I was fortunate to interview and have a conversation with Gigi Robinson - Author, Speaker, Advocate, Model, and one of the foremost influencers on chronic illness.
Gigi, age 25, was diagnosed with EDS (Ehlers Danlos Syndrome) at 11 years old and more recently with endometriosis. She recently appeared on The Today Show, promoting her mission: Raising awareness of invisible forms of health issues.
Her new book was featured - ”A Kid’s Book About Chronic Illness.” The book sheds light on lifelong (and often invisible) chronic illness with the aim of fostering compassion, trust, and understanding in both parents and children. It also teaches children how to empathize with those who are struggling.
Interview Q & A -
Wendy: How do you help your child create a new vision when they are not on a “normal” path (e.g., school, social, etc.)?
Gigi: Whatever you accomplish is of value and builds over time. No matter what, a win is a win. All wins are important and worthy of recognition.
Wendy: How can a parent help their child with acceptance and confidence?
Gigi: The child has to come to a realization herself or himself. There isn’t much a parent can say other than to help the child develop different plans for themselves …. Plan A, Plan B, Plan C and so on.
Wendy: How do you help your child with judgement from others because you don’t look sick
Gigi: It is not productive to worry about others but important to know how to communicate with them. You can communicate with others by saying: “When you say……………, it makes me feel……………….
Work on and become comfortable setting boundaries for yourself such as I can only do one activity a day or I must be in bed by 10pm.
Wendy: What is the best way for a parent to let their child voice their feelings about having a chronic illness? Parent’s response to Why Me?
Gigi: “You will be okay” is too generic. Instead, respond with “What can you do today that will help you tomorrow?”
Wendy: What’s the first thing that comes to mind on what parents “should not do”?
Gigi: Don’t doubt your child.
Wendy: What else is important to teach your child?
Gigi: Teach them how to advocate for themselves. Most important is to help them gain the confidence to navigate the world as they grow up.
Provide a comfortable space for your child to try new things such as hobbies. There is nothing wrong with trial and error. Give your child the freedom to always pivot and change.
Let your child know that nothing needs to change within them. They are wonderful just the way they are.
In addition, I’m sharing some important insights from Gigi’s website, book and social posts, as I think they could benefit others:
Living with chronic illness looks different every day
Important to normalize the conversation about chronic illness
Pay close attention to what is going on in your body. Journal it
It takes resilience and courage
Important to set boundaries for yourself (self care)
You have the power to advocate for yourself
Must get through everyday living within parameters you have
You don’t need to change yourself, you are wonderful the way you are
I feel so fortunate to have had this discussion with Gigi Robinson and absolutely love the points in her new book. It is so important to normalize the discussion of chronic and often invisible illness. Please check out her book for yourself and your child.
Book: A Kids Book about Chronic Illness (I do not receive any compensation for promoting Gigi or her book.)
I am not a doctor or therapist. I am not dispensing advice, but simply giving food for thought, discussing my personal experience in relation to parenting a child with chronic illness and the impact it has had on my family. I am not recommending any particular way of parenting; just sharing my experiences. Please consult your physician or personal therapist for issues you are concerned about.