Are You Ignoring Your Haemochromatosis?

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Haemochromatosis

Being diagnosed with any disease can be overwhelming, but ignoring it won’t make it go away and can even be life threatening.

Now, I was no poster child when it came to accepting my diagnosis of haemochromatosis.  In fact, it took me five or six years to take my diagnosis seriously. It was only when a complete stranger outwardly told me that this disease could one day prevent me from living the life I had created that I decided it was time to learn more about this ominous disorder called haemochromatosis and take responsibility for my health.  You can learn more about my diagnosis here.  I will be forever thankful to that stranger, as I now know that managing haemochromatosis is, relative to other conditions, incredibly easy, non intrusive and straightforward.

So why is it that some of us find it so difficult to accept that we have haemochromatosis and to take the necessary actions to address it?

Denial

Our mind is a wonderfully complex thing, and sometimes when we don’t like what’s happening or what we’ve been told, it can seek to protect us by blocking this stressful news – but only for a while.  In the right circumstances, denial is an important coping and defence mechanism, giving us time to come to grips with the anxiety of change, vulnerability, lack of control and shock of hearing you have a disease you will need to manage for the rest of your life. However denial also has a sinister dark side and can act as an unhelpful roadblock to the action we need to take to ensure we don’t jeopardise our health long term.

Whilst I didn’t outwardly deny having haemochromatosis and was quite happy to tell my family and close friends about this disease, for me denial came in the form of inaction and minimisation of the consequences. I told myself that I wasn’t like other people diagnosed with haemochromatosis because:

  • I was in my early 30s.
  • I was a healthy menstruating female who didn’t need to donate blood as often as older women who had been through menopause.
  • I didn’t have any outward signs, other than primarily feeling tired and having a little joint pain, which was just part of normal life, right?
  • I was just way too busy to let haemochromatosis into my life – I couldn’t possibly take time out of my busy day for GP visits, blood tests and trips to the blood bank.

Because of this unhelpful rationalisation, I ignored my GPs advice and didn’t adhere to the recommended venesection regime.  I know I’m not alone, which is why it’s so easy to share my story with you.

Accepting the long term nature of haemochromatosis is often difficult – and at times the treatment can temporarily leave us feeling just as bad as the symptoms – however it is such an important step. It is possible to lead a relatively normal life with haemochromatosis, so it’s important to control our disease, rather than let it control us – and this requires kicking denial to the kerb and embracing acceptance and responsibility.

Fear

Truth be told, I was also fearful of what my diagnosis could mean – the changes I might have to make, how it might impact what I loved to do and what the longer term prognosis looked like.  Fear can be such a powerfully debilitating emotion.

I’m so grateful that my eyes were finally opened, and I didn’t leave taking my disease seriously until I experienced outward complications. For a long time, fear controlled me and stopped me from living my best life with haemochromatosis. It has only been through acceptance and the practice of yoga and mindfulness that I’ve been able to recognise the fear inside me and start to face it.  This doesn’t mean I’m now jumping out of planes, swimming with sharks or eating chicken feet, but rather that I’ve learnt to observe my fear, stop the wild stories in my head, take back control, breath and ultimately let the negative thoughts go.

So, what can you do today to take responsibility for your health and wellbeing?

  • Educate yourself – be informed, ask questions, join a support group and seek professional help when you need it. The more you know about haemochromatosis, the more empowered you will be.  Thankfully a diagnosis of haemochromatosis is not life threatening if dealt with early and you can have a healthy and even more fulfilling life by taking care of yourself.
  • Talk to your GP – keep in touch with your GP through regular visits and take an active role in your treatment decisions (you can find suggested questions to ask your GP about your diagnosis here).
  • Be proactive – commit to your prescribed venesection regime and plan your weekly meals to ensure you follow the basic haemochromatosis diet (which you can read about here).
  • Fit in some “you” time – make time for some form of exercise each week (I’m a big fan of yoga for a whole body, low impact workout and stress reduction), ensure you get a good night’s sleep and practice mindfulness or meditation when possible.
  • Express your feelings – open up to friends and family about your feelings and invite them to your next GP visit or support group. This will keep both you and them from feeling isolated as you continue to learn about haemochromatosis together.
  • Maintain a positive outlook – do the best you can and give yourself a big pat on the back for focusing on the healthful behaviours you are adopting. Big changes start with small steps.
  • Step up – if you know someone living in denial about having haemochromatosis, help them out by letting them know you are open to talking about the subject, listen to their concerns, share your feelings and offer to visit a GP together.

Finding out you have a disease is a blow, but how you choose to deal with it can make a big difference to your long term health and wellbeing. By committing to the above you can ensure haemochromatosis is part of your life, but does not define it.

One response to “Are You Ignoring Your Haemochromatosis?”

  1. […] Cirrhosis of the liver is heightened in people with haemochromatosis due to the build up of iron in the liver.  For this reason, there is also a greater risk of liver cancer (hepatocellular carcinoma) for people with haemochromatosis.  Early diagnosis and removal of the malignant cells can increase the chances of recovery, which again reinforces the importance of not only early screening for inherited haemochromatosis but also taking ongoing responsibility for your disease (you can read more about this here). […]