The Dark Side of Rare Disease

In honor of Rare Disease Day 2016

The Dark Side of Rare Disease

It’s February 29, 2016…Rare Disease Day! So today I challenge you to give a gift to the dark side of rare disease!

The last day of February each year, the world recognizes rare disease and the impact these 7,000 unique illnesses have on patients, caregivers, physicians, drug companies and our entire heath care system. Today is the day we raise the flag of awareness to advance hope, elevate awareness and provoke engagement. That’s the upside of rare disease day!

Inside each home and family impacted by rare disease, the story of awareness is secondary to another much, much more difficult story…the emotions, the physical reality and the economic impact of sickness. This is the dark side of rare disease.

Rare leaves you LONELY.

When despite best efforts no one really understands your rare disease, having a rare disease is lonely. Even though people may ask how you’re doing, their inquiry is usually phrased in terms of a comparison to getting better. There is no cure for most rare diseases; there is no better. We need genuine moments of understanding and friendship.

Rare finds you FEARFUL.

When your body regularly fails and your world isn’t safe, facing rare disease every day takes courage beyond what’s recognizable. Your paradigm for the world must be different, because you often cannot do normal everyday activities in the same fashion as others. We need safety. We need accommodations to be commonplace and offered generously by others.

Rare makes you ANGRY.

When your world keeps shrinking because your illness demands center stage, illness can be infuriating. You want to do and be more, and illness stands in your way. Treatments are few and medications are expensive. In most cases, medical goals for rare disease include increasing coping skills and decreasing pain and illness, not fixing the problem. We need an enlarging world. We need real hope. We need cures.

Rare keeps you CONFLICTED.

When to do simple daily tasks, you must choose between health and illness, having a rare disease can feel like daily sacrifice. In order to stay as healthy as possible, you cannot live a “normal” life, but where do you draw the line? When should you accept the consequences of increased illness to do something like work, or play or be there for your family? We need a compass to point us toward the most important choices. We need compassion.

Rare runs you TIRED.

When your emotional and physical resources are regularly operating on empty, rare disease can leave you exhausted. To get up and get to work or school can take an extraordinary amount of effort some days or every day. And emotional fatigue can be even more draining. We need borrowed energy. We need boundaries. We need an extra dose of kindness regularly.

Rare holds you BROKE.

When the cost of insurance, medications, therapies, travel to specialists and daily medical needs mount, rare disease can leave you without adequate financial resources. When you have a rare disease, you plan to go without. With illness, it is more important that you purchase medicine than new clothes. And with rare disease, it’s vital that you spend your money and vacation hours on traveling to specialists, not getting away on the perfect vacation. We need better financial options. We need better medical insurance. We need financial help.

Who do you know with a rare disease? Have you considered that along with the courage, character and strength that are built through struggling with rare disease, there is a dark side?

In honor of Rare Disease Day, I challenge you to give someone who has a rare disease one or all of the following:

  • Friend-filled understanding
  • Life-changing accommodations
  • World-enlarging hope
  • Choice-making compassion
  • Your own physical energy
  • Your financial help

Turn the dark side around and give someone with a rare disease HOPE!


Author’s note: three members of our family have a rare disease, including Mast Cell Disease, Ehlers Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome.



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