What 8 Years of Chronic Illness Has Taught Me…Or A Look On The Positive Side
My oldest son just turned eight last week, which is a wonderful, happy time for my family. However, with the happiness that comes from seeing him grow into such an incredible person who I truly enjoy spending time with, comes the anniversary of my autoimmune disease diagnosis.
You see, up until I had him, I was a very healthy, active person. I ate really well and exercised regularly. I had a perfectly healthy pregnancy and a so-so delivery. He slept like a dream starting at eight weeks so I never even experienced serious sleep deprivation (my second son made up for that). But, when he was about four months old, I started experiencing pain in my hip and lower back.
After a lot of back and forth with physical therapy and my doctor, I was diagnosed with Ankylosing Spondylitis just after his first birthday party. When I look back on those smiling happy faces the pictures from his first birthday party, I get a little sad thinking about how scared and upset I was inside, waiting for my final test results to come back confirming which autoimmune disease I had.
I imagine anyone can guess what the negatives are of living with chronic illness. It isn’t fun living with pain, it isn’t easy feeling sick or tired all the time and it is really expensive to be sick. My family spends thousands of dollars on my healthcare. It pains me to think what we could do with that money. Those are just some of the negatives. But, instead of focusing on the downsides, I’m going to choose to look at the positives, or at least the life lessons I’ve gained from having a chronic illness (or three).
Life Lessons I’ve Gained From Living With A Chronic Illness
To be frank, I’m writing this post as much for me as anyone else. I’ve been experiencing “disease activity” that is affecting my mobility and is overall frustrating. I’m not able to move as quickly as I used to and I’m feeling like my chronic illness is a little less invisible.
Since I’m not in the best physical space, I’m trying to focus my mental energy on the positives. A positive outlook isn’t just good for your mental state, it can benefit your overall health. This may or may not actually be true, but it doesn’t hurt to have a positive outlook.
Here are some life lessons I’ve gained from living with a chronic illness for eight years:
- Mind over matter really is a thing. There are days when I’m in a lot of pain and it is hard to get moving. I’d much rather spend the day in bed that get up at 7 a.m. However, I have two kids and I refuse to let my illness stop me from living so I force myself to power through the pain. It doesn’t mean I’m not in pain or the pain isn’t really that bad, it just means my mind and heart are stronger than my pain.
- We really are capable of doing more than we think we can do. I have had close friends who know what my chronic illness really does to me say that they don’t know how I do it. The thing is, when you don’t have a choice, you just do it. I wouldn’t have thought I would get out of bed day after day after day in pain and have a smile on my face. I don’t choose to live in pain every day but it is my path, so I deal with it daily. What is the alternative? We are all stronger than we think we are.
- I appreciate the little things. Let’s face it, we’re all guilty of taking things for granted. I find that I take less for granted now, particularly if it is something I did with my body. For example, I struggle with bending down because of my hips and back. This weekend, I sorted laundry, which involved a lot of bending and standing and I was pretty proud of myself. For most people, it’s a silly thing to be proud of, but for me, that was a pretty big accomplishment.
- I don’t beat myself up. My body already takes a beating, so I don’t beat myself up for not having the perfectly fit body or being as physically active as I’d like. I used to be weight obsessed, always trying to lose a few more pounds. I now no longer focus on weight, but on health. Go figure, I’m actually thinner than I’ve been in at least 10 years, but that is just a bonus. I’m content with what my body can accomplish, not how it looks in a bathing suit.
- My children are sensitive and compassionate. I used to try really hard to keep my chronic illness a secret from my kids, but as time (and the disease) progresses, it is harder to keep secret. That being said, my sons are more in tuned to people’s challenges and are considerate to other’s wellbeing. They know that people may look fine on the outside but may not be so fine on the inside so we should treat others with compassion.
- My children are independent. Because of my limitations, my kids are more independent. I can’t carry my three year old, so he climbs into the car and his car seat on his own. They both help out around the house because mom can’t do everything and they let me sleep in on the weekends because they know mom needs her rest. My boys are so much more independent and responsible than some of their same-age friends.
- I focus on making memories. Right now, I’m able to go to amusement parks and ride roller coasters. Right now, I’m able to go on hikes (maybe not long hikes or difficult hikes, but hikes). Right now I’m able to go camping and have water gun fights with my kids. I don’t sit on the sidelines if I am able to do things now because I don’t know what the future holds. No one knows what their future holds, but not everyone is looking at a future with a degenerative disease.
- I am content with what I have and live in the present. I don’t get down about the lack of vacations or lack of luxuries. I am happy that we have love in our home, a roof over our head, food in our bellies and the ability to get medical treatment that lessens the pain of my chronic illness. I am happy with what I have now because again, no one knows what the future holds.
- I appreciate all of my relationships. I am lucky to have a wonderful family and friends. My closest friends know about my illness, but they also knew me before. They know the real me and allow me to be that person even if I don’t always feel like that person. I’m lucky to have so many wonderful nurturing relationships that make living with a chronic illness less difficult.
- I appreciate how fortunate I am. While I live with illness every day, there are people who live with bigger challenges. I appreciate how fortunate I am rather than wallowing in how difficult my life can be.
- I have learned to slow down. Before my autoimmune diagnosis, I worked insane hours, traveled for work and was a Type A perfectionist. While I’m still a bit Type A, I have had to let go of so many things in favor of self-care and my health. My house isn’t as clean as I’d like, I don’t host crazy perfectly themed events and I don’t plan every weekend full of events. I take time to relax and enjoy my family and friends, regardless of what the space around me looks like.
Living with a chronic illness is definitely not all sunshine and flowers. I recently attended a funeral for someone who was bedridden the last few years of his life. While I’m not religious anymore, the priest said something that resonated with me – everyone has a cross to bear and living with chronic illness or pain is a difficult cross to bear. No life is perfect, so I consider my chronic illness my challenge in life since I am so fortunate to have so much love and friendship in my life.