There is no worse feeling for a parent than watching your child suffer and feeling helpless to do anything. ME/CFS, fibromyalgia, and Lyme disease and other tick infections affect many millions of children, teens, and young adults and are even more devastating in a young person. As a parent, seeing your once vibrant and energetic child suddenly – and chronically – unable to get out of bed and lacking the energy to play or go to school is horrifying.
The parents in our Facebook group, Parents of Kids and Teens with ME/CFS and Related Illnesses*, say they struggle with countless challenges, including guilt (that constant parenting companion!), feeling overwhelmed, and sadness and loss over what their child is missing. Of course, they are also concerned about their children’s emotional states – how their sick kids are coping, their sense of loss and grief, and very often, depression. Here are some tips on what to do and how to cope, from parents who’ve been through it.
Help Your Child Medically
Believe your kids: Doctors and school personnel will think your child is lazy or avoiding school or a million other excuses, but you know your child better than anyone, and you know how he was before getting sick. Stand up for him and show him you are in his corner.
Act as your child’s advocate medically: Learn all you can about the illness and potential treatments (knowledge is power!) and then educate your doctors. Ask to try treatments that might help your child. If a doctor is unwilling to learn or treats your child poorly, do not go back.
Find doctors to help: There are many treatments available for all of these chronic illnesses, but most doctors aren’t knowledgeable about them. Either take your child to a top expert, if you can travel, or keep looking locally until you find a doctor who will work with you. You don’t need an expert locally – just a doctor who is willing to listen to you and learn from the experts. Assemble your own team – dietician, primary care, cardiologist, LLMD, etc. – who are supportive.
Try, try again: Treatments for these kinds of chronic illnesses require a lot of trial and error – which means you need to have a lot of patience and persistence. If you try something and it doesn’t work or has side effects, then try a different dose, a different type, different timing, etc. We all respond differently, so don’t give up.
Coping Strategies for Parents
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Take care of yourself or you won’t be able to take care of them: Parents report their biggest problem is pouring all their energy into their sick kid(s) and then burning out themselves, physically and emotionally. An hour spent with friends, reading a book, or exercising will pay off for your kids because you will be more patient, caring, and refreshed when you return.
Find support: Ask your doctor and your school to put you in touch with other parents whose kids have similar illnesses. Join groups online for parents with sick kids. Consider counseling for yourself, your child, and your family – look for a counselor who is experienced with chronic illness.
Ask for help: We parents are a stubbornly independent crowd! It’s very hard for most of us to ask for help. Friends and family often want to help you but don’t know what you need, so learn to ask for help and accept it graciously when it is offered.
Experience the grief: It will come in cycles and hit you when you think you have gotten past it. When that anger or sadness or loss hits you, take some time alone – even if it’s just 15 minutes in your bedroom – to let those emotions out, acknowledge them, and feel them.
Balance hope and acceptance: Be realistic in understanding the severity of your child’s illness and work on adjusting your whole family to your new normal. At the same time, never lose hope of a brighter future and keep trying new treatments and reading the latest research.
Coping Strategies for Sick Kids, Teens, and Young Adults
Listen to your kids: They will need to grieve, too. Acknowledge what they are feeling and don’t try to talk them out of their feelings. Sometimes they just need you to listen without trying to fix things.
Celebrate the little things: We have always done this, but it became more important when three of us in our household all had ME/CFS. Celebrate the smaller holidays, like Valentine’s Day, Cinco de Mayo, and even Groundhog Day with special food, simple decorations, fun clothing, and movies or music. Find ways to celebrate regular days, too, like Movie Monday or Cupcake Wednesday! Give your kids something to look forward to.
Find joy in every day: Similarly, cultivate an atmosphere of joy in your home. Help your child notice little things all around: the birds singing out the window, clouds drifting by from your yard or deck, a wonderful book, or a favorite TV show. Get a pet to provide your child with company and extra joy. There will be plenty of bad days but knowing how to find joy in small moments helps immensely.
Keep them connected to friends: This is a tough one because it is often out-of-sight-out-of-mind for childhood and teen friendships. Chronic illness can be horribly isolating, especially for young people. Help them stay connected to friends online, through texting, IM’ing, or SnapChat. Invite a close friend over for a movie night with snacks and a funny movie – your kid can stay on the couch and enjoy laughing with a friend.
Focus on their interests: Your soccer-loving son can’t play right now, but he could have a weekly date with his dad to watch a game on TV. My oldest son loves to read, so we always had plenty of books to choose from here. I know sick teen girls who have quite an online following for make-up videos or who sell handmade jewelry online.
But also give them permission to do nothing: When your child’s body is telling her to rest, she needs to listen…and so do you. Resting and pacing are important factors in managing these illnesses, and pushing your child to go past her limits will only make her sicker. Accept your child’s limitations.
Humor: One of the parents in our group reminded me of this critical component. My son loves to say, “Laughter really is the best medicine!” In the worst days of our illnesses, he and I used to watch old I Love Lucy shows and laugh like crazy. Make your own list of favorite movies, online videos, or TV shows that never fail to get your child laughing and play them when a dark day hits.
Life with a sick child is not easy, but it can be rewarding and full of joy. Find ways to encourage your child’s interests, keep him or her connected to others, and create an environment of warmth and comfort. And don’t forget about your needs, too! Living with sick kids (and a sick parent) actually brought us closer as a family. Accept your child’s limitations and find your new normal, while continuing to search for treatments and hope for a better tomorrow.
* Parents of Kids and Teens with ME/CFS and Related Illnesses. Membership is confirmed through Facebook messaging, so please check your messages after you request membership.
Suzan Jackson, a frequent ProHealth contributor, is a freelance writer who has had ME/CFS for 15 years and also has Lyme disease. Both of her sons also got ME/CFS 13 years ago, but one is now fully recovered after 10 years of illness and the other is in college, still with ME/CFS plus three tick-borne infections. She writes two blogs: Living with ME/CFS at http://livewithcfs.blogspot.com and Book By Book at http://bookbybook.blogspot.com. You can follow her on Twitter at @livewithmecfs.