It is often said that Multiple Sclerosis is considered to be a “me” disease, in the essence that it is difficult to help others understand exactly what we manage on a daily basis. It can feel like a very isolating illness to many. I’ve recently been speaking with other Patient Members about their role as not only someone living with MS but their role as Parents as well. Now if you don’t have children I believe this topic is still widely applicable. Living with a progressive chronic illness can often feel daunting and intimidating. But it doesn’t necessarily have to be something that we manage alone, although the stubborn “I can do it myself” parts of us may rear their intrusive heads.
But what if we included our kids in the discussion about our disability? You may be thinking “Oh I wouldn’t put such an emotional burden on my child.” While yes I understand the instinct to shield our kids from any hurt, I also believe in the ability to empower, encourage and inspire them to overcome any obstacle that may be placed in their way throughout life. Come on. Life is not always sunshine and rainbows but with an alternative approach any situation can be viewed from a different lens.
But most importantly I feel it's more harmful than good to lie to our kids or hide our truth from them. First off it’s ridiculous to lie to them about a serious problem with one of their parents. It’s not allowing them to have the tools they need in life in order to navigate through something hard or difficult. And I feel it may set them up to fail if at any point in their lives they develop a chronic health condition.
Is there a healthy way to involve them? YES!
So where do we start the narrative with our kids about the reality that their Mom or Dad have Multiple Sclerosis? I have found through my own personal experience that it has been empowering, educational and has allowed my family to actually become closer than ever.
My husband and I felt it necessary to explain my diagnosis with Multiple Sclerosis to our kids because they would eventually see me on my worst days or walking with a cane and we knew a billion questions would flood their little minds. So we laid everything out on the table and allowed them to listen and then ask as many questions as they wanted. This allowed them to be a part of situation and feel like they had a sense of control by having no question off limits.
Lead the conversation with something like:
“Mom/Dad is a strong person and we won’t let this get us down right? We’re going to fight this as a family and conquer together okay?”
Telling the truth isn’t going to cause them to have anxiety or end up “screwed up”. That’s ridiculous. It’s allowing them to develop empathy, understanding and patience for someone they love and support. Trust me…you’re actually making your kid stronger.
I wanted to share how my Husband and I handled sharing my disease with our littles. We sat them down and explained through photos and used language they would understand. It took them quite a few attempts at pronouncing “Multiple Sclerosis” but it honestly became quite a fun discussion with lots of laughing. I knew I didn’t want to go into the discussion with doom and gloom, but with optimism and strength. The dialogue went something like this.
“Well babe, I know you’ve both been a little confused by seeing Mama use a walking cane and going to lots of Dr’s appointments recently. Well the good thing is that the Dr was able to find some answers and I have what is called Multiple Sclerosis.”
Of course this is where they tried to pronounce it and asked what that meant.
“Multiple Sclerosis or MS is a neurological disease that affects the immune system and changes the way my body works. Think of your body like a computer. You know how computers act funny sometimes? It’s sorta like that. Your neurological system is kind of like your body’s computer. Well my computer is glitching is all.” “So this means that Mama will be really really tired sometimes and may have some trouble walking on her own. This just means Mama has to do things a bit differently now to keep her computer functioning at its best!”
We then moved on to asking if they had any questions. To our surprise the response was pretty amazing. It was full of:
“What can we do to help? Can I pick out a cane for you to use? Can we watch some videos on MS? If you’re in a wheelchair can I ride on your lap? We can nap together when you get tired if you want Mama.”
It was truly an incredible experience. Our kids have learned so much about the importance of health, healthy eating, physical limitations and when to listen to your body and set boundaries to better your health and well being. They have learned empathy and how to be positive in the hardest of situations. Even when they see me at my worst they are extremely helpful and understand that it might be more of a “Daddy Do” day where my Husband takes over the dinners, chores etc.
I asked my son this morning before I began writing this article how he feels now that he’s 12 and knowing everything he knows about how I live with MS. To quote his response:
“It feels good to know what’s going on instead of you keeping it a secret because I get to help you when you’re having a bad day. I really like helping you because it's how I can give back to you.”
While many of us want to protect our children from anything upsetting, it can be a great character building process to involve them in the reality of life’s difficult situations. I’ve spoken to so many parents living with MS who have had the same experience and the support that their children offer is remarkable and beautiful. I encourage you to try an open communication platform with your kids. Of course depending on their age bracket, the narrative may alter to fit their understanding but the end result is the same. Your kids love you. They feel more confident when they understand better. They love to be a part of the solution and they only view you as the warrior that you are!
