Reducing the stress of a long-term condition How can we manage any stress or anxiety that we experience as a result of living with a long-term medical condition? Stress is how your body and mind reacts to new or difficult situations. It can affect you physically, emotionally and mentally. A manageable level of short-term stress can be beneficial; it can push us outside of our comfort zone (going to a party where you don’t know many people) or motivates us to perform at our best (a presentation you’re giving at work). However a chronic health condition can cause constant stress, becoming exhausting and overwhelming. We’re no longer at our best, and this in itself can take its toll on our health. 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, will need the support of others for the rest of our lives. We're also living with an 'invisible condition'. We may look fine, but our body and brain is handling more than those with working adrenals, so it needs extra support. Stress can also be caused by people, systems, or services that are not supportive in ways that could make a meaningful difference to you or the person you support. 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. How to reduce our levels of stress and anxiety? Coping with Psychological Stress - do I updose? Mental illness and Addison's and adrenal insufficiency Professional support Webinar: You & Your Emotional Wellbeing How can we reduce our levels of stress and anxiety? Being able to recognise and manage stress is important for you and those you care about. In Rareminds Wellbeing Hub, they list strategies that can help you cope with stressful feelings as they arise, and how to manage stress longer-term too. Not all the techniques might feel possible for you and your situation. However, even just trying out one or two approaches might help to make a difference. Rareminds Wellbeing Hub - Stress Everyone copes with stressful situations in different ways. We asked our members what they've found helpful in reducing stress and feelings of being overwhelmed. Looking after yourself and treating yourself kindly. We know this isn't easy with the demands of daily life, but it’s good to be aware of how easy it can be to give into the habit of letting Addison's and adrenal insufficiency self-care slip in times of stress. Learning to say ‘no’ or ‘not now’ - both to other people and ourselves. The 'Spoon Theory' (a metaphor for living with limited energy) can be a helpful way to explain the need to rest to others, whilst offering solidarity and understanding to yourself. Having a good cry or shout! Becoming an expert patient - knowledge is power and helps you control what you can. Talking to someone who ‘gets you’ - whether a friend or on an online forum. Getting enough sleep and incorporating exercise, rest, and relaxation into your routine. Two other main areas which came up in our members' responses were: shifting perspective (learning to see our Addison's or adrenal insufficiency differently) and developing strategies to calm the mind. Changing the way we see ourselves One ADSHG member shares how soon after their diagnosis they decided they didn't want Addison’s to define them. Yes they have the condition, but they are more than that - they remain, essentially, the same person. For their situation, they found that comforting, defining themselves as a person with Addison’s, rather than an Addisonian. We also asked the tricky question, "What if Addison’s could do some good in your life?" For some the answer to this is fundraising, raising awareness, starting a local social group or volunteering, to help others who have gone through what they are going through. Having the condition has given them a rare insight into a world where they now feel they could, and can, make a difference. We also asked: "If having Addison’s has given you something worthwhile, what would it be?" Giulia on our blog answered: "It’s made me understand my body and I trust my instincts a lot more because I knew something was wrong." So here are some questions for you today: How could you let yourself, or the person you support, know they are not defined by Addison’s or adrenal insufficiency? What does this free you to enjoy? What positive changes can you make in your life, that you associate with Addison’s or adrenal insufficiency? 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. Rareminds: Mindfulness, relaxation & coping strategies Coping with Psychological Stress - do I updose? Sometimes when coping with high emotional or psychological stress more hydrocortisone may be required. Clear guidelines exist on how to manage cortisol replacement in times of physical stress such as fever, infections, trauma, surgery, or severe pain. However, it is more difficult to define how emotional and psychological challenges affect the stress response, mostly because each challenge is unique and individuals may respond in different ways. Emotional stress has been reported as the triggering factor of acute adrenal insufficiency in up to 1 in 6 patients developing an adrenal crisis. This is recognised in the NICE Guidance: Adrenal insufficiency: identification and management. The psychological stress definition now includes examples such as bereavement, exams, and getting married or divorced, to help illustrate and provide real-life examples to improve understanding. Updosing for Psychological Stress 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. On our blog people from our community such as Vinoj, share their personal experiences and they manage their struggles. Visit our Blog 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 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, so you can get the support that is right for you. 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. If you are unsure, always speak with your healthcare team to refer you for professional emotional support. More places you can get support Wren Project A UK charity providing free 1-1 listening support for adults with an autoimmune disease diagnosis. Please note that Wren is therefore only able to support those with autoimmune Addison's disease (primary adrenal insufficiency). Rareminds Wellbeing Hub Resources for all aspects of living with a rare condition, with sections dedicated to diagnosis, uncertainty, change and loss, relationships, feelings, healthcare navigation and many other challenges. Online Forum Speak with others who just 'get it'! A welcoming space to share experiences, ask questions and discuss the practicalities of living with Addison's and adrenal insufficiency. Rareminds Wellbeing Hub & Podcast Rareminds have a brilliant podcast to support mental health and cover all aspects of living with a rare condition. You can read our interview with Kym, founder and CEO of Rareminds or click below to listen. Catch up on our online Wellbeing webinar, run in collaboration with Rareminds, recognising both the importance of emotional wellbeing and the unique challenges of living with a rare condition. Our aim was to share expert advice, remind you that you’re not alone, and offer practical strategies to help support your emotional wellbeing. Following the event, attendees let us know how they found the session, with many describing the session as “empowering” and “reassuring.” 94% of people felt less isolated and 83% felt more resilient, having attended, so although it is easy to feel that there isn’t enough time, or it can wait for another day, your emotional wellbeing is really worth putting first. Click the link below to watch back! Contact other national charities The charity 'Scope - Equality for Disabled People' offers a helpline if you would like to talk on the phone. Reach out to Mind and Rethink 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. Whether you're newly diagnosed or have lived with the condition for years - please join our community and support our cause! 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