A few months ago, I posted this statement on Facebook:
"I don't believe it can be overstated how stressful and wearying it is being the parent of someone with significant developmental and medical needs. There is also unspeakable joy. But make no mistake that this life is OFTEN more than overwhelming. I speak for my own family and many others when I ask you to pray hard and regularly for anyone you know living this life. We need your persevering friendship and sometimes help. We wish we didn't need help, and very often we don't even know what to ask for. But we can't do this alone. Practical, emotional and spiritual encouragement is a gust of wind in our sails."
This got a reaction. Most people who responded were caregivers themselves. They resonated deeply with the sentiments I expressed. The rest of those who responded were encouraging friends whose comments usually indicated that they were praying for me. I was grateful for the prayers but even more moved by the hunger among caregivers to feel NOTICED and HEARD.
Since so many caregivers practically begged me to get this word about their (our) chronic stress out more broadly (on their behalf), I posted again the next day with a very personal and rather lengthy explanation about my own chronic stress and why I talk about it the way I do. I wasn't expecting to post it yet again on my blog but subsequent conversations suggest it deserves one more share. So here goes...
WHY DO I SHARE WHAT I DO, WHEN I DO (AND WHEN I DON’T, WHY I DON’T)?
There are a variety of reactions I encounter whenever I talk about how chronic stress is affecting my family and others in intense or complicated, often long-term circumstances.
SHOCK
WORRY
APATHY
DEFENSIVENESS
RESONANCE/APPRECIATION
Obviously, not every reaction is helpful to a family like ours. But trust me, I understand most people are well-meaning and I’m very hesitant to criticize any reaction — I mostly appreciate ANY reaction (except apathy).
Larry and I don’t expect perfection in understanding but we do hope people at least care and try. And we hope people won’t over-simplify what we are experiencing. That feels like invalidation of something that is very big and very real for us.
Some people want to better understand this so I’m going to try and explain more about it today and I’m going to be pretty transparent. I know that I’ll be articulating perspectives that are not just my own because I’ve had emotional discussions with others about this very issue, one as recently as this morning when a friend called me from another state about the post I shared yesterday. Yup. This hit some nerves.
When we don’t talk about our challenges very often, it is not uncommon for people to think that all is well. Some others who have some idea that life is ALWAYS hard over here at the Jamiesons think we are just trying to keep a “stiff upper lip” or are wanting to be self-sufficient in our challenges. Some people believe we are trying to be “missional” in an effort to “look” put together with the power of God. Seriously, we’re not trying to hide anything or even prove to anybody that “God’s got this.”
Don’t get me wrong, I certainly hope my life points people to Jesus and shows that God is fully able, accessible and worthy to be praised. Because He most certainly is. I don’t know how anybody lives through a crisis like this without a relationship with Jesus Christ. But that’s not what underlies my philosophy (or for lack of better word, strategy) for deciding when and how to share the inner realities of my situation. Of course we hope people will somehow see Jesus in us — whether through how He meets us in our challenges or for any other reason! Don’t we all want to see evidence that the living God is real?
But the way I express my stress publically is way more selfish than that.
Larry and I are, first and foremost, trying to live in a way that helps us thrive as individuals, a couple and a family. In the process. We just want to live within relationships that are REAL. I gave up trying to tough things out a long time ago. I do just exactly what I have to do every day to survive and thrive. So, trying to look “good” or more “Christian” is far from the reality for me and Larry. We always want to be authentic with people and we highly value people who are willing to be real with us. In truth, there are a whole host of reasons why I talk about our specific challenges or overwhelm rather infrequently compared to how often we are actually struggling.
For today, it’s important to me that you know WHY. God seems to have prompted me to just lay it out here for whoever cares. So…in no particular order…these are just a few of the reasons why I personally don’t talk often or widely about the specifics of my personal stress…
- I’m not always in touch with the reality of how extremely stressed out I am.
- I function on autopilot a lot.
- I don’t want people feeling sorry for me.
- I have all the same stresses everybody else does and would really like those to be recognized as part of who I am too.
- A whole lot of people would rather just believe that “it’s all good” over here.
- Some people just want to cheer me up.
- Some people tell me, “you deserve to feel sorry for yourself.” This isn’t helpful for me. I appreciate the attempt at empathy but I don’t believe this is right thinking and it is rarely helpful for me to go to that place.
- I spend a lot of my daily energy trying to pace my energies and emotions. That means I have to spend proportionately high amounts of time with Jesus and in prayer. Since my physical body is increasingly deteriorating due to Carly’s 24/7 cares, my age, long years without adequate sleep, etc., I have to give some priority to taking care of me as best I can (which is never really enough). I need more naps than the average person because I spend a lot of time awake at night. I need to serve others. It’s a great outlet for me — gives me a sense of purpose and keeps me from feeling consumed with my own challenges. Needless to say, all of that doesn’t leave a lot of time left over for complaining and explaining.
- Sometimes I’m just plain tired of explaining.
- I don’t like people dismissing me as a “drama queen.”
- I get tired of feeling like I have to be one of the world’s “teachers.”
- I weary of the disappointment of trying to build understanding and having my hopes and needs for resonance dashed when people don’t “get it.”
- I don’t want to get my hopes up that someone will care (reach out) only to be disappointed.
- When my situation is most overwhelming, I feel unable to explain my situation or emotions. My mind and heart feel too complicated to explain. So, if I feel able say anything at all, I just try to articulate even one thing I know people can pray about or help with. But that can give the impression that just one thing is weighing on me. (Yet, rest assured, whatever I am saying out loud is probably just the tip of the iceberg with lots more behind it.)
- It helps keep me out of depression and those woe-is-me places if I focus on what is going well and what I’m grateful for.
- Focusing on Carly’s strengths gives her the best shot of reaching her potential.
- Focusing on Carly’s strengths (instead of why she’s making things hard for me) feels more respectful to her.
- Any time I talk about how hard it is caring for Carly, I risk undermining our ability to ever find or hire respite helpers (because people think they won’t be able to handle it).
- I don’t want to worry my family.
- I don’t want people to quit sharing their own concerns with me because they feel badly that their own issues may seem insignificant next to mine.
- I often feel misunderstood and since I’ve been misunderstood a lot in my life, I avoid that pain.
- I don’t want to feel analyzed.
- I get tired of talking about the same thing. Being “that person.” Sounding like a broken record.
When you boil it all down, this is probably the biggest reason why you don’t regularly hear about or see the degree of my stress:
I WANT TO LOOK AND FEEL AS NORMAL AS POSSIBLE.
I don’t want to look normal for your benefit. I want it for me.
So even though taking a shower, fixing my hair and putting on a cute, comfy outfit to go out in public takes the alignment of stars at my house and risks masking a reality about how much I need your prayers, help and friendship — I’m going to risk it. Because for a couple of hours, I’m happy to be clean and out in a “normal” world feeling like a “normal” human being with a “normal” life. Any illusion is for me. Not for you.
And here’s one more thought for you to chew on. If I wrote about this regularly, many of you would have stopped reading my posts a long time ago. You’d be too overwhelmed, irritated, or numb. My perpetual drip of whining would wear you down and lose its oomph. (For some people, it already has. They not even curious and are no longer reading this right now.)
So, consider this “rant” my way of trying to get your attention and urge you to remember there are friends around you struggling mightily with chronic hard stuff — whether or not they look like it or sound like it. Please don’t check out on them, whether they are good at how they handle their communication or not. (Doing this well is hard and even harder when you’re stressed out and/or sleep deprived.)
Thank you for listening.
I’ll write again soon.
