a bit over-eager) we’ll jump on the end of their sentence before they’ve stopped speaking.

Acute versus chronic health conditions

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 illnesses for there not to be much to discuss 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.

A chronic health condition is very different and could be described, in relation to pituitary conditions, as 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 diagnoses and effective cures followed by a return to normal functioning for the affected person, chronic conditions involve treatments rather than cures, and those treatments may not return the person to who and how they were before they were diagnosed. Added to which, the process of diagnosis may well have taken years.

A chronic condition can require close monitoring and regular adjustments to a medical regimen. 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 progressing. While people often describe it as battling or fighting, there are times when a chronic health condition is something to be managed and worked with rather than something to be fought with. While the process of diagnosis and treatment might be straightforward for some, for others their condition can keep recurring and instead of being straightforward, it feels like they’re trapped inside a revolving door of symptoms, diagnostics and treatments.

Communicating your condition to others

Understanding how to live with a chronic health condition isn’t necessarily straightforward whether you’re the patient or not. There’s potentially a lot to find out about and deal with. What you need to communicate to others may well be different as you move through the different stages of your condition. Take your time to prepare what you’re wanting to achieve from talking to others. Dwelling on what you don’t want can lead to confusion, so you might want to think about what would be helpful instead. You might also need to think about the following three things, too:

Are you asking to be cared about and understood? (For example, you’re looking for expressions of love and support but you’re not looking for any ‘fixes’)
Are you asking to be cared for and helped? If so, what is that would make a difference?
Are you asking for both of the above?

If possible, choose a time so that 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, as a consequence, 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 pace for a conversation.

You may need to check that the other person understands what you are saying, for example, you can ask them to repeat back to you what it is they think you are trying to communicate. You can then clarify any bits they seem to be misunderstanding. Remember – we each use words in different ways. A good example is when a doctor says you’ll be better after the operation, but what they might mean by that (the tumour will be gone and you’ll move to the next stage of your treatment) and what you hear (you’ll be back to how you were before this started) may be two different things.

Communicating assertively

Mind your language – you might think that exaggerating can help others to understand the size and scale of what you’re dealing with but it does not help. It 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.

There are multiple different aspects involved in coming to terms with living with a chronic condition, including shock, various emotional reactions (including grieving) and various cognitive tasks such as understanding the change, until all those involved reach a point of understanding and acceptance.

As far as the content of the communication goes, it helps if you take responsibility for how you are feeling and are able to hear and accept that someone else may be feeling differently to you. There are multiple different aspects involved in coming to terms with living with a chronic condition, including shock, various emotional reactions (including grieving) and various cognitive tasks such as understanding the change, until all those involved reach a point of understanding and acceptance. Patients don’t experience their illnesses in a neat and tidy order and neither do their friends and family. So, you can be having a conversation about your condition trying to understand the changes involved, while they might be shocked, or having some other emotional reaction or struggling to comprehend the change that your condition is going to mean for your shared life together.

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 that needs to be communicated it always ends up being about him and how he’s feeling. He means well, a lot of his reaction is because he gets stressed easily and he constantly worries about doing the wrong thing. But he’s obviously not the first person I’d be talking to about something where I need support. Indeed, he’s the kind of person where I would get one of our other friends to tell him our news, so I don’t have to deal with his emotional reaction. And no, that’s not cheating, it’s just sensible.

You need to accept that 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. 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 up 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. You need to be interested in what’s happening in the lives of the people in your life so your communications have some kind of balance. Additionally, we need to be able to be patient with each other and to forgive each other for the mistakes that are bound to be made along the way.

Sources of support

It’s not easy talking to others about having an unusual chronic condition – they may not understand or believe you and that can make you feel very alone. 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 them to others at work, school or in doctor’s appointments.

Recording of Dr Jackson's presentation

YouTube

One of my aims in life is to help people find words to describe what they’re experiencing and how they’re feeling. This blog post offers some, hopefully, useful words for those with pituitary conditions and their support networks along with some guidance on how to pronounce them for the trickier looking ones.

(Note on pronunciation – For the trickier words, I’ve broken them down into their various simpler sounds. You don’t pronounce the letters in brackets, they’re there to help you get the sound right. So, in the word inanition, below, where it says i(t) it’s telling you that you want the short ‘i’ sound from the word ‘it’.)

Inanition (Pronounced in-an- i(t)-shun): a lack of vigour, vitality, or enthusiasm due to a lack of nourishment be that social, physical, mental, or spiritual in nature. Inanition is a useful word to describe some of the limitations that living with a chronic health condition places on someone, as well as the impact of being a carer. If we take fatigue as an example (a commonly reported symptom of those with pituitary conditions as well as carers) it forces you to choose what you’re going to spend your energy on. People often report that they prioritise spending what little energy they have on work and home responsibilities, but this potentially leaves them with little or nothing left for socialising, hobbies or other meaningful activities and fun stuff thus leaving them starved of social contact, mental stimulation, and effective methods of relaxation and restoration. These various forms of starvation have an impact over and above the fatigue, and the ensuing lack of balance in our lives (you know what they say about all work and no play) leave people feeling flat with little or no enthusiasm and lacking interest in the world around them.

Immiseration (Pronounced (h)im-miz-err-ay-shun): defined by the Cambridge Dictionary as the act of making people (or a country or an organisation) poor. It’s unfortunately the case in this country that we no longer have a properly supportive welfare state. Coupled to which is an increasing tendency to blame people for getting ill and/or for not trying hard enough to get better. We’re all supposed to be dedicated to growing our country’s economy, but that isn’t matched by Government spending to improve life for the people who live here. Those with a pituitary condition aren’t to blame for getting their condition. It’s not uncommon for people with pituitary conditions to find that they need to change job because the long-term effects of their condition mean that they can no longer effectively do the job they were doing before, or they have to work reduced hours. Both of those can lead to reduction in income, and this can then mean having to move to a different part of town where the housing is less expensive. If you can’t afford to work then the current rates of financial support provided by the Government aren’t enough to enable even a basic standard of living, never mind a good quality of life. And since people with long-term conditions often incur extra expenses (such as paying for prescriptions, travelling to hospital appointments etc), having a chronic condition can very quickly push you into poverty. I like immiseration as a word because it acknowledges the misery that comes with not having enough resources to be able to live.

Apathy: a lack of interest, enthusiasm, or concern. You can have global apathy (i.e., no interest in anything at all, something that can be seen in people with some types of brain injury), or you can experience apathy in respect of one area of your life. For example, you might be so fed up at the way our politicians have been behaving, that you have no interest or enthusiasm for the upcoming elections. If you believe that your vote doesn’t count for anything, you might also think that it doesn’t really concern you either. There’s an interesting scientific paper from 2005 by Michael Weitzner, Steven Kanfer and Margaret Booth-Jones who described how their pituitary patients had apathy syndrome which they describe as a neurobiological illness, in other words, an illness caused by damage to the brain. Apathy is often misdiagnosed because its symptoms overlap considerably with those of depression (see drawing right). Based on anecdotal evidence, I’d say most people who describe a lack of interest, enthusiasm, or concern in respect to any or all aspects of their life are likely to be diagnosed with depression and offered anti-depressants.

Burnout: aphysical or mental collapse often caused by long term overwork or stress. It can also be described as the gradual erosion of a positive state of mind. Burnout is associated with an overwhelming feeling of emotional exhaustion of a sort that isn’t curable by resting. Burnt out people can often feel a sense of detachment, a feeling of dread or resentment at having to do things. Oddly to my mind, because it’s often caused by doing too much, it seems strange that burnout is often accompanied by a feeling of a lack of accomplishment. Burn out can lead to cognitive problems such as problems concentrating. I’ve included it here because it can occur in people with pituitary conditions who are valiantly trying to do all the things they would usually do in the face of their condition. It’s not a given that everyone with a pituitary condition faces problems in doing their usual activities, but some people are more affected by their condition than others. Our society these days puts great emphasis on the idea of working through or despite bouts of ill health. As a society we seem to be losing touch with the idea that resting is an important part of life, especially when we are not well. This societal pressure can cause people to push themselves to do things which can ultimately leave them so resource-depleted they burn out.

Ambiguous loss (pronounced: am-big-you-us): describes a loss that isn’t clear, usually the loss of a loved one. The person is alive, but they have changed so much that for themselves and for others they can seem like a different person. So, for example, a family member of someone with a pituitary condition might feel ambiguous loss if the person with the condition is different to how they used to be and it’s not clear if they’re ever going to return to how they were before the condition emerged. A person with a pituitary condition might experience ambiguous loss if they’re struggling to recognise themselves in how they’re respond to things. So, in essence, it’s something of a confusing state, where the person concerned is feeling that something is wrong, that a significant change has occurred, and it’s a change that leaves them feeling bereft in some way. Ambiguous loss goes to the heart of what it means to be human.

By Dr Sue Jackson

Sue is an Associate Lecturer at Plymouth University and an Independent chartered psychologist. She also works as a consultant for a variety of charities and pharmaceutical companies. Sue is a science writer and researcher working on a variety of projects round the UK.