Looking well but feeling awful

Invisible/“Silent” diseases It can be very distressing for people diagnosed with a myeloproliferative neoplasm (MPN) to find that others are not sympathetic. 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.

MPNs are very “loud” at the cellular level.  It’s clear when you see your blood test results that something is happening in your body but when you communicate with other people in social situations, these disorders can seem relatively “silent” and invisible to others.

Misunderstanding

Onlookers are not always sympathetic, and this can be distressing for someone with an MPN. 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 an MPN 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?”

What you may be feeling

Feelings like these can sometimes cause social withdrawal and increased depression.  These feelings can be compounded if you feel unwell or fatigued because of your MPN itself or because you are experiencing side effects from medication.  It can be very distressing to find that others are not understanding the challenges you face.

What you can do

Understand that others might have trouble comprehending and accepting your MPN.

Take a bit of distance from the situation to reflect – what is it they don’t get? Do they need to know as much about blood counts as you do? Remember before you were diagnosed, you too had probably never known about platelets or neoplasms!

Use “I” statements (such as “I feel fatigued”) to explain your feelings and develop ways to communicate your needs effectively.

Connect with the MPN patient community via the HealthUnlocked forum or attend a patient forum, both of which are a great way to share frustrations and support others in the area of potential frustration.