Living with a chronic illness or autoimmune condition is tough.
Do you:
- Resent or feel betrayed by your body?
- Feel disappointed every time you have a bad day of pain, fatigue, or brain fog?
- Hate having to cancel plans?
- Feel like life is passing you by?
- Hate feeling like ‘a sick person’ or that other people might see you this way.
While a diagnosis may feel like the final piece in the puzzle, sometimes it’s just a corner piece to a new puzzle – where you have to figure out your feelings and plan of action to deal with your health in the long-term. Maybe you’ve known what’s “wrong” for a long time, but are finally at a point where you feel you can do something about your situation.
Some people naturally and automatically throw themselves into managing their condition with lifestyle changes, diet and supplementation (and medicine) and don’t consider taking time to think about their relationship to their body or their relationship to their illness or diagnosis. Of course this doesn’t need to be done immediately, or as part of first line intervention, but at some point it’s likely to come up!
Mindset work is crucial for all the patients I help, because all change, positivity, and resilience comes from within – and it can be difficult to take sustainable action when you’re feeling scared, cynical, angry, or alone.
In quite a large percentage of my patients, there is also some kind of historical stress or childhood trauma, and an observation of mine is that many people who have experienced this have distanced themselves from their body as a coping mechanism and feel very detached from their physical bodies.
It can be really difficult to heal, if you haven’t addressed what being sick is to you, or what your relationship with your body is.
The Impact of Chronic Illness on Quality of Life
Your quality of life can be really affected when you have a long-term chronic illness – understandable when you consider many symptoms such as increased fatigue and pain, brain fog, and digestive issues. Not to mention the difference in symptoms day-to-day – one morning you may be fine to go buy groceries, but the next you may be bed-ridden. I know how frustrating that can be.
You may feel as though you live to attend doctor’s appointments, take medications, and try to stay on top of your prescription refills and a multitude of supplements. The change in your life can also affect your closest relationships – you can no longer make lunch with the girls, or that BBQ at the weekend. Your partner may have had to step into more of a caregiver role, and you miss the way things used to be. Maybe you had to reduce your hours at work – or quit completely because of the toll on your health.
You’re not alone.
- Patients with multiple sclerosis have a higher risk of developing a form of depression than healthy patients.
- Up to 50% of patients with autoimmune disease show depressive symptoms and a reduced quality of life.
- Patients with rheumatoid autoimmune diseases, such as rheumatoid arthritis and lupus experience reduced quality of life.
- Studies show there may be a bi-directional relationship between depression and autoimmune disease.
If you’re struggling with the impact of the change autoimmunity or complex, chronic illness has brought to the quality of life, the good news is that there are techniques you can use for dealing with this.
If you’re having low thoughts, or are struggling with depression, please get in touch with your doctor as soon as possible, or call Samaritans if you fear for your safety.
7 Mindset Techniques for Dealing with Illness
Mindset is one of those words that’s thrown around a lot, and it’s defined as “the established set of attitudes held by someone.” Mindset is powerful stuff – an established attitude can affect your next hour, day, or year, because it permeates everything – from your morning routine to your relationships with others – and how you feel about yourself.
Here’s a list of techniques and thought-processes to help improve your mindset around your autoimmune disease. When tackling any of these techniques, do remember you don’t have to be perfect, and you’re going to have days when meditation feels impossible, or you can’t shake your bad mood remember you’re not perfect – and life would be boring if it went right every day! But these coping mechanisms, used regularly, can help improve mood and your perception of your quality of life.
- Give yourself time to grieve the change in your life
You might think that mindset work is about staying positive above all else, but that’s not practical. You have valid feelings about becoming sick, and squashing them down isn’t going to help in the long run. So allow yourself to feel your feelings – however sad or frustrated you get. Sometimes you may need to mourn something concrete – such as not being able to attend a friend’s destination wedding. Or you may need time to process a change in your condition. Allow yourself the time to process these feelings – but schedule a simple activity for afterwards, so you’re not dwelling on these feelings all day.
- Accept that knowing your “why” may not matter
As I’ve explained before, autoimmune disease has many triggers including genetics, previous infection, leaky gut, and stress. But knowing your trigger – that is, if you even have one – makes no difference to the here and now, when you need to take steps to manage your condition – and your expectations of yourself.
- Forgive your body. And LOVE your body!
Bodies are not perfect. If you didn’t have an autoimmune disease, you might well be dealing with another condition. Your body is not the enemy – in fact, it’s wonderful. Autoimmune disease (and most chronic illness) is your body doing what it is designed to do, protecting you from a stressor in the environment. It’s just that things are not really going to plan for a variety of reasons, and you have an illness as a result. Forgiving yourself and your body for what might feel like a betrayal and focusing on loving your body for all the hard work it is doing can be quite transformational – and remember to focus on all the things you can still do.
- Ask “Am I looking after myself?”
Though it may seem like an obvious thing to query, if you’re dealing with a long-term autoimmune disease, and you’re carrying around feelings of resentment and low-self esteem, you may have let certain things slide. Try to make sure you’re nourishing yourself in the correct way – drinking enough water, eating the right things, doing your morning stretches, getting enough sleep – and learn to recognise when you’re not. The act of checking in with yourself is not to beat yourself up, but to remember to nourish yourself.
- Select small, realistic goals
Before you got sick, you may have had big life goals – or were used to ticking off several to-do items before breakfast. But your life has not ended. Equally, your old goals may not be as realistic as they were when you were in better health – you may need to adjust accordingly. So training for an ultramarathon may become training for a sponsored walk, and applying for a new job may turn into applying for a volunteer position – the important thing is that you break down these goals into smaller, more manageable chunks.
- Focus on things that bring you joy, and make you feel like YOU
I highly recommend scheduling something into every day, simply because it brings you joy and helps you stay in touch with who YOU are. Which might be related to who you were before you got sick, or might be a new you because you have moved forward and outgrown the old you. Grow a plant from a seed, paint a picture, plan a veggie garden, start writing a book or a blog. Whatever it is that makes you feel like you and is just for pleasure. I think it’s very important to have specific things that you do that are outside of the focus of your illness/health as well as it’s very easy for this to become an all-consuming focus.
- Meditate
Meditation is the simplest way to achieve mindfulness – and we’ve been doing it for millennia! Regular meditation can improve quality of life for multiple sclerosis patients and can reduce symptoms of chronic pain.
- Journal your feelings and perform gratitude
Alongside meditation, journaling and performing gratitude are crucial for maintaining a healthy mindset. Journaling allows you to let out all your negative feelings onto the page – you can use words or pictures to express yourself, just get it out. Keeping a gratitude journal is simple – just list the three things you’re thankful for in the moment. You might be thankful for the cup of herbal tea waiting on your desk, the joke you heard last night, or that patch of sunlight in your garden – write it down and appreciate the moment.
Using these tools can improve your mindset, and give you an important bedrock to improve your relationship with your illness.
2 Important Steps to Improve Your Relationship with Your Body and Your Illness
Once you’re able to recognise and work through your feelings around your illness, you can work on improving your relationship with your illness in the following ways:
- Recognise when you have to say no
Although you don’t want to be seen as the sick friend, try to be aware of your limitations and say no to events when your body can’t handle it. Being aware of your limitations is an exercise in self-love and self-preservation – you don’t want to surrender the rest of the week to pain and fatigue because you spent a few hours helping move boxes or at the pub. This skill is actually important for EVERYBODY! But especially if you have a chronic illness.
- Reduce your stress where you can
Stress can have a huge impact on autoimmune disease flare-ups. Reducing your stress may involve a mixture of mindfulness techniques and organisational techniques. Remember to ask for help where possible to ease the stress.
Sign up to my signature course: Foundations of Health to gain the knowledge you need to start reclaiming your health.
I provide a supportive and empowering course that helps you improve your health from the foundations up, focusing on not just your diet, but the health of your gut, removing toxins from your lifestyle, improving your sleep, reducing stress, and focusing on self-care. The course is made up of private consultations and classes that you can attend from the comfort of your own home. Sick of being sick, and feel like you’ve tried all the medications and therapies? Now it’s time to take your health into your own hands.
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Robyn Puglia
Robyn is a Clinical Nutritionist with a specialised interest in the Functional Medicine approach to health. Robyn is very involved with the field of Coeliac Disease, Gluten-Reactive Disorders and Autoimmune Disease. Her passion for the healing power of food, has led her to work with complex cases, involving multiple diagnoses, and chronic health issues such as ME, auto-immune diseases and fibromyalgia. She also has a passion for working with the growing tide of chronic, lifestyle mediated illness; diabetes, cardiovascular disease and obesity, and runs a lifestyle intervention clinic for these issues. Robyn works with patients to nutritionally support their bodies, so that they can heal. She has successfully helped many people around the world improve their health and increase their quality of life. Robyn sees clients in London, Tokyo and New York, and has a virtual practice that allows her to work with people all over the world.
