Living with a rare disease is like running uphill over one hurdle after another. Fatigue and pain come with the territory. On top of that, there’s the extraordinary effort needed to manage your health, pay your bills, hold down a job, and face the problems and hassles of modern life.
These energy-sapping challenges, however, are the least of the worries for rare disease patients with children. Because every day, their main focus is summoning the strength, perseverance, and empathy to help their children cope with the uncertainties, grief, sadness, anger, despair, and fears precipitated by the disease.
Fortunately, we have many amazing people in our community who can guide and inspire parents with rare diseases to overcome these obstacles and live their best lives.
Let’s face it – good parents will always put their children’s needs ahead of their own. But it’s likewise true that when you’re so run down and frazzled that you can’t even think, you’re in no condition to care for anyone else. By taking better care of yourself, you will not only be a better parent but also a better partner, friend, and co-worker. Finding the right balance between self- care and self-sacrifice can be tricky, and you might find it reassuring to know that no one gets it right every time. Here are some ideas and tips to give yourself the attention and care you need to be a better (and healthier) person and parent.