Life with MS

I was diagnosed with multiple sclerosis a couple years prior to our two sons being born. Since MS can be unpredictable, my wife and I made a pact to be open, honest, and communicate about my MS with our children. I also found talking to the kids about MS while I was in remission made it easier for them to cope when I had a relapse. My kids heard their whole life that I had MS, but for majority of their lives they had never seen me in an active relapse. That changed in 2016 when I had a major relapse that affected the whole right side of my body.

They were only nine and seven at the time and had to watch home healthcare nurses come to the house to administer IV steroids. During this time, I could barely get out of my chair without assistance from my wife. I was having problems doing anything on my own, including bathing and dressing. I tried to keep a brave face, but this was the worst relapse I had ever experienced and the treatments weren’t helping as fast as they had for previous relapses.

Still, I thought I had my bases covered. I assured them daddy was going to be alright, but all they saw was that I was stuck in a chair and missing all of their school and sports events. While I eventually bounced back, I was unaware of the toll it took on my kids until the first day of school the following year.

The teacher asked the class to introduce themselves and say one thing about them. When it was my son’s turn, he said his name and then told the class that I had MS and broke down crying. Imagine my surprise when I got the call from the teacher asking if everything was alright, but in my heart I knew it wasn’t.

When you are living with MS, the challenges and struggles of parenting are intensified. How do you tell your children about your illness without overwhelming them? It is important to communicate with your children about your illness. The information you share with them should always be truthful and age-appropriate.

Children are affected by everything that happens in the family and even at a young age, they sense when something is wrong. When a parent has MS, it affects the entire family. The more serious the situation, the more they will be affected. Lying to your children in any way will eventually cause them more stress and make them question what they can trust.

What are the basic facts kids need to know? You do not need to overshare all of the ins and outs of MS but here are some key issues you should explain to your children:

• Tell your kids you have multiple sclerosis.
• Explain to the best of your ability your understanding of living with MS. This would include what a relapse might look like and that, while there are no cures, there are treatments that can help.
• If they ask, reassure them that MS is not fatal and that you can expect to live a long life.
• Keep the information age-appropriate and allow them to ask questions.
• If you don’t have the answers, that’s okay, reassure them that while you may not have all the answers you will do your best to find out.

Parenting Do’s and Don’ts

When we were pregnant with our first child, we read all of the parenting books and made sure we followed all of the recommended best practices. By the time we had our second son, we had learned the parenting books don’t always tell you what to expect when expecting. This is especially the case when one, or both parents, has a chronic condition such as multiple sclerosis.

Books don’t tell you about the added stress and fatigue you may experience as a parent. They also don’t draw the correlation of how these stressors can affect your MS. It is hard to focus on self-care when most of your focus is concentrated on how to care for your child. Most of us learn these lessons the hard way, but if you ask any parent, myself included, having a child is worth it. Having learned these lessons firsthand, I wanted to share with you some of my do’s and don’ts of parenting with MS.

• Do take care of yourself first. Many parents feel like they have to sacrifice their own needs for their children. By neglecting your own health, however, you will not have the ability to care for your children.
• Do explain your needs to your children and ask for their age-appropriate help.
• Do say “No” to your children when you are not able to do something. Explain you are not saying no because you don’t want to do it but because your body will not allow you to do it.

• Do express your emotions surrounding your illness but explain you are feeling angry, sad, scared, etc. because of the illness.
• Do enlist help from family and close friends in your absence. While they cannot take your place, their presence will provide some comfort.
• Do show your children you are still capable of love and your love for them will never change.
• Don’t depend on your children for adult tasks or for adult relationships. No matter how mature your child or teenager is, they are not adults. Never make your children assume the role as your caretaker or as a “parent” to their siblings.
• Don’t ever ask your children to miss school because of your illness. School should be their first priority and consistent attendance for children is essential to their learning.
• Don’t be afraid to seek professional help from a counselor or family therapist if you are concerned about your children in any way.

For more on communicating with your children about MS, see the parent’s guide included in the children’s book, A Conversation About Multiple Sclerosis, available free of charge from MS Focus. Learn more at msfocus.org/Get-Educated/Educational-materials.aspx.