The Loneliness I Feel as the Parent of a Child With a Rare Disease

Having a child with a rare disease like Hurler’s syndrome, we are extremely lucky as we have a huge network of support. We have had a ton of family, friends and even strangers surround us with prayers, support and positive energy when we face various complications and issues with our son. Additionally, I am part of the MPS community both in real life and on social media which provides me with a network of people who “get it” and understand the ins and outs of this journey on a deeper level because they live it too. I also have a large family and friends both in the MPS world and not in that world who I can reach out to when I need it.

I am so grateful for the number of people I have supporting my son, myself and my family.  There are many avenues of support I can reach out to when I need it, yet I am still struck by how lonely I still sometimes feel on this journey. Loneliness is a funny thing — one day it slowly creeps over you and another day it just slaps you in the face.

When your child is being diagnosed with something you have never heard of and cannot pronounce, it is hard not to feel alone. You are overwhelmed by the information coming at you from doctors and specialists. Being fully invested in learning about the disease, you do your research and then become the source of information for family and friends about the disease and your son’s journey.

You try to share as much information as you can and try to stay positive for them, but at the same time, you want to be held up by someone who has walked the path before you.  You want to feel like you have someone to help guide you and even if you find people who have gone through this diagnosis, sometimes it still doesn’t help you feel less alone in the journey.  The downside to everyone having a different journey with the disease is that there are some surgeries/complications/issues that you might not be able to find someone else who has gone through it to guide you. There will be some cases where you are the first to cope with the issue in the unique way you do.

There were many days/nights sitting in the hospital with my son while he was in pain or struggling that I felt alone. He needed and wanted me and I was trying to give him as much strength and support as I could but I felt so depleted myself.  I would update family and friends and try to keep things more upbeat and positive even if I was not feeling it. At times I felt like it was my job to protect everyone from the daily harsh realities of what we were going through. By doing that I found myself stuck with the bad thoughts, feelings and fears and felt even more isolated and alone.

I am one of those people who is very bad at self-care, and even when family would come to give me a break, I did not always know what to do for myself. I knew how to care for my son, how to worry, how to plan, how to ask questions, but I did not know how to lean on others, ask for help, or sometimes even accept the help that was given. Even now asking for and accepting help and support is hard for me.

Years after his transplant, I can still say there are times I feel alone. No one else is in the exact same position I am in when it comes to my son, his diagnosis and my other children. I feel like the responsibility of getting and processing new information, scheduling and planning appointments and a majority of the major decisions fall on my shoulders. Not to say my husband does not help, but I tend to be the one that carries most of the responsibility for my son’s rare disease care. This is on top of my roles as a mother, spouse, daughter, sister, employee and friend.

I am grateful that I have gotten a little better at self-care and at sharing what I am going through, but in my experience, loneliness while coping with your child’s disease never really leaves you. You can be surrounded by tons of family and friends all wanting to support you and yet still feel like you alone are the one coping with the disease and dealing with the ramifications of the journey. I am grateful for my network and my support system, and it is no fault of theirs that this journey still has me feeling like I am fighting a battle by myself.