When you have a condition like XLH it can be easy to focus on your body. But your feelings and how you're coping emotionally are every bit as important.
Heart and mind
When you have a condition like XLH it can be easy to focus on what your body is doing, and to overlook what’s going on with your feelings – your heart and mind; the other less visible bits that make up you. But your feelings, and how you are coping emotionally, are every bit as important as how well your body is doing. You're a whole package, after all, not just sore legs and some other bits that hurt too.
It’s crucial that you look after your emotional wellbeing, in the same way you look after your body, because this will help you cope with the highs and lows of life. The key is to develop a strong emotional resilience so that you can live an awesome life, whatever crops up along the way. This includes any challenges that your XLH, or the XLH of someone close to you, might bring.
Doing that might seem easier said than done, but there is help available. It’s understandable if you may have frustrations, fears and stresses about XLH, but rest assured that you can learn ways to protect and nurture your emotional wellbeing, and to really live well.
Most of all, remember that you are not alone. If you're feeling wobbly right now, the chances are that someone else with XLH has been there too, and felt how you are feeling. If you're feeling great, these tips can help you stay that way!
So, here are eight ways that you can start looking after your emotional wellbeing today. And, if you're a parent feeling worried about your child with XLH you may also want to visit our Support For Parents page.
Share how you feel
Talk to a close friend or relative – this isn't always easy to do and you don't have to bare your soul, but it’s amazing how much better you will feel for sharing your thoughts.
If your XLH is hereditary, then family members will know something of what you're going through. However, everyone’s experience of XLH is different, so they may not entirely understand your feelings.
As one patient says, “It’s good to have someone you can relate to. I can tell my cousin or my mum, it’s a good thing to have someone who knows what you mean.” But she admits that it’s hard to hear sometimes, “It’s sad to see my younger cousins suffering.”
The other great source of support is from others within the wider XLH community. “The opportunity to connect in person is the most valuable aspect of XLH. Meeting others with XLH is a life-changing event.”
Jess Leigh is a counsellor with Kernel Counselling, in Brighton, England. She specialises in counselling for chronic conditions. She says professional help can be very useful, as it can often be difficult to lean heavily on someone close. “For some people, cognitive behavioural therapy can be quite effective, to learn to interrupt negative thought processes,” she says.
Learn to accept your condition
As Jess says, “The absolute key to feeling as good as you can with an condition that isn't going to go away is to accept it, and that is one of the hardest things to do. It’s almost like stages of grief. You have to accept the loss of where you thought you might be, or what you might be.”
But, it doesn’t have to all feel hopeless; you can still chase hopes and dreams, just perhaps different hopes and dreams that take you in other exciting and optimistic directions.
Because XLH is a hereditary condition, many of you will have been living with it your whole life, and will have made life choices with your XLH in mind. But it’s also very common to feel as though your XLH has gone away when you grow up and finish any childhood treatment, only to feel all sorts of difficult emotions when new symptoms appear and old ones resurface in adulthood. At this point, although you may have come to terms with having XLH early in life, the re-emergence of symptoms may come as a shock, and you may find that you need another period of adjustment.
“You may not be able to change the fact of your condition but you can work on the way you respond to it,” says Jess. “Acceptance is key. It’s better to work with the condition rather than resist it.”
Learn to love your body
Body confidence is an issue for many people whether they have XLH or not.
When you feel that your body is letting you down in some way, it can make it even harder to love.
Feelings like 'I can’t trust my own body any more' are common
Some people with XLH feel they need to hide their bodies away. For example one person with XLH said, “I used to try to hide myself under long flowing skirts.”
Just remember – many people have something they hate about their body. Find something you love, too. Find a fashion style that suits you, and make it your own.
Learn to accept and appreciate the good things about your body. Talk to your medical professionals about activities you could do to get you back in touch with your body in a positive way – such as yoga. If you are in a relationship, be open and honest with your partner about your body – if you accept it and learn to love and embrace it, they will too (though they do already, right).
It is also possible to find new avenues to explore. Your body’s abilities are not just about how fast you can run – people with XLH often find new creativity, leaning towards hobbies such as arts, crafts, and music. Our bodies are amazing, with so many abilities, skills and talents – find yours!
As a parent writes to their child with XLH, “You have never let XLH slow you down, and I pray that you never do as an adult. As you age, you will find that your joints may age a bit faster than your friends. Don't let this discourage you. Always be positive and live a very healthy life.”
Find your voice
Becoming a strong advocate for yourself medically can give you more confidence so you feel you have more control over your treatment and your own body.
Many people with XLH experience huge frustration in childhood and adolescence due to others’ lack of understanding of their condition.
“It’s better as an adult because you're able to speak up more and express yourself,” says one person.
As an adult, you can seize control. You are an expert on your own condition. Your opinion matters and is of value, so write it down, find your voice and feel confident to share your thoughts. Jess says, “You can challenge and question things. The person with the condition is their own expert. You are the only person who experiences it the way that you do.”
Surround yourself with people who make you feel good
It is, generally, a really excellent idea to spend time with people who make you feel good, and avoid people who make you feel bad. This isn't always as easy as it sounds – but it’s sound advice nonetheless and something we all need reminding of from time to time.
Jess says, “It’s important to build relationships that are really helpful and supportive – a lot of people will try to give advice that isn't always helpful. Sometimes it's most helpful when people simply acknowledge your condition, witness it, support you, and say 'I know it’s very difficult, what can I do to help?'"
It’s particularly important to seek out positive relationships and friendships if you've been bullied as a child or teenager, as some people with XLH experience. One patient with XLH admits, “It used to stop me from socialising, knocked my confidence.”
Even the most well-meaning of people can say the most unbelievably stupid things… 'I thought only pirates got rickets'… 'Maybe you should drink more milk'… 'Aren’t you better yet?'… but if you have a core group of friends or family who understand your condition and don’t need to ask daft questions all the time, it becomes easier to brush off these comments.
As one person with XLH says, “I’ve tried to have a really normal life, and I have because my family treats me normal, and my friends treat me just the same.”
Set achievable goals
If your goal is to get out of bed that day, then celebrate your achievement! If it’s to go for a walk, celebrate that too. If it’s to stay in bed all day so you have the energy to go to a friend’s party, just roll with it.
It’s important to learn how to assess your level of pain and fatigue on a particular day, and be realistic about what you can achieve.
One XLH patient says, “I take each day as it comes. If it’s a good day, I put my all into it. If it’s a day I can’t get out of bed, then it’s a day I don’t get out of bed.”
Jess agrees, “If you're having a bad day, just accept that, and the next day will probably be better. It’s not fixed, it will fluctuate, it won't always feel as bad.”
Focus on the here and now
Mindfulness is a great buzz word right now – but what does it actually mean? Well, the Mental Health Foundation describes it as 'a mind-body approach, it can increase our ability to manage difficult situations and make wise choices.'
Sounds awesome, right? It’s not just a buzzword either – many schools are adopting it with young children to give them a strong emotional foundation. If you want to find out more about mindfulness, there is a ton of information on the internet, including here: http://bemindful.co.uk and here: https://www.skillsyouneed.com/ps/stress-tips.html.
Meditation can be used as a mindfulness exercise, along with breathing, and yoga. As the Mental Health Foundation states, 'Mindfulness meditation has been shown to affect how the brain works and even its structure.' Combine that with regular exercise, and you’ve got the recipe for a healthy, happy lifestyle.
If you're really suffering – take action
There’s no shame in asking for help. A 2014 study by the World Health Organization indicated that 27% of the adult population in the European Union had experienced at least one mental health issue in the past year, and globally one in four will suffer with a mental health issue during their lifetime. So if you are really struggling with low feelings or anxiety, you’re definitely not alone!
Here, a patient with XLH describes how pain drove her to the edge, “Your bones ache all the time. You can’t sleep from pain. You can’t concentrate at work from pain. You’re going a week between showers...You don’t want to hang out with your few friends because it’s too hard to move and you’re just too tired. You’re showing signs of real depression…”
If you’re feeling really terrible, seek help fast – you can feel better and you deserve to feel better. Check out the support services below.
Here at XLH Link we appreciate that there is so much more to you than your diagnosis, so finally we’ll leave you with this thought from Jess, “It is going to take time. It won’t always be as bad. Some days, you’ll feel good. There will be more possibilities than you realize.”
Mental Health Europe
SOS Amitie is a French service which provides a helpline and online service for anyone going through a difficult time
Telefonseelsorge is a German counseling service
Telefono Amico is the Italian version of The Samaritans
Telefono de la Esperanza is the Spanish mental health hotline: 902 500 002