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The invisible nature of chronic illness

When you and your haematologist look at your blood test results, it's often clear that everything's not quite right. But other people in your life may not see or understand these changes. Myeloproliferative disorders are very 'loud' at the cellular level - where something is happening in your body - but when you communicate with other people in social situations, these disorders but they can seem relatively 'silent' or invisible to others. Onlookers are not always sympathetic, and this can be distressing for someone with an MPD.  It's not surprising that patients feel upset when family and friends, work colleagues and employers all seem to question the legitimacy of the illness. A young man with a myeloproliferative disorder who found it very hard to cope exemplifies this distress:

"Everyone keeps telling me that I look fine. When I tell them I am not fine they are not interested.  This makes me upset and fed up. What's the point in trying to explain anything?"

 

In some patients, feelings like these can cause social withdrawal and increased depression; these feelings are compounded by the side effects of medication.

It can be distressing to find that others are not sympathetic. Just knowing that others might have trouble understanding and accepting your MPD can sometimes help. By taking a bit of distance from the situation and reflecting, you can develop ways to communicate your needs effectively.

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