Life as the Primary Caregiver: Insights from a Rare Mom

In the rare disease space, a full-time caregiver of someone with a rare disease has a unique mindset. There is often compassion, love, and unwavering dedication to make sure that their loved one is happy, healthy, and living their best quality of life.

Through my journey, I have learned that life is not fair, and sometimes, all we can do is hope for the best. Though I am no expert, here are some small insights from a rare mom.

Solo advocacy and decision-making

Even if there is a lack of support, the medical decisions and responsibilities don't stop when you are a caregiver for a loved one with a rare disease. As the main caregiver, I also become the main decision maker, advocating for the proper services to be put into place.

Being proactive and starting services when minor symptoms appear has improved my son's abilities and quality of life. Proving the need can be a fight, but I have seen it is possible with proper documentation.

Support networks may look different than you expect

Some may say those in your immediate family should be your biggest supporters – that these people should back you up when you need it and work with you along the way. However, this does not always happen. Some caregivers are truly doing it all.

In my experience, my main support system has been care coordinators, hospital staff, and specialists. These types of relationships have allowed me to gain access to resources, have emotional support, and gain expertise knowledge. I have found that asking questions is the best way to access to these resources.

We are capable of more than we know

Being a caregiver to a rare disease child is hard work. Somed ays, it takes all of your energy. Celebrate and recognize yourself for what you bring to the table.

Though I do not like doing anything solo, I have learned that sometimes, it's the only way things can get done. Through my years of caring for my son I have learned what I am capable of and what I can overcome. You can do this, too.

Balancing roles and responsibilities

Over time, caregivers learn to wear many hats and take on more responsibilities than we can count. Things that once overwhelmed us eventually became second nature. Multi-tasking becomes the only way to get things done.

Learning all of this has not been easy. Looking back at the last 7 years, I hardly recognize myself. So, although I can't say what will work for you, what I will say is that it comes with time. I am no expert in any of this, but having a positive attitude can change things. Just cross 1 (or 2!) things off the to-do list at a time and make sure to take care of yourself, too. You deserve it.

What do you or someone you know do to get through the challenges of having a spouse or partner who isn't actively involved in the everyday responsibilities of having a child with a rare disease?