Coping with a diagnosis of coeliac disease and the ongoing issues that come with
living with the condition can be tough.
But undoubtedly the person best placed
to help you on the journey is … you.
Alex Gazzola outlines some self-help
ideas, extracted from his book, Coeliac Disease: what you need to know.
When there is so much to take on board as a newly diagnosed coeliac – the complexities of food labelling, the new food and diet regime, the various physical implications, and so on – the psychological impact of your diagnosis may take a back seat. As so much of your time is occupied with the practicalities of your condition, it’s easy to neglect your emotional health. So what problems can manifest themselves – and how can you help yourself?
Coping with diagnosis
Some people welcome their diagnosis of coeliac disease (CD). Perhaps having suffered for years, with doctors unable to get to the root of the problem, it can be a relief to be told that it’s not all in your head, and that a gluten-free diet (GFD) should put you on the road to recovery.
But others don’t cope so well. ‘Why me?’ you may wonder. You may feel anger that your body has let you down, and that it shouldn’t be ‘failing’ you at a possibly young age. Perhaps you feel frustration at the prospect of social events where newly-banned foods such as pizzas, sandwiches and cakes are everywhere. You may be in denial, or feel self pity.
A brief period spent feeling sorry for yourself can do you good: if you’re overwhelmed with your diagnosis and its implications, having a short ‘shut down’ for a few days could be just what you need, and is perfectly normal. But if you suffer ongoing emotional difficulties, it is important to be aware of them – and to act.
This is a symptom of undiagnosed CD, but studies have found that diagnosed coeliacs on a GFD are more likely to be depressed. Older people, a group in which diagnosis rates are rising, may be particularly susceptible to the ‘coeliac blues’. You may be feeling doubly fragile at a time when your body might already be showing other signs of ‘wear and tear’. Symptoms may include disinterest in even pleasurable activities, lack of appetite, lethargy and poor sleep patterns.
This may be a sign of denial. Are you beginning to take risks with food labels or ‘may contain’ warnings? Have you given in to temptation without checking ingredients? Have you skipped any regular coeliac-related healthcare appointments?
Sadly, many coeliacs feel ashamed of their condition, and embarrassed at feeling as if they’re ‘making a fuss’ at social events. People are not always understanding or sympathetic: because the GFD is undertaken by some people as a means through which to lose weight or ‘detox’, you may be treated sceptically as a faddy eater. Coeliacs can react to this in one of two ways: either they avoid social situations and isolate themselves, or they expose themselves to risks by not speaking up.
Anxiety and stress
Even if you were relieved at your diagnosis, that relief may be short-lived: the stress of not knowing what was wrong and perhaps trying to convince your doctor that something was amiss may have been lifted, but now it has been replaced with the anxiety of an uncertain future. Can you cope?
Some underlying anxiety is okay: you need to be alert to possible danger and ready to respond. But chronic stress can be debilitating: it is often felt in the gut – the last place you want disturbance as a coeliac – and is a sign of a problem which needs to be addressed.
So what can you do? Although there are plenty of individuals, specialists and groups who can help, there’s one person who is undoubtedly the most important in your own emotional. You.
Learn everything you can about CD, and approach your fact-finding mission positively; your aim is to eliminate the anxiety which ignorance breeds. If there is something you do not understand, then resolve to find the answer. Getting on top of issues about which you’re unsure is empowering. Call Coeliac UK, speak to your dietitian, or find the answer in a good reference book or trusted online resource.
Remind yourself that your condition, despite being serious, is manageable and that nobody is to blame for it: you were merely unlucky genetically. Focus on the positives: think of the food you can eat (there are hundreds) not those you can’t; think of how your health will improve on a GFD. Positive thinking also helps your self-esteem and self-confidence, vital when facing the world as a coeliac.
Exercise and activity
Good for you physically, but super on a mental level too. You don’t have to join a gym. Don’t run if you hate running. Merely resolving to take more walks is effective. Instead of focusing on the ‘exercise’ aspect, do something you love which involves activity and energy – such as amateur dramatics or DIY. Your body was designed to be active through living.
Smiling, Laughing …
Take part in fun activities, watch your favourite comedy shows, and share a joke with fellow coeliacs – whether it’s over a dodgy coeliac tummy or the silly things which ‘wheaties’ (non-coeliacs) say. Laughter is not the best medicine – nutritious GF food is – but it’s still a very good one… See Michelle’s Blog on the benefits of smiling – or try ‘Howard the Celeriac’ for some cartoon-based fun.
Most people avoid certain foods. This can be for any number of reasons – ethical beliefs, religious beliefs, cultural beliefs, food allergies, food intolerances, unpalatability, health concerns. You don’t eat gluten for a very good reason – and it’s as valid a reason as others’ not eating of peanuts, dairy or pork, for example. Have the same pride and confidence in your restriction as anyone else.
Many people say they’re unable to relax, but there is more to unwinding than just willing yourself to do so. Pampering – a hot bath, aromatherapy oils – can help, as can a massage from a willing partner. Meditation, prayer and chanting are deeply relaxing if they are right for you personally; as are forms of yoga and healing martial arts such as t’ai chi. Find what works for you, and remember that relaxation takes practice.
Learning to breathe correctly is of enormous value to stress relief: inhale deeply and slowly into the belly to the count of three, exhale evenly to the count of three, then pause for one – and repeat. Yogic breathing while seated and focussing on a lit candle is soothing.
Helping yourself by helping others can work wonders. Volunteering gives something back to the coeliac community, and will also strengthen your character and prove fulfilling. Coeliac UK is always looking for volunteers to help with campaigning, research or to boost local support group membership and activities.
Another option might be to volunteer to be a media ‘case study’: sharing your story with the wider reading public can be therapeutic.
Putting your experiences on paper is an excellent way of clearing your head, unburdening yourself, understanding your problems and charting your emotional progress.
An alternative to keeping a private diary is keeping a public one – or a ‘blog’, which can be an online web diary of your experiences with CD and, well, anything you like. Coeliac blogs are popular, and many coeliacs share their tips, recipes and thoughts online, and invite you to add comments.
Others who can help
* Friends and family: for practical and emotional support.
* health / support charities or groups: such as Coeliac UK, the Samaritans, The Depression Alliance …
* Online support or chat groups: such as the Coeliac, DH and Gluten Free Forum
* Health care professionals: your GP, your dietitian, your gastroenterologist.
The road to acceptance ... and beyond
* Resolve to take positive action – learn to scrutinise labels, ask questions, learn everything you can about CD…
* Focus on everything positive – there are lots of new foods to enjoy, remember how much healthier you feel on the GFD, remind yourself you are on the road to recovery…
* Forgive yourself – if you make mistakes, if you feel grumpy, if you need some time to yourself…
* You are never alone – spend fun time with loved ones, talk to fellow coeliacs, call a support charity if you need one.
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