If you have a pituitary condition, it really is OK not to be OK. Pituitary conditions are so complex, they’re not easily understood even by doctors and there are wide ranging effects from both the various conditions and their treatments. They can affect everything it means to be human, from how we look, to how we think, feel, react and respond to things in our daily lives. These changes for some people can be so profound it can lead them to question their identity, wondering if when so many things have changed, they are still the same person.
Where does the ‘not OK’ come from?
The changes, unexpectedly forced on us by circumstance such as accidents and illness, can leave us feeling ambushed, trapped and bewildered, unable to understand the how and why of what we’re dealing with. It’s particularly difficult when the forced changes (such as those caused by pituitary conditions) take us away from the person we want to be and the life we want to have.
It’s likely going to be hard as this may be your first experience of going through something like this and working out how you do this and/or deal with it is going to take time. There’s the strange new world of the pituitary to learn about – what it is, what it does, and how things have gone wrong in your case. There are a bewildering number of tests to have, and potentially a lot of treatments. However, you may have felt before you started getting symptoms (say, 10 out of 10 for health), with current treatments and hormone replacements you might only ever get back to feeling eight out of 10. Eventually, there will be a new normal, but it may take longer than expected to emerge. Over time, the shift from the black and white of health or illness will be replaced by the grayscale continuum of life with a long-term condition.
I think another problem arises in societies obsessed with productivity where it’s not OK just to exist – being economically productive is seen as the most important thing working-age adults can do. That can be a significant challenge for people with chronic health conditions. As a single example, fatigue is one of the most common problems that people with pituitary conditions talk about and it can force you to make difficult choices about how to spend what little energy you have.
Why it’s important to talk about it
‘It’s OK not to be OK’ is a phrase usually used in relation to mental health, but it could and probably should be used in respect of the physical aspects of living with chronic health conditions too. The stigma around mental health is reducing and people are being encouraged to talk more about how they’re feeling. What people need in response to that is true compassion, empathy and understanding, not empty words and certainly not pity. Being pitied means that others have judged us as being somehow less than them. Seeking, or having to seek, understanding or assistance from someone who is making it clear that they feel they are superior to you simply increases the feeling of not being OK, by adding shame and guilt to the mix.
A proper acknowledgement that something is stressful and difficult is important and valuable. If you’re the person experiencing the stress, being told that such stress is normal and that you’re handling it as well as anyone else helps to reduce the anxiety about it. That’s particularly true if that person has what’s called ‘social power’ like a doctor or a psychologist. As far as pituitary conditions go, if you’re finding it challenging, it’s important to know that you’re not the only person who is/has found it hard. For some people, it’s not just stressful, it’s traumatic. And an important part of the resolution of trauma is the recognition by others of what you have experienced.
Asking for help
With effects such as significant fatigue and cognitive difficulties, talking may not be enough. You may need to think about doing things differently, and that may require explaining to other people that you need some adjustments. People with long-term health conditions that impact on what they can do often feel very embarrassed asking for help and may find it easier if others offer assistance. Such offers of help can give us permission to own our difficulties and challenges in a supported way. Without them, it can feel like we’re being a wimpy nuisance by asking for help and support or, even worse, that we’re simply attention-seeking.
In lieu of the adjustments, it’s easy to say to yourself, ‘things would be better if I just tried harder’. Trying too hard can be a problem though, as it takes (and wastes) a lot of energy. It’s easy to be hard on ourselves because then we feel like we’re somehow showing other people that we’re not being lazy in the way we’re managing ourselves and our condition. The harder we are on ourselves, the more stressed, anxious and frustrated we’re likely to feel. Anxiety is a high-energy state which drains our personal batteries very quickly. The less energy we have, the harder it is to manage our health on top of all the other demands life makes of us.
Try asking yourself these questions…
To be good at the kind of self-management required by long-term health conditions means having a good understanding of what is it you’re dealing with. That means making to the time to be able to properly listen to yourself. I’m not talking about holding a pity party, or self-indulgent navel-gazing. To get your needs met, you must understand what they are and what might make things better. You need to be willing to listen to yourself and respect and repsond appropriately to what you discover.
Probably the most effective question to ask ourselves, one that really cuts to the heart of what we (or someone we care about) is feeling is: What troubles you the most about this situation? And because pituitary conditions affect so much about what it means to be human, it can be useful to drill down into the answer about what’s troubling you using the ‘Five whys’. Asking ‘Why am I feeling this way (about what’s troubling me)?’ five times, taking time to properly listen to ourselves as we answer each time. It can be surprising what sits at the bottom of a problem and where action really needs to be taken.
In contrast, ‘What’s wrong with you?’ often used as a key diagnostic question by doctors and by others in exasperation, is profoundly unhelpful. The question puts the person being queried at a disadvantage because it infers that they are somehow at fault. It’s a negative judgement that, when internalised, can lead to low self-esteem and negative self-talk. It can be more helpful and supportive to ask, ‘What’s happened to me?’ It’s a kinder way of understanding our personal history and a good starting point for helping us to feel more kindness and compassion to ourselves, both of which are much more useful for helping us to manage long-term health conditions than the stress induced mental nagging that most of us subject ourselves to.
The two types of questions outlined above are ones that you might use occasionally, but there are a couple that are worth asking every day several times a day: ‘How am I feeling?’ and ‘What do I need?’ Pacing ourselves throughout the day is important, particularly if we’re prone to fatigue, brain fog and feelings of stress and overwhelm. Checking in with ourselves on a regular basis means we’re more likely to keep on top of the simple basics of self-care, such as staying hydrated and monitoring our energy.
Final thoughts
Endocrine disorders are increasing, and there are increasing numbers of other people who have other chronic health conditions that change and limit what’s possible for them to do too. For societies to function, we need to support people to live with dignity. To be able to say when we’re not OK and we need help, and for that help to be there when we need it. We come into the world needing help and support and some of us will need help, care and support as young people and adults too. It shouldn’t be something to feel ashamed of and it shouldn’t be seen as a burden. Remember, The Pituitary Foundation has multiple resources intended to help you understand and manage your condition.
In need of more support?
You can speak to our helplines or explore our psychological support resources for more information and support.