I shared an infographic on my Facebook page yesterday to describe how I feel when people check in on me when I’m struggling or in burnout.
My post got a variety of responses, with some people relating to my feelings, others pointing out how some don’t get checked on at all and feel worse for it.
What I’m about to share may help explain my feelings more.
Autistic Burnout
The last year I’ve struggled with varying degrees of burnout due in part to added stress from my husband having a breakdown starting February of ‘21. I did often turn to others close to us for help and support, but along with that help I learned that I also had to do emotional labor for:
…explaining what was going on with my husband …explaining how I was parenting my kids …. explaining my children’s stress responses …defending why my housework was falling behind …explaining how I was educating my kids …dealing with others’ unpredictable stresses and behaviors from their own lives …gossiping about all the above …second guessing my diagnosis.
Over and above ALL this: Second guessing every decision I made or could make with the limited resources I had.
After 5 months of slogging through I decided I needed to temporarily shut out anyone in my life that couldn’t let me have space to navigate, even if they occasionally offered respite.
In a two month period I found out it was less draining for me to rough out the stresses on our own, but I did eventually let some people in again. I also had the energy to look into finding another caregiver for helping with my physically disabled dad in the hopes this would lessen my overall load and aid my recovery.
My experience with Anna (not her real name) is my cherry on top for why it is hard to risk asking for help, especially with “invisible” disabilities.
Anna was an older lady who had years of caregiving experience. She seemed laid back, had gone through her own trauma and recovery with PTSD, shared how she had to recently help her daughter get her household in order. She was excited to do all the things I struggled most with for my dad.
Match made in heaven!
Anna started working mornings which are the time of day I most struggle with (I have delayed sleep and sleep inertia), I usually let the boys play their tablets and eat their snacks until I’m awake enough to interact more.
Subtle shifts in Anna’s behavior started taking place. She made changes in my dad’s care without communicating with me. I noticed she would agree to help with the boys so I could run errands, but then not do anything to intervene if they got into trouble. Once she left the boys alone with my dad after her shift was over even though I was running behind by only a few minutes (out of my control) and texting her the entire time (she never responded).
Since none of her help for me was part of her job description, but only a favor she had once offered, I slowly retreated from assuming she was dependable. With this shift was also her complete lack of communication OR communication that contradicted her behavior and my anxiety crept up higher and higher. I found myself avoiding her as much as possible. I told myself was here for my dad primarily and as long as he was happy I could try to stay out of the way.
Two weeks ago though during one of Anna’s shifts my brother came by to help watch the boys while I ran an errand. I found out later that while there she privately shared with him how she considered reporting me to CPS, how disobedient the boys were (they’re PDA and were anxious by her authoritarian tone), criticized that we kept “weapons” in the house (we do have all kinds of weapons, some of which the kids are trained to use, some of which we keep out of reach if they can’t use them responsibly) and my sore spot was once again ripped open.
I felt exposed and betrayed, violated in my own home. She was a licensed caregiver trained by the state! I thought I did my due diligence vetting her, yet here I was being condemned by someone who didn’t bother to get to know me or my disability.
I came to my dad in tears to try to figure out how to resolve the situation, and on his own initiative he spoke to Anna during her next shift. She got defensive and belligerent and turned in her two week’s notice.
I sent this to her after she left:
A week later she replied:
I wrote and erased four messages before ending with:
The cost is too high…
These kinds of character judgments put a big detour in my healing and that’s why most of the time aren’t worth the risk for me.
As my experiences this year have shown me, invisible disabilities such as autism/PDA/depression are too vulnerable to misunderstanding, criticism, threats to having our children taken away, second guessing our needs for supports, and a myriad of other subtle battles that only succeed in progressively weighing us down. And while the reason I spend so much time as an advocate is to break these stigmas, in my own circle the burden of educating when I’m at my weakest is often too costly with results that are too uncertain.
Give me that blanket to hide under instead.