What Parents of Kids with Chronic Pain Need to Know!

I am a thirty two year old mother of one daughter, Kayci who has just turned two. I had a bike accident in my young teens that required brain surgery and later in life chronic pain (the worst invisible illness in my experience.) My chronic pain began becoming unbearable around the age of seventeen. I spent my time either trying to get into the best college (perfectionism is an awful habit) or sitting in doctor’s offices trying to find any relief from the never ending pain I felt. Chronic pain causes: insomnia, depression, anxiety, and hopelessness. I was very fortunate to have an amazing support system through my father but at that time doctor’s were truly baffled by chronic pain and it took multiple (unsuccessful) surgeries, medications, treatments, and endless time searching for help. The good news: I got amazing grades and ended up at a great college to pursue my goal of being a teacher. The bad news is I reached an amazing goal but at a huge price. During my first two years of college I wanted to get the best grades and manage my chronic pain at the same time: impossible! It was truly impossible for me at that time because I had no idea how to manage my pain in a natural way and was a depressed mess with good grades. What are good grades if your health is failing and you think of ending your life on a monthly basis. I reached a point of rock bottom the day I jumped into my car drove from New Jersey to Colorado and dropped out of school. Sadly, no matter where I lived chronic pain followed me. It got worse and worse until I was self medicating and partying with friends on a daily basis just to numb the physical and emotional pain chronic pain brings. At about the age of twenty-one I went to the Mayo Clinic and entered into a Pain Rehab Center. I spent almost a month there learning how to manage my pain naturally and learned that I could live the life I always dreamed despite pain. Following the Mayo Clinic I took a good eight months away from school, bad influences, and pressure. I had to focus on a pain management schedule that would work for me. Had I not taken that time I would not be where I am now.

I ended up getting my degree in Social Work and practiced medical social work for many years until my biggest dream came true and my husband and I gave birth to our daughter Kayci. We are planning on having more children and although I have chronic pain I now know how to manage it without medication and without treatment. It is not easy but I am finally happy. If I could go back in time I would have taken those months or a year off when I was in my late teens. I was scared to tell my family the truth because I never wanted to disappoint them and I believed doing well in school would make them happy. I never realized that all they really wanted was for me to be happy. I have things in my life now I never thought I would have because of chronic pain. It took me a little longer than my friends but they did not suffer with chronic pain. I am married, graduated college with a 4.0 in social work, and am now a stay at home mom working to help those with chronic pain.

If you have a child or teen with chronic pain you need to know that they are not making it up no matter how great they appear on the outside. The best thing you can tell your child is: “I believe you and will support any decision you make to make sure we get your chronic pain under control.” They may pretend to be fine (as most teens do) but you must believe me they are not ok and they your love and support more than ever. If they are willing to work on themselves I beg you to support that decision. No one asks for chronic pain. I have been through a lot of crap in my life including a difficult childhood, three miscarriages, and brain surgery. None of those things compare to the struggle I had for most of my life with chronic pain. I invite you to read my blog from the beginning and share it with anyone you know who either has chronic pain or is a caregiver of one with chronic pain. I look at my little two year old now and know I would do absolutely anything to take her pain away. A parent’s love is so strong it hurts.

This post is dedicated to Katrina: a teenager who has more potential than I ever did at her age.

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What Parents of Kids with Chronic Pain Need to Know!

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8 thoughts on “What Parents of Kids with Chronic Pain Need to Know!

  1. Lisa Cooper says:

    So during that eight months after the Mayo Clinic, what were you doing Jess? Did it lessen the pain or just give you a chance to learn how to cope with it? My 13-year-old son seems to be in just as much pain since we started homeschooling, but I think he’s having fewer nasty pain spikes because he doesn’t have to deal with the stresses of brick and mortar school. I wish he’d eat better and exercise, but pushing him only stresses both of us out.

    • Hey Lisa
      Sorry just getting back to you. While at the Pain Rehab Center (MN) we had a specific schedule we went through daily. Once I returned home I was not “cured” well I have never been cured clearly but I took those eight plus months and practiced managing pain naturally every day. That was my full time job. I even wrote out a daily schedule to implement into my life so that it was engrained in me and it did wonders.
      I’m so sorry you and your son are having such a hard time. I wish there was a pain management program for him. I wish I could help more. If there is anything I can do plssss tell me!!!!!

  2. Thank you so much for writing this. It has given me hope that even though I have chronic pain I will still be able to accomplish things in my life. One of the things chronic pain has made me most worried about is if I can really fulfill my dreams. Your post gave me hope that it will get better. I am in university now and I am doing well academically with a lot of extra effort, but I am a mess medically. I am debating whether to take some time off to manage the pain or suffer through school. The latter is so hard. I am glad taking the time off really helped you live to your full potential. Thanks again for sharing.

  3. Lisa Cooper says:

    Thanks, Jess. It helps to hear from people who have chronic pain that full time work or school may not be possible, at least at first. Much of the medical world is telling me my husband and I are enabling our son by not pushing him harder. We’ve lived with this kid his whole life. He is not a slacker. I hate that there are days when the pain is so bad he can’t get any schoolwork done because he can’t concentrate.

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