How can we manage any stress or anxiety that we experience as a result of living with a long-term medical condition?

A certain amount of stress is helpful in our lives – it’s what lifts us from pleasant torpor to perform at our best. But constant stress produces so much adrenaline in the body that we can’t think straight, become exhausted and then can’t sleep for thoughts swirling around our heads. We’re no longer at our best, and this in itself can take its toll on our health.

A major part of the stress which affects those who have Addison’s and adrenal insufficiency – and their loved ones – is often a sense of feeling out of control. We have had the shock of finding out that we ourselves, or someone we care about, will be dependent on daily medication and – when unwell – on the support of others, for the rest of our lives. We can feel helpless and powerless and the mind goes into overdrive about the implications of this.

In this article we look at how you can reduce this stress and resources to help you when you need more support for your mental health and the importance of speaking out knowing you are not alone.

So, how to reduce our levels of stress and anxiety?

That is the key question behind this series of columns. A brief answer might be, through a two-fold approach of changing our perception and developing techniques to calm the mind – as best we can.

And we can learn from the inspiration of those who faced even more daunting challenges. Victor E. Frankl was a survivor of the apparently total helplessness of Auschwitz concentration camp. He wrote: “Everything can be taken from a man but one thing: the last of the human freedoms – to choose one’s attitude in any given set of circumstances, to choose one’s own way.”

Changing the way we see ourselves 

How might this help? For example, in my own case, soon after my diagnosis I decided that I would not let Addison’s define me. I have the condition, but I’m so much more than that. I remain, essentially, the same person. I found that comforting. I am a person with Addison’s, rather than an Addisonian.

Then I asked myself a strange question: What if Addison’s could do some good in my life? I pledged to make two potentially life-enhancing (or life-saving) changes that I now link in my head with Addison’s: to eat healthily and to drive at a maximum of 65mph. Both make sense in the context of a medical condition, but also bring me many other benefits. (Anyone want the stress of driving at 80mph in the fast lane?) Thank you, Addison’s!

So here are some questions for you today:

  1. How could you let yourself know that you/your child/your partner is not defined by Addison’s?
  2. What does this free you to enjoy?
  3. What positive changes can you make in your life, that you associate with Addison’s?

Locating your own trigger for calm

We have more power to change our inner state than we might believe. How we feel and what we’re thinking, is often a result of where we’re placing our attention. The memories we refer to play a big part in this, as they trigger accompanying emotions in us.

So how about using positive memories to help us experience helpful feelings? That is what this technique does. Here’s how:

First, review in your mind some memories of times when you’ve been calm, or felt safe and relaxed, in the way you’d like to feel more often now. Choose one (or more) that’s vivid.

Close your eyes, let your body relax and breathe deeply in and out. Enjoy re-living this memory for a while, seeing it through your own eyes, hearing the sounds of it, re-experiencing the sensations of it. Some people find they can more easily do the seeing or the hearing or the feeling, and that’s fine.

Then, you can store up one or more significant aspects of this in your mind – an image, a sound, a sensation – in whatever way would mean that when you want to feel calmer, you can trigger yourself back into that state by letting those aspects of the memory come into your mind.

Coping with Psychological Stress - Do I updose?

Sometimes when coping with high emotional or psychological stress more hydrocortisone may be required. If you're looking for more information and guidance on this, you can read our article here.

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

Coping with mental illness and Addison's and adrenal insufficiency

A chronic health condition can be exhausting and overwhelming. This can cause long periods of feeling low. However it is important to ask for help for when feeling low changes to anxiety, depression and feelings of hopelessness.

Many tell us they have struggled with their psychological wellbeing since being diagnosed. We know Addison's and adrenal insufficiency and mental illness, such as depression and anxiety, can be really difficult. So we want you to know you are not alone and that there is lots of information to help you cope during this time.

Mental illness such as depression can share some symptoms with Addison's and adrenal insufficiency. Being tired and sleeping a lot, and having difficulty concentrating can happen when you have either condition. This can make it difficult to know whether your symptoms are being caused by depression or your Addison's and adrenal insufficiency, or both.

Be kind to yourself

Each person’s experience of Addison’s and adrenal insufficiency is different, depending on many factors including other health conditions you may have. It’s a tough condition to deal with as it’s always present, and that can be exhausting. Try to look after yourself and give yourself time to digest information about the condition.

So take each day as it comes, find the best balance of daily medication for your body and know our charity and the rare diseases community as a whole, are here for you.

Professional support

Anxiety and depression are serious mental health conditions, which can affect anyone, regardless of culture, background and family history. So if you experience symptoms for two weeks or more, you should talk to your GP or another healthcare professional. They will be able to do an assessment with you, and recommend what to do next. It’s always going to be a hard thing to do, but asking for help and talking about your problems with someone can be really helpful.

More places you can get support

Your healthcare team can refer you to lots of places so that you can get the right support for you.

  • Ask your healthcare team to be referred for professional emotional support

  • Contact the Wren Project, a registered UK charity providing free, 1-1, listening support for adults diagnosed with autoimmune disease.
  • Rare Minds offers private therapy - allowing you to speak with someone who understands the impact of rare conditions emotionally, practically and physically.
  • Visit our online forum. Here you can speak with others who understand Addison’s and adrenal insufficiency specifially. This is a welcoming place for everyone affected by Addison’s and adrenal insufficiency to ask questions, read about people’s experiences and support each other.
  • Contact other national charities such as Mind and Rethink
  • The charity 'Scope - Equality for Disabled People' offers a helpline if you would like to talk on the phone.
  • Contact a charity for families of disabled children offers a 'listening ear' service.
  • Connect with the rare diseases community. Check out Rare Disease UK, Rare Revolution and Cambridge Rare Disease Network.
  • Read our blog where others share their personal experiences and they manage their struggles.
For people unsure how to approach discussions with a loved about their Addison's and adrenal insufficiency, this article is useful to help start conversations: ‘Silence can be incredibly hurtful’: How to talk to someone about their chronic illness

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