We explore how the words and phrases we use influence our mood and outlook, and how to explore ways of reshaping the descriptions you give to your medical condition/s and your identity.

The words and phrases we use influence our mood and outlook and it’s possible that the expressions you’re using about your life with Addison’s are contributing to negative beliefs that build up feelings of depression, worry, anxiety or demotivation. So it could be worth doing a check of your own thoughts and words as well as the expressions that others (family, friends, medics) might use. Then you can challenge and change any wording that tends to bring you down and instead find phrases that give you hope and a well-deserved sense of pride and positivity.

When you were diagnosed, what changed?
You are still you. To think of yourself as “an Addisonian” implies that Addison’s colours the whole of who you are – that it has changed YOU; whereas instead, the words “I have Addison’s” greatly reduce the implications. You happen to have this condition, and you are still all the other things you already were, such as tall or small, brown or blue-eyed, reserved or outgoing, a friend, colleague etc. Addison’s is just something you have or are living with, certainly not something you are. 

Comparing with others
It’s very easy to fall into the trap of differentiating oneself from those who don’t have adrenal insufficiency by saying something like “Well, in normal people the adrenals…. Whereas my adrenals…” You’ve just called yourself abnormal! Please think of yourself as absolutely normal, you just happen to have a body part that doesn’t produce hormones. You can give a matter-of-fact physiological description of what’s going on, just as someone who has a dodgy knee or high blood pressure might do. 

Empowering yourself
This then leads on to a very key and crucial point: you are managing this condition, you have developed expertise in your own responses and have gathered knowledge, experience and information – or if you haven’t yet, you soon will. These are all things to be proud of. How different would it be if you were saying things like “They’ve put me on x and y medications” or “I’ve got to do x and y” or “They tell me this or that”? That would put you in a passive, out-of-control position. Instead you’re playing an active role, an equal in the look-after-you team because nobody else knows how you feel moment-to-moment. So instead you can say “I take x and y and I’m lucky because they make me feel good.” 

If Addison’s Disease only contained one gift for us, it would be that we learn to tune into how we feel. Our endocrinologist has prescribed medication levels after carrying out tests, but ultimately, we self-medicate, adjusting exactly when we take our doses and whether to add some extra based on whether we’re feeling stressed, or are ill or injured. 

We are our own experts and my 95-year-old father, a retired GP who trained after the war remembers: “When I was a student at the Middlesex Hospital there was a marvellous, tiny, old-fashioned physician. He wore a wing collar and tail coat, could only just see over the lectern and his lectures were always packed solid. I remember him saying ‘Listen to the patient. He or she is telling you the diagnosis’.” 

Your team
Once you’re clear that you are the expert on you, it can be good to think of the medics you consult as being in your team, on your side. They have extensive knowledge and experience and thinking of them as partners in your care can facilitate good communication with them and enable you to let them know your needs, wishes and experiences. 

Self-injecting
The language we use around our crisis-avoiding injections will affect our physical experience. Pain neuroscientists know that fear and anxiety increase the level of pain we feel by sensitising the neurological pathways in our spinal cord. So you can make injecting more comfortable for yourself by changing your beliefs. Let yourself know that an injection is pure benefit to you, a good thing to be welcomed. It has nothing to do with jabbing or stabbing. Instead, you can think of it as ‘gliding in easily and comfortably’ (which is my experience). You could feel gratitude in advance for its wondrous effects and the difference it makes to you. After all we are lucky – less than a hundred years ago we wouldn’t have had this miracle so easily available. 

This article was contributed by an Addison's Disease Self-Help Group member with primary Addison's Disease.