May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope? (Thanks go out to Scott of Strangely Diabetic for coordinating this topic.)
I love being part of Diabetes Blog Week because of the vast array of topics that make you stretch yourself, think and explore new avenues. Today’s topic is one that is very personal and very difficult. I have dealt with some of the dark issues surrounding being a parent and living with a child with diabetes in last year’s webinar “Normal is Just a Setting on the Dryer” as well as throughout my blog over the years.
Most likely you have heard about the strong correlation of diabetes and depression for people living with the disease. Diabetes presents many management challenges in learning how to be a pancreas. It presents financial challenges in being able to afford the best care to be able to obtain your best bg levels. Diabetes is often looked upon as something that the patient themselves caused. Bg levels and A1cs are often judged as “good” or “bad”. It is therefore not surprising that the stigmas and challenges of the disease can quickly become overwhelming.
As a parent, we do not have the same direct issues as our children with live with diabetes but in some respects perhaps its a bit worse because we carry the blame for it all. We ache when our child is having to deal with any of those issues. We desperately want to take all of the pain away from them. We feel that we would gladly carry this disease to save them such pain and anguish.
Parents struggle with their guilt. How did we let this happen to our child? What could we have done differently? Should we have breastfed longer? Was it a vaccine that caused this? Did we pass along faulty genes? It is our job to protect our children and we may feel that we have failed to protect them in the most profound of ways…we allowed them to develop type 1 diabetes.
Now I know intuitively that this is not the case. I know that I did not cause my son’s disease but was it my fault that he was so sick before he went into the hospital? I am educated. Shouldn’t I have known something was wrong? If I am honest, I did know that something was wrong. One day in the summer prior he was pale and sick…but it was just one day and we assumed he had a bug. Before his diagnosis when he had thrush and was not himself, we had taken him to the doctor. He said my son was fine. I did take him back to my own doctor a few days later when things did not improve. I could not have prevented this but still the guilt lurks.
The guilt can get in the way of parenting a child with diabetes as well. We have so many issues swarming in our heads. We have failed our children once by allowing them to get diabetes (yes, parents may have a bit of a God complex), so now it is vital that we work to keep them as healthy as possible. We get frustrated when our children lapse in their care. We become terrified when they are in the care of someone else. Will they be able to manage? We struggle to find a balance between allowing our children to learn on their own and the need to look after them at all costs.
In my own case, there were times that I would reprimand my son for forgetting a meter or strips when I really should have thought of them myself. The frustrations of not being able to keep his bg levels always perfect, of seeing him sitting inside waiting for a low to come up when his friends were playing outside, the injustice of him having to carry so many supplies and medical devices just to go to a friend’s house would overwhelm me and boil over into anger at the silliest things. I would then worry that I had left my child with nothing but horrid memories of an ogre parent.
As my son has grown, I have come to my biggest challenge yet…letting go and finding my new place. For the past 14 years, my one focus has been being a mom. I managed to stay at home with both of my boys as they grew. I was able to devote a lot of my time to diabetes advocacy efforts and the care of my children which included 24/7 diabetes care for my youngest son. My nights were spent fighting highs and lows. My days were spent reminding him to test and bolus and helping him to count carbs.
One day it all changed. My son decided to move back to his home town and felt it was time for him to learn to care for himself. I was lost. I would wake up in the night and there was no one to test. I would sit down at a meal and I didn’t need to count those carbs. Yes, the world of diabetes advocacy still existed but did it still need me? There were many new parents who were just as passionate and they had children at home to speak about.
I had experienced depression before when dealing with a child with diabetes. As I mentioned, the frustration, guilt and anxiety can be overwhelming. I got through with the help of some amazing online friends as well as supports in my life that were there to pull me out when I got too far down. It was important for me to talk to people who lived there and got it, as well as people who had no clue but just wanted me to enjoy life with them. That balance saved me on more than one occasion.
Having my son move away was different. Yes, I had many friends how also had children move away but their children had moved away for school. Their children were out of high school and they seemed to have strong identities of their own. I didn’t feel that way. Yes, I had a strong identity but in part that was because I was a parent of a child with diabetes and I spoke firsthand of bg testing and the challenges of raising him. Who was I now? I was not sure. I had started to expand myself and create a new business venture but it was not heading the way I wanted it to…and then my son was leaving. I was now a complete failure. I had no idea how to get out of the darkness this time.
Once again, my heart knew I wasn’t a complete failure or a bad parent (just as it said I was not the reason my son was diagnosed in the first place) but I still felt that way. The move wasn’t personal it was about a young boy wanting to stretch his wings and go back with lifelong friends rather than continue to hang out with his mother in a city that had not provided the same life-long friends. I had to get over myself. It has taken a lot to get used to the change. It has taken a lot to find my new place even in his life.
I don’t have a cure to get out of the darkness that can accompany raising a child with diabetes. I don’t have an answer that has worked for me. I still stumble and wonder “what do I do now?” I am lucky in that I have a very supportive partner who is patient. I am slowly dipping my foot back into a bit of advocacy work. I am working to find my way in life.
Diabetes is a challenge in itself but it also brings many hidden challenges for those who live with the disease inside of them as well as for those of us who just carry it in our hearts. The only thing we can do is move forward. Seek help when you need it–from friends, from family and even from the medical or counseling community. There is nothing wrong with support. It is the only thing that gets us through and its strength can carry us through anything.