There is more to chronic pain and chronic illness than just how the illness makes you feel physically. There is an enormous mental component to it as well. You are suddenly forced to accept that your life has changed drastically in a negative way and by something you have no control over. That takes a toll.
When my endocrine issue began, I was so focused on how to hack the problem that I don’t think it ever really set in that this could be permanent. Also, it’s an annoyance, but something I am relatively easily able to handle. I was more frustrated by the fact that I couldn’t get help from traditional medicine than anything else.
That is not the case for most people who have a chronic condition. The reality for someone learning they have a chronic illness is that their life changes instantly and completely. Not only are they dealing with a physical condition, but it suddenly becomes about doctor visits, days stuck inside because of pain, family that say they want to help but are busy with their own lives, friends that disappear because they don’t want to make accommodations or just can’t deal with a sick person, health insurance not allowing the treatments you need, and the often insurmountable cost of medical treatment. Life changes, but not in a positive way.
This can be often be worse than dealing the illness itself.
It is easy to say that if you are dealing with a chronic condition, seek therapy to assist with coping. However, that doesn’t help much when you are laying on a sofa alone, watching everyone you know out enjoying themselves on social media. No matter how many coping skills the therapist gives you, you still know you are missing out. You feel so alone and isolated. If you are a parent or loved one trying to help someone through this, it’s very hard to watch this play out. Chances are that no matter what you try to do to help, it will be little more than a short distraction. In this article at themighty.com, the author outlines things that come with chronic illness that you don’t realize – things like sleeplessness, having to ask others to do too much for you, and the need to give up hobbies you love.
When faced with a chronic condition, some will rise up and fight it. Others will retreat and wallow in self-pity. Sometimes the choice to do either isn’t even a choice, it’s just what you have to do. I am continually amazed by the determination and resolve I see from those who face their condition head on and fight it with everything they have (check out @marcusaureliusanderson and @im_taylor_on Instagram; they will inspire you). There are countless people who can barely face a Monday, yet these people soldier on the face of adversities most of us can only imagine.
And while a chronic illness isn’t a death sentence, it is a life sentence that can mean the death of certain things. My daughter was starting to record her first EP when struck with an inflammatory bowel disease (as of the time of writing this we are still waiting on further testing to determine which type). It made singing too painful for to keep going, and for her could mean the loss of her hobby and potential career. Not wanting to accept that, she hid her symptoms at first, afraid that everyone would be upset that she couldn’t go on and out of fear of being too needy. (Of course when she finally told me I felt awful for pushing her through what I thought was just teenage laziness. Parent guilt is fun too.)
If you are dealing with a chronic condition, find kindred spirits. I found mine online and in targeted groups. It can be extremely helpful to find others who are dealing with your condition, and learn how they handle it. It is inspiring and gives hope to find people who lead relatively normal lives. You may end up with new friends that “get” you, when all your friends no longer do. There is immense power and comfort in community.
As we embark on this life changing process for my daughter, I am learning about conditions that I had no idea existed and that people I know are living with them – people who I had no idea were suffering. I cannot imagine having to deal with some of the issues I am learning about, and sadly, I wonder how often I have been less than compassionate because I did not know. I am a very driven, no excuses, get up and do it kind of person, and I fear that I have been intolerant at times with others that aren’t like that, possibly because they can’t be. I can already see a more compassionate being emerging. Hopefully this post will inspire the same in you. Try this – post something on social media to see who is dealing with a chronic condition and watch the responses you get. I bet it will surprise you. It surprised me.
Let me know what happens in the comments or on social media. Together let’s make this a better place for chronic sufferers.