Before I start this post, let me mention a few things – there’s a lot of talk of dying early, suicide, abuse, etc, in this post. I am fine – simply describing much of how growing up with chronic pain conditions can be and, indeed, was for me.
One of the things that I’ve struggled with, starting as a child all the way up to today, is the combination of chronic pain and death. Indeed, it’s one of the big issues in the chronic illness world – we often fail to address how mental health can play with chronic illness and pain.
About a year ago, I came across the Tumblr post below:
It really hit home for me.
When I was young and we didn’t know what was going on with me, I made my peace. I was sure that I was going to die soon and I was somehow less scared of it than I am now.
I think I was also more at peace with the idea that I was in no way in control of my destiny. I certainly wasn’t a godly child but understood more about how my physical body is more in control than my brain. Obviously, I would have been sad about passing away so young. I would’ve missed all the time I’ve gotten to spend with my sister, the people I’ve come to know, and all the animals I’ve loved and taken care of.
Since I was so prepared to die early, I didn’t really plan for later in life. Even after the SJIA diagnosis, – I knew that this was a scary disease from what I had read as a seven-year-old with a dictionary beside me. Hell, I figured that if my SJIA didn’t get me that my abusive mother somehow would. She certainly was good at pushing buttons to help people make decisions that weren’t the best for their health. But that’s a story for a different time.
I knew that other people didn’t deal with exactly what I did. Still, I felt as though I was handling this very poorly compared to how others might. It’s a very common thing for kids with chronic pain to think. A few years ago, I read a book that discussed fibromyalgia in children and nearly every kid expressed being ‘bad’ at handling pain they thought everyone dealt with.
It’s one of those initial ways we experience ableism – we think we do poorly at handling issues.
In reality, just like with people of any age, children are just trying to make sense of what’s going on in their bodies and their lives. We can’t control what’s happening to us in a lot of ways, both because of our ages and our illnesses. Many adults don’t take what we say seriously, either, which can further issues like depression – especially if we’re isolated and abused in our youth as I was.
Now I’m nearing 30 and I have no idea what I’m doing. Sure, some say that’s what being an adult is like, but not in the way I feel it. I have few plans because I just never thought I’d get to be this old. Because of T’s struggles with depression, he’s in the same boat. It’s not easy for either of us – and can cause issues within our relationship.
See, the way I grew up affects everything in my life – how I handle my health fun, how I treat others, relationships, etc.
If you have a child who deals with chronic illness, it’s imperative that they begin to see a therapist to work out their feelings. They need validation outside of the family as well as a safe space to vent. They also are going to need a lot more help than any parents, no matter how awesome, can give them. A therapist can be a wonderful person for further mental health referrals.
If you live with chronic illness, whether diagnosed in your childhood or later in life, please see a therapist or other mental health professional. It can mean the difference between life and death.
I tried hard to do myself in with two dozen years of blissful neglect. It is good we do not always get what we want. In my case it was downright terrific I did not get it.
I'm so grateful that you're still here, my friend <3