Failing, succeeding, pausing, deciding, thriving. A Chronic Voice Linkup

Feeling Like A Failure Was One of My Failings

If someone is well off, has a fancy car and a five bedroomed house in a nice area, they're considered successful. If they have fulfilled their hopes and dreams, they're considered successful. Qualifications, careers, acquired wealth, sporting victories and acting awards can all measure a person's success. But when people live with chronic pain or …

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Supporting People on Rare Disease Day

It can take a lot of courage to discuss health issues with friends and family, but sometimes people put their own health in the public spotlight to help others. Sharing Matters When someone has a rare disease, there is often very little information and support, therefore, what these people do really matters so much to …

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Why We Need to Support Rare Disease Day

Rare Disease Day (28th of February) was first set up in 2008, with awareness events taking place in just eighteen countries. Last year, 90 countries took part.There are well over 6000 rare diseases in existence. Some are difficult to diagnose and most are difficult to treat or, in some cases, untreatable. Without awareness, there is …

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How to support someone who has an invisible illness

Some illnesses are obvious to the naked eye. If someone is hobbling around with a plaster cast on their leg, we can tell they have a broken leg. If they have misshapen fingers, we can normally presume that they have painful arthritis.But so many people have health conditions which can’t be seen. Those conditions are …

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How to help doctors treat patients better

How to help doctors listen and understand better

When we live with chronic illness, the relationship we have with our primary care doctor is one of the most important relationships in our lives. We rely on them to help us. But what happens if we feel the doctor is not listening to us or understanding our problems?That leaves us feeling as though we're …

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Learn about coeliac disease

What is Life Like With Coeliac Disease?

In December 2017, I was diagnosed with Coeliac Disease, which meant cutting out all gluten from my diet. It came as quite a shock at the time as I didn't have the typical stomach problems (often diarrhoea, nausea and bloating) which tend to come with coeliac disease.While doing blood tests to try to get to …

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