Why Caregivers Feel Isolated
Being a rare caregiver comes with many challenges that the community as a whole can't relate to. Though every rare family is different, I think many of us would agree that this life brings a lot of isolation to our lives. We often feel alone and misunderstood.
Coping with lack of peer support
In the rare community, caregivers of children with rare conditions often struggle to connect with other families. If you are fortunate enough to connect with someone else in the community, consider yourself lucky. It has taken me 7 years to find people who understand my life and everything that comes along with it.
Friends faded away
The majority of my other friends have faded away because they are either intimidated by the needs of my family or don't understand the challenges I face. The friends I do have are rare friends – the ones who get it, but who don't live close by. When other groups of friends are going out on the weekends, we hang out virtually, maybe seeing each other a few times throughout the year at rare disease conferences. Typically, this is the only time we manage to escape our day-to-day responsibilities.
What other rare disease friends mean to me
But at the end of the day, their support is the most beneficial to me because these people get it. I never feel judged. I always feel listened to. As a rare family, you most likely will never be able to fully relate to what everyone in your group of support goes through, but having that support in place is crucial for your mental health. They will get you through the difficult days just by being there.
Being a resource is stressful and tiring
As a rare disease caregiver, it is not easy to find information, resources, and specialists who truly want to help. In my experience, navigating the healthcare system is a constant fight. Finding professionals who truly are interested in learning more about a rare disease is rare. We caregivers are often forced to be a never-ending resource; this is a huge load to carry.
Over the last 7 years of being a rare caregiver and mom, I have found myself being the one to educate not only professionals on my son's disease but also other families. While I have found my true passion within this, it is often an added stress to my everyday life. I find myself repeating the same things over and over again, which gets tiring.
This or That
Do you live with a rare disease or care for someone living with a rare disease?
It is a struggle to get through the day
Even the most joyful caregivers in the rare disease community still struggle daily to navigate care for their child. The rare life brings constant feelings of grief, loneliness, and sadness. It never ends, and the feelings can be very difficult to manage some days.
Those who see me from the outside don't know how much I struggle every day. I have never been one to cry. But I have found tears are a new part of my life. My head feels like it's spinning from the moment I get up until the moment I go to bed, worrying about the future and what's to come, what fights I will face, what new tests we will need, and who I will have along the way to support me. Getting through the days has become harder and harder.
What parts of caring for a rare disease warrior has impacted your relationships most?
No day will be perfect
Through this journey my son and I have faced, I have learned that some days, there is nothing to accomplish besides just getting through the day. Recognizing when you are grieving, lonely, and sad and taking a break to validate those feelings can help make a positive impact the next day.
Some days will be easy. Others will be really hard. No day will be perfect. Often, what gets me through the days I am struggling is listening to Effie Park's Once Upon a Gene podcast and taking a walk around my neighborhood. However, some days, I sit on my couch with a big bowl of popcorn and just watch movies. That's okay, too.
Are you a rare disease caregiver? Have you experienced any of the feelings that Alex writes about in this article? Share more in the comments below.
Have you taken our Rare Disease In America Survey yet?