chronic illness

My Turn Being The Spouse, Not Patient: Importance of Caregiver Support



My husband and I are both spoonies. John has been type 1 diabetic since he was 8  years old and has spent every summer for the last 20 years at Camp Carolina Trails, a summer camp designed to educate and empower young people with diabetes. He started out as a camper and is now the assistant director. One of the things that inspires me the most about my husband is his dedication to raising awareness and and support for those living with diabetes. His motto is “diabetes is a gift, not a curse” as he sees his diabetes as a way to minister and serve others. Health activism is something we feel deeply passionate about and it is awesome to share this passion and support and encourage one another along the way.

In the 12 years that John and I have been together, we have been lucky to not encounter any major scares outside of the “normal” highs and lows that accompany life with diabetes. No passing out from blood sugars that are too low or hospitalizations from ketones. We have never even had to visit the ER.

Until last week.

After entering the wrong bolus amount on his insulin pump, we were very concerned about the possibility of a dangerous low so we headed to the ER to be safe. Thankfully other than Zofran for nausea, John did not require any other intervention but were glad that we made the trip just in case.

Even though it was only an IV, I absolutely hated seeing John poked and prodded and not feeling well in the hospital bed. I just wanted to make him feel better and would have easily taken his place if I could have.

It was in that moment that I realized what John has had to endure during my many surgeries and hospitalizations over the last 12 years. It hurt to watch my husband get an IV but in the scope of things, I had it easy.

I never had to kiss my husband goodbye and watch him get rolled away to the OR. I never had to sit in the waiting room for hours waiting on a call from the doctor to give an update on my husband’s surgery. I never had to sleep in those unbelievablely uncomfortable chairs while my husband was in a hospital bed and hooked up to machines. I never had to get a phone call telling me to get home as soon as I could because my husband had just been readmitted due to complications.

I cannot even begin to imagine what it must have been like to be in his shoes not only once but time and time again.

I know what it felt like to go through countless appointments, treatments, surgeries and hospitalizations. I know what the physical pain felt like. I know how emotionally, mentally, and spiritually exhausting chronic illness can be. I know what it felt like to be the patient.

When you are the patient, I think it is easy to overlook the experience of the caregiver because we can so easily become wrapped up in our own. It is easy to underestimate the burden and exhaustion that comes with being a caregiver and the helplessness one feels when you have to see a loved one suffer and not being able to fix it. It is easy to not see the loneliness that comes with the job of caregiver. The pain and grief of chronic illness is not limited to the patient.

Last week served as a powerful reminder of the importance of caregiver support and deepened my already vast appreciation for John as my husband and my caregiver. I am positive he never imagined that it would be  a role that he would have to take on so early in life but the love, attention, and support he provides is what gets me through the day. I am so thankful for him every minute of every day and thank God that He gave me such an amazing partner to walk through the journey with me and even carry me when I couldn’t move forward on my own. There are not enough words to describe how lucky I am to have him as my husband, how proud I am to be his wife, and how inspired I am by him each and every day.

Have you ever had to take on the role of caregiver? If so, how has it changed your perspective of chronic illness?

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