3 Ways You Can Help a Rare Disease Caregiver

I am not going to lie and say that being a rare disease parent is easy. It is often a challenge for me to get through the day. I feel like I am on the verge of breaking emotionally. Often, being told the hardest battles are given to those who can handle them makes me so frustrated.

But what choice do I have? What choice does my son have? This is our life and we have to make the best of it. Neither of us asked for this, so we force ourselves to be positive, taking our story and showing the community anything is possible with a bit of hope and dedication.

The daily challenges for a rare disease parent

There is no way to sugar-coat the day-to-day of a rare disease parent. For me, it is stressful to manage the appointments, household responsibilities, and other children. Add in a lack of support from a spouse, and I feel alone. It takes a toll emotionally and mentally. It's also heartbreaking to watch my child struggle through the ups and downs of their disease, always convincing myself I'm not doing enough.

People will often tell me I am a hero, but in my opinion, my son is the hero. I am the lucky one to watch him achieve milestones that professionals once told us we would never get to.

3 ways you can help a rare disease caregiver

Seven years into this rare disease journey, I have accepted that it is normal to feel like I am walking this path alone. Not many can relate. My friends are intimidated. My family members don't understand.

However, I realized that asking for support from your people is okay and necessary.

1. Ask about and listen to our challenges

As rare parents, we live in a season of uncertainty constantly. We have fears and stressors that most people can't relate to; therefore, it's almost normal for us to keep them to ourselves.

Asking about our current challenges and listening to us vent is almost the second-best thing you can do. Even if you can't relate, being an active listening ear allows us to be vulnerable and express our emotions that we often have to hide to keep pushing through.  

Some examples of this could be asking what our goals are for the coming week or checking in at the end of the week and asking about the challenges we faced.

2. Be encouraging

When caring for someone with a rare disease, it is very easy to lose a positive mindset. Life can be draining, and we often slide into periods of losing hope.

Helping your family member find ways to take care of themselves while also making sure the patient's needs are taken care of can make a huge impact. Some examples of how you can do this are:

• Help us find respite services that provide in-home support.
• Help us look into new therapy approaches, such as horseback riding. This allows us to have fun while doing therapy.
• Help us find a new in-home activity to try!

3. Help the caregiver achieve their goals

Most caregivers are forced to give up their careers and passions when having a child with a rare disease. We put ourselves on the back burner so that our children have a chance of living their best quality of life. Eventually, we can lose ourselves and feel stuck in the caregiving role forever.

Reminding us that our goals in life are just as important as our child's care can help us begin to rebuild ourselves. Some examples of how you can help us with this are asking us about our goals and passions, helping us figure out what we need for ourselves and what our children need from us, and finding a way to bring those together in one.

Are you caring for a child with a rare disease? What are some ways that others could help you? Do you identify with anything listed here? What else would you add? Share in the comments below.