Parenting While Managing a Rare Disease

Parenting can be incredibly rewarding. However, parenting is hard. Both parents and children are human, and there is no guidebook to raising a child.

New trends, current research, and comparison to others can leave parents feeling as though they are not doing a "good" job. All parents face these stresses and demands. However, they can feel even heavier when coping with a chronic illness, like many rare diseases.¹

Millions of people across the country are living with a chronic and rare illness. Many of these people are juggling parenthood as well. On top of their disease, they also may be balancing difficult feelings around how their children are affected.

Every parent living with a rare disease experiences parenthood differently. However, there are some struggles that may be familiar to many people.²

Parenting may look different than you expected

Most people have a picture in their mind of how they expect parenting to be or what kind of parent they would like to be. They might picture being active with their kids and attending all of their events. They may envision being there for all of their child’s milestones. They might imagine being grandparents one day. However, a rare health condition may bring a new reality.³

Chronic illness can bring pain, fatigue, and many doctor’s appointments. You may not be able to be physically active with your children every day. A "bad" day may mean fatigue that keeps you from cooking dinner or playing with your children.³

This does not mean you are a "bad" parent. There are many ways to engage with your children and show them how much you care. It is important to communicate how you are feeling with your kids at a level they understand.⁴

You may have a day where pain makes it too difficult to lift them when they ask. You might tell them something like, "I wish I could hold you today, but mom’s arms are not working well today. I would love to snuggle with you on the couch though." Being flexible and using humor can be a great way to connect with your kids in different ways.³

Your children’s big feelings and fears

Children are often very tuned in to what is happening around them. Though they may not understand the extent of a parent’s disease or why dad is too tired to play today, they may sense that something is wrong. They may not be able to express their feelings or worries. This can look like angry outbursts or sudden tears.^3,4

It can be hard to see children struggle like this. It may be painful and bring up guilty feelings. It is important to validate your children’s feelings, as well as your own. Let them know it is okay to have big feelings sometimes and you understand what they are going through. Encourage them to ask questions.^3,4

Having these conversations makes space for intimacy and empathy. It lets your children know that they can come to you when they are upset. It also gives them a chance to learn about the body, illness, treatment, and resilience.^2,3

Keep your child’s age in mind when explaining your illness to them. It is important to communicate in ways they can understand. Keep it as simple as possible, and make sure your child or teen understands your illness is not their fault. Talk to their pediatrician if you are unsure about what to say or how much to share.^3,4

It is also important to avoid giving kids too much responsibility. The teen years are a natural time to become more independent. Taking on too much responsibility may keep them from getting their own needs met.^1,5

Helping friends or family members who are parenting with a rare disease

Asking for help is hard. It can feel awkward or burdensome to continually reach out. If you have a loved one parenting with a rare condition, it helps to be more direct. By offering specific ways to help, it takes stress off your loved one from feeling like they have to ask.

For example, children who have a parent with a chronic illness tend to have fewer mental and social challenges if daily family routines are consistent. You can offer to pick the child up from school every day, or come over once a week to make lunch and do laundry.⁵

This can look like offering to watch their children because your children would like to have a playdate. It can also look like dropping off extra dinner or asking if they need anything while you are out shopping. Scheduled plans like weekend trips to the playground can give them downtime and company to look forward to.³

The most important thing to do is reach out. If your loved one is parenting with chronic illness, knowing that they have support can go a long way.

If you are a parent living with a rare disease, do not be afraid to reach out to friends, family, or your doctors. There is a team around you ready to support you through both good days and bad days.