9 Tips To Help Manage Anxiety Over Your Child’s Chronic Disease

When I finally digested that my son Caleb had a chronic disease (Crohn’s) and that he would probably have it the rest of his life (although I’m crossing my fingers for a cure), I knew at that moment, our family would never be the same again.

You know, what they say is true. Once you have a child, you never sleep soundly again. What if he chokes? What if he gets sick? What if he never makes any friends? The worries go on and on.

When you add into the mix a chronic disease, even for the most sturdy of parents, it can be overwhelming (and that’s putting it mildly). Just the thought of your child suffering, struggling or god forbid dying, is enough to put any parent over the edge.

Chronic disease is life changing and coping with it, I know for me personally, requires a level of strength and courage I never knew I had. If it wasn’t for the sheer necessity of having to get up every morning and take care of our children, I know many of us would just fall apart. And we still do. Thankfully, there are support groups out there with other parents in the exact same boat, who help pick up the pieces, who soothe our worries and reassure us that our children will be ok (thank you SCD Families)

Ten to 20 million children live with chronic disease in the United States today, (according to the American Academy of Pediatrics). Chronic illness is a health condition that is either persistent or develops over time. Common examples include Crohn’s, Celiac, Anemia, Asthma, Cancer, Cystic Fibrosis, Diabetes, Epilepsy or Juvenile Arthritis.

More often than not, when a child is diagnosed with a chronic disease, it means redefining “normal” for your family. Whether your child has to be on a special diet (like Caleb), or has to have weekly injections, or special medications, or can’t go and do the things most kids do, it means a new way of life. This is hard for the child, but also for the parents.

Do you feel anxious, guilty, aggressive, angry, sad and on edge? These are all very normal feelings, but ones that will make us sick if we persist and certainly aren’t good for our kids.

I know for me personally, I have to consciously force myself not to worry about Caleb’s bathroom habits. I know it sounds crazy, but all you moms out there with IBD kids understand what it’s like to worry every time your child goes to the bathroom. If Caleb’s tired one day, is it because of Crohn’s or is he just tired because he is an active teenager? I could literally drive myself crazy, and I do sometimes.

I’m not generally an anxious person, but there are a lot of parents who are. What if you already have anxiety issues? It’s tricky to know how to cope if you are already an anxious parent.

I know for a fact that Caleb picks up on my anxiety and it makes him anxious and upset. It’s proven that stress makes illness worse. I did some research and came up with what I think is a pretty good list of tips to help reduce anxiety and ease the worry for parents with kids with chronic illnesses. So, with that said…

Here Are 9 Tips To Help Reduce Anxiety Over Our Kid’s Chronic Disease

#1 Educate Yourself

For starters, learn everything you possibly can about your child’s illness. And I don’t mean just from your doctor. Get on the Internet and research. Some of my most helpful information has come from other parents with children with the same illness. Many parents have been managing their child’s illness for years and they have insight and wisdom doctors will never have. The more education you have, the less your stress and anxiety will be.

Write down a list of questions to take to your next doctor’s appointment to get answered. Also, there are lots of good books out there for kids to help explain their illness to them. Find one for yourself as well.

#2 Join A Support Group

I remember when my daughter was diagnosed with PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections). At the time, it was a rather unknown, controversial autoimmune illness and the doctors couldn’t or wouldn’t diagnose it. I joined an online Facebook support group, which “saved me”. Other moms with children with PANDAS validated me and the symptoms my daughter was experiencing. It was a very stressful and emotional time for us and talking with other wise mothers whose children had PANDAS helped me get her diagnosed and ultimately get her the medical help she needed. This group supported me for years and I am still in contact with many of the moms.

Today, I am part of a very supportive Facebook group online called SCD Families, for parents with children who have IBD (either Crohn’s or Ulcerative Colitis) on the Specific Carbohydrate Diet (a restricted diet that eliminates grains, gluten, sugar, complex carbs and preservatives from our kid’s diet). “We share scary moments and happy moments, we share our fears and our missteps, we help course correct and we encourage one another in this journey”. We all draw a great deal of comfort and support from each other and I highly recommend finding a similar group for whatever chronic illness your child has.

#3 Take Care Of You

The physical and psychological demands of caring for a child can be tremendous, and this applies even more to those with sick or disabled children. It’s important to remember to nurture yourself in the midst of all of the chaos. After all, in most cases, you are the primary caregiver and the glue holding the family together. If you fall apart, everyone falls apart.

  • Make sure to get a good nights sleep every night
  • Create a daily exercise routine and follow it
  • Don’t skip meals – eat healthy nutritious food
  • Schedule time for relaxation and a break from parenting and household chores

#4 Get Organized

Create and follow a plan of action for treatment and care. It’s often difficult, especially in the beginning after a diagnosis, to keep track of all of the doctor’s appointments, medications, supplements, foods, symptoms, reactions etc. It can all feel very overwhelming. I found the only way to keep track of everything was in a journal. I started a journal with my daughter’s PANDAS diagnosis and today it’s over 100 pages long. This journal helped me remember what medications she had been on, reactions to medications etc.

#5 Meditate

Meditating for as few as 10 minutes per day can help control stress and decrease anxiety. For many, meditating seems foreign and untenable, but it’s really not. I found this great app called Insight Timer. It’s not only free, but also the most popular meditation app out there, has 5300 guided meditations, has over 2 million meditators and is really easy to use. I started using it and am addicted to it. I’ve now started meditating every day – am listening to wonderful teachers in guided meditations (some are only 8 minutes long, others 20 minutes). I find them very relaxing and there is no question my stress is diminishing.

#6 Listen To Your Child

Your child is going through a lot emotionally, so its important to be open and listen to her, both verbally and non verbally. She might not be able to express what she is feeling, so be patient and do your best to help her constructively express herself.

#7 Advocate For Your Child

For years, we’ve been taught to revere doctors as representatives of a sacred vocation and to never second-guess their opinions or ideas. It’s important to listen to doctors, but just as important to get second opinions and to question their diagnoses and advice. Never be afraid to advocate and stand up to your doctor.

In an era when rates of obesity, diabetes Inflammatory diseases are skyrocketing, its beyond comprehensible that only 27% of U.S. medical schools actually offer students the recommended 25 hours of nutritional training (according to a recent perspective piece in Academic Medicine). 25 hours out of 4 years of medical school! Training at the postgraduate level also follows suit. The word “nutrition” isn’t included in board examination requirements for internal medicine certification, and cardiology fellows don’t need to complete a single requirement in nutrition counseling.

So, with that said, do your homework and advocate for your children. Doctors know only what they have been taught and diet therapy and nutrition isn’t part of it.

#8 Be A Parent

Don’t forget to be a parent. Try to continue the family routines, maintain structure and discipline. Don’t forget to always try to bring joy and fun into what you do with your kids. They pick up on your energy and if you are light and positive, then they will be as well.

#9 Never Lose Hope

Most importantly, never lose hope. Sometimes, I forgot this and needed reminding, but there is light at the end of the tunnel. Today, I am blessed and happy to say that both of my children are doing well and so I have dedicated myself to helping as many other parents (and children) as I can through Caleb’s Cooking Company.

I remember those dark days. I remember being so depressed and feeling like my life and the wellness of my children would never improve, but it did. Today, I read anxiety, panic and desperateness in other parents’ words and it breaks my heart. I try to reassure them that there is hope, and to take each day as it comes.

We are all in this together. If you ever need a helping hand or reassurance in any way, please feel free to email me at cfrei@calebscookingcompany.com.

Named after Cindy Frei’s son Caleb, who has an autoimmune illness (Crohn’s) and is on a restrictive diet, Caleb’s Cooking Company sells healthy fast food (pizzas, chicken nuggets, enchiladas etc.) that is organic, grain and gluten free. Their food has no added sugars and is 100% free of GMO’s or preservatives.

This article was republished from Caleb’s Cooking Company blog.

See also:
What Does The Environment Have To Do With Diseases That Affect The Immune System?
The Upsides Of Being Open About Chronic Illness At Work