Anxiety and MS: What You Can’t See Through The Computer Screen
Being an active patient advocate, community members, and writer online takes a certain amount of moxie. It takes guts to share your experiences in an open forum. But any writer only shows you want they want to reveal.
Not sharing it all
There’s nothing in the imaginary “MS Blogger Code of Ethics” that states you really must TELL ALL. Sure, I’ve talked about soaking my underwear in a museum bathroom faster than I could get my pants down. I’ve written about itchiness so intense that it might make you feel like you’re going crazy. I’ve written about the masks we wear and short fuses.
I’ve not necessarily shared how powerless even an experienced patient advocate — I mean me — may feel when things are beginning to spin out of control.
The past month has been a rollercoaster of events, activities, and emotions. 1) Life was scheduled to the brim from early April to this past weekend with music-related events. 2) My mother-in-law (i.e., MIL) had knee replacement surgery in mid-April after which I basically moved in with her to be her caregiver and safety monitor. 3) Dealing with #2 led to overwhelming feelings of anxiety, frustration, fatigue, and powerlessness.
Needing peace and quiet
In order to function, I require plenty of quiet time to myself. I need mental space to be able to write and read complex research materials. My MIL loves to talk; she also seemed to love having someone around to attend to her needs. This made things difficult. There was one day that I believe I was only able to log about 30 minutes of uninterrupted personal work time on the computer during a 5-hour stretch of time. This was very hard for me and began to aggravate my tendency toward anxiety, which in turn fueled an unexpressed sense of boiling rage each time the phone rang or an innocent voice seeking companionship traveled across the room. I was to the point of tears anytime I let down my guard to acknowledge my frustrations. But on the outside, in the moment, I was perfectly pleasant, cheerful, and helpful as can be.
One afternoon, I shared a brief laundry list of my recent activities and a longtime online friend from the health policy world honored me with statements of how inspiring I am. That was very kind, but I wondered how inspiring people would think I was if they saw me crying when no one was looking. My emotions were beginning to unravel. Last Monday, I had a routine neurology follow-up appointment. My nurse walked in the exam room and asked how I was doing. I responded, “Do you want the superwoman answer? Or the real answer?” She started to say superwoman, but then quickly said that she wanted the truth. So I told her, and I shared that the spasticity was headed back off the charts (aggravated by the furniture at my MIL’s house). The appointment was brief and she renewed my prescriptions, increasing the baclofen dose, and gave me a new script for diazepam for when the painful spasms get to be too much. What she didn’t do was offer any real empathy, ask any follow-up questions about the anxiety I reported, or make any suggestions about how to reduce the symptoms in a productive way.
Feeling unheard and under-appreciated
Fortunately, I’ve been here before and can find my way out; but it left me feeling unheard and under-appreciated. Even strong patient advocates can feel powerless in the physician’s office. But at that moment, I definitely didn’t feel inspirational nor exemplary. It’s hard to share the rough spots when you know that others see you as a strong leader who is capable to doing amazing things. But even leaders feel like they are falling apart sometimes. A week later, I’m feeling better and able to ease back into my normal routine. Now that the crisis has passed, I considered not sharing. However, I know that the next time I begin to feel unraveled, I can look back on this story and know that I was able to bounce back. I was able to be vulnerable and feel okay about it… maybe even a tiny bit inspirational.
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