Today, I stumbled upon a video from a mom who has a son who is on the autism spectrum, and has been for many years. She was talking about an email she had recently received from a mom who was in the thick of a new diagnosis. Her child was recently diagnosed and the mom was struggling, as most people do when they receive the diagnosis of a chronic condition. She asked the seasoned mom if it gets better. She wanted to know if life gets easier at some point. As I watched this woman explain her answer it made me think about how I would answer this question if I was asked. What would I say to someone who was newly diagnosed as someone who has lived with a chronic illness for seven years? Does life get easier or does it just become something you adapt to?
As I thought about the question I looked back over the last seven years at my life. I thought about when I was first diagnosed and how overwhelming it was and how alone I felt. The diagnosis of a chronic illness is never easy because in most cases that diagnosis will impact almost every aspect of your life from here to eternity. That being said, many people facing a new diagnosis feel a sense of relief with the diagnosis. It validates the fact that there is actually something wrong and we weren’t crazy. However, that first day, the first month and the first year is hard.
It is hard to get used to living with a chronic illness. I can honestly say that for me it’s never gotten easier, It has, however, become more manageable over time. You may be asking, “What’s the difference?”. To me, easier means that you get to a point where there isn’t a constant struggle. It means that eventually you get to place where your illness doesn’t impact your life on a day to day basis. Sadly for myself and many others easier is not generally a term we would use. Most of us would say life with a chronic illness becomes manageable. I know for some easier and manageable mean the same. For me manageable means that I have learned to live with my issues and how to manage the day-to-day.
After living with my chronic conditions for several years (honestly more like 20 years, but I’ve only been diagnosed for seven) I have learned how to live day-to-day with my conditions. I’ve learn what things I can and cannot do. I’ve learned that having a day out with friends shopping or even just going to dinner and a movie will more than likely put me in bed the following days. I’ve learned that I can’t do some things that most people my age can do. I’ve learned that if I miss my monthly medication, the following days and weeks will be difficult. I’ve learned that when my body starts to hurt and become fatigued, this is a sign that I need to rest. I know these things to be true, even if that means missing out and having to cancel plans.
I’ve learned that a lot of people who don’t have health issues won’t understand. They won’t understand why, during cold and flu season, I don’t often leave my house. The don’t understand why I have to cancel plans. And sadly many medical professionals won’t understand me and my body. Since they can’t see my illness they don’t understand why things happen, or why I have the pain I do. While it’s frustrating it just is what it is. On the opposite, and more positive, side I’ve learned how to stand up and advocate for myself. Because I’ve learned how to advocate for myself I have made my life with chronic illness more manageable.
You may be thinking man that all seems awful. You are not totally wrong. In the long run, however, it’s not that awful. In the beginning it was pretty awful, but because of those hard lessons I’ve learned how to manage my conditions. That doesn’t mean that I don’t have issues on the regular or that I don’t come across people who don’t get it. That does still happen, and probably always will. What it does mean is that as I’ve learned the hard lessons of living with a chronic condition I’ve also learned how to manage my health. I’ve learned to listen much closer to my body and the cues it gives. I’ve learned the importance of regular doctors visits and taking my medication on time. I’ve also learned who my true friends are. While those things don’t necessarily make my life easier they do make it more manageable. I would go out on a limb to say that living with a chronic conditions will never be easy, but it is something that you can live with.
Long story short (okay, maybe not that short) my answer would be this. Living with a Chronic Illness is just plain hard at times but eventually you, just like me, will get to point where you can manage your condition. Most will get to a point of status quo and you will have figured out how to manage your health. Sure, for some it does get easier as they go into remission, or as they get to a point where their treatments are working and their illness is calm. For many that point may never come. My advice would be to not seek to find any easier life. Instead, seek a point where your illness is manageable. Living with a chronic illness is a journey that will have many peaks and valleys, but in the end we all just hope for a plateau.
With love,
Amber
