Three months ago T Man had a routine, follow up appointment. At the beginning of our time I answered a series of questions on a tablet. I can't remember the details, but the questions focused on support for our family. Had anyone directed us to community resources? Had anyone ever asked us how we were impacted by our diagnosis? My answers were overwhelmingly negative. The implication was that those things should have happened. It was an affirmation that we had been very alone through our journey with disability. The questions triggered some grief in me.
Five years ago, the week we moved to our new state, T had his first anaphylactic reaction. Since then we have bounced from one mishap to the next. At each new physician, on each new intake form, with each meeting we are asked if we have a support network. I lie. I say, "Yes, we have a few friends in the area and out of town family that is willing to travel in times of emergency." Today I was reminded why I lie.
Most days, life just is what it is. Some days, though, the stress wears thin my soul. I've had a number of overtaxing days lately and have thought of those painful questions. I want to read them again, at my leisure, in the privacy of my home, and process through the loneliness. Today I finally called the doctor's office to see if they could release the questions to me. Unfortunately, when the nurse called me back I cried on the phone. I stared at the ceiling and bit the sides of my tongue, but still I cried. I cried AND I told the truth. I told her those questions, by some magic, left me feeling more alone than I did before I answered them. I said I just wanted a copy of the questions so I could process my grief on my own. She asked me if I needed a social worker to let me know what resources are available. I told her no, what we needed was people. She said she would have a social worker call me.
Then she called back. Fortunately, my experience as a nurse helped me brace for the crap to come. She told me to call my primary, that they could help me. She wanted to make sure I wasn't in crisis, to be sure I wasn't at risk of harming myself or anyone else. She wanted to be able to chart that she had intervened in my pain and prevented disaster. I let her. I told her, using my cheerful voice, that I would call my primary. I went the extra mile to point out why that was such a good idea. I lied. She assured me again the social worker would call later. "Okay, sounds good!" I lied.
When I told M that I briefly lost my mind and told a healthcare provider the truth about our lack of social support he shook his head side to side. As healthcare providers we both know what folly that is. You see, the healthcare team doesn't actually want to know. Because they don't really want to help. They don't know how, and they don't want to learn how to. So, they ask the questions to make themselves feel better. But they don't want to know when you're weary. If you do confess to having more responsibilities than resources they turf you to social work. Social work adds to your responsibilities by giving you a long list of places to call and forms to fill out. No one quietly listens, allowing you to share your pain. No one says, "I'll take care of this for you." No one cares. So we lie.
In addition to the seven appointments that I'm going to navigate with four children next week, I'll have to answer a phone call from a social worker and tell her everything she wants to hear. If not, she'll flag me as unstable, or give me more work to do. She won't listen to my pain. She won't believe me that all I need is a copy of those damn questions. She won't give me the one thing I asked for. She'll give me more questions, more forms, more calls and threaten me with more appointments.
This is why we lie.
copyright (c) Elizabeth, Bug's Beef. All rights reserved.
