5 Rare Life Challenges: A Caregiver Perspective

As a rare mom, I do my best to hold my head high and remain positive. But the reality is, it's extremely hard.

The general public is not well-educated on rare diseases and special needs. Through our children's stories, we can slowly make a difference. Sometimes, community support and understanding are all we need to get through the day.

Challenge #1 - Stuck in fight mode

Caregivers are often stuck in fight mode. We fight for basic accessibility rights for our children. We deal with challenging educational systems and healthcare systems that deny claims. As hard as it may be, fighting in every area of the system is important. By doing so, we are going above and beyond to improve the quality of life for our children.

Tip: Be confident and know you can handle anything that comes your way. Challenging the system is something most do not have the energy to do.  If you take the steps to do this, you are paving the way for others.

Challenge #2 – Exhaustion

The constant need to assist and supervise our children can be emotionally and physically draining, leaving us exhausted at the end of the day. Although this is just part of the rare disease and not our children's fault, it doesn't make it any easier. 

Typical parent breaks might be nonexistent for us because of the complex needs of our children. The rare life takes a toll on our mental and physical health, adding additional pressure and stress to our everyday lives.

Tip: Make a to-do list every day of the top 3 things you need to get done for your child and the top 3 things you need to do for you.

Challenge #3 – Financial strain

Regardless of insurance plan, many of us feel the financial strain of specialized care and support. Finding the "right" people who do things the "right" way is often expensive. 

Not all, but many of us caregivers have had to give up our careers to make sure our child receives appropriate services, which can result in a huge loss of income and force us to live paycheck to paycheck. We now have a full-time, unpaid job.

Tip: Some ways to make money from home could be contracted work, freelance opportunities, paid caregiver programs, and Medicaid gas reimbursement.

Challenge #4 – Social interactions

In my experience, rare families are often judged and stared at when attending public places or events. This can lead to frustration, isolation, and feelings of insecurity. Though easier said than done, it is important for us to validate our feelings and stand up for ourselves and our children, which also teaches others the importance of inclusion.

If it seems someone is staring, you could say, "My child's name is ________, and he has _________." This not only shows confidence in you but also educates someone about your child's rare disease.

Tip: When attending social events that may trigger your child, plan for how you can make the setting more comfortable and less stressful. Some ideas are:

• Bring comfort item(s) for you and/or your child
• Identify a safe space as soon as you arrive that both of you can move to in case of a stressful situation.
• Be flexible with your plans. Be willing to leave early, if necessary.
• Remind your child and yourself that you did a great job.

Challenge #5 – Finding the right support services

In my experience, rare disease and special needs community members struggle to find the support services that fit their needs. I have found that state-based services have decreased since the pandemic, leaving people without the care they deserve. If you were able to access services, chances are it took you a few trials before finding what works. Having a community-based caseworker can be a great start to finding resources in your area.

Tip: See what resources are available through advocacy organizations, community programs, government and social services agencies, and parent support groups.

What challenges has a rare disease brought to your life? Feel free to vent, share tips, or ask questions in the comments below.