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This is a contribution from a patient.
To be clear: I am not a doctor or any related professional.
Brave brave v👀d👀 doll, smiling just a little
Brave brave v👀d👀 doll, smiling just a little
Pain starts this writing because chronic or sporadic, physical or neuropathic, pain will raise the level of difficulty on every... damn... thing.
A wheelchair seat lacking enough support under the thighs feels like your calf bones are being compressed vertically, that is physical pain. The cause is external to you and might warn you of danger.
The "MS Hug," as patients have called it, is the unfriendliest of hugs — like a vice that squeezes from all directions. We can call that a neuropathic (nerve damage) pain.
Pain makes me hungry, or angry, it might make my mouth close tight.
💫 Pain Self-check Interruption — 1-to-10 pain scale, where are you now?
1 • 2 • 3 • 4 • 5 • 6 • 7 • 8 • 9 • 10
If 5 is "getting hard to ignore" and 7 is "strong enough to make thinking hard." Pain, especially chronic pain, will diminish focus, comprehension, and speech.
Buffering (Please Wait)
Buffering (Please Wait)
Over time, communication has become more difficult, my interactions have gotten slower, and my social signals in a conversation have become less natural. People I talk to assume I have nothing to contribute or that silence means I approve or agree. If you have had the same experiences, keep reading. (In reality, I wish for a buffering status to appear above my head.)
We all co-evolve together. Me and my caregivers and my spouse and my son. Especially when it comes to language. Humans might be just Chimps in shoes, but dagnabbit, we are gossipy Chimps in shoes!
In case you need it here is a refresher on the feelings and thoughts that come with chronic illness.
Stages of Grief for People With Chronic Pain & Chronic Illness | Florida Chronic Illness Therapist
Stages of Grief for People With Chronic Pain & Chronic Illness | Florida Chronic Illness Therapist
Chronic Illness and Loss of Self | How Communication Works
Chronic Illness and Loss of Self | How Communication Works
From my interactions with people (many with the same medical issue as me, others realizing they have similar communication challenges) here is my list of misunderstandings, miscommunications and missed communications.
I need a longer runway to get organized in my head
I even need a runway before signalling I need a runway
I know I abandon searching for the sentence when my brain is in conflict and I agree to move on
Positive emotions fly away, but negative emotions stack up and linger
My speech doesn't slur, I do not mix up names or words in an obvious way (dementia is not misplacing your keys, it is looking at your keys and wondering what they do)
When you cannot hold a two-way discussion, go back and forth, confirm a fact, or question something you are confused by, achieving a clear understanding becomes difficult. One time, more than a year ago, I could feel tightness around my mouth. I asked my wife, "Am I scowling right now?" She said, "Yes." But I was feeling no such thing. My MS was contorting my facial muscles, “feeling tight.” What did my “expression” communicate? How often has this happened without me knowing?
Were my interactions tainted by signals I did not send? Is it depression or fatigue? Is it anger or a muscle spasm? Maybe whole-hearted agreement or is my mind stuck on 'spin?'
People behind glasses may be less bright than they used to be
People behind glasses may be less bright than they used to be
Still with me? Good. Things are gonna get a little bit more personal. The people behind glasses? I resemble that remark!
Dear Dr. _________________,
NAME HERE
If I use a medical term wrapped up in proper grammar please act as though I just asked you to prescribe
running with scissors.
You’re the doctor, doctor; you delectable, overworked and underappreciated, you.
Signed,
Your Humble Idiot Patient
The apologetic confession above is because I just did it again just two weeks ago (at the time of writing.) At an appointment with my family doctor, I used a medical word and caused confusion and delay. But that is the least of my challenges.
Meanwhile, back on topic...
Meanwhile, back on topic...
Overall this is what happened to me on an emotional level. The slower pace at which I was comprehending what I was being told and my slower reactions put a wall between me and everyone. My frustration only increased. From my wife's perspective, my staying quiet and not interacting, meant she had to make decisions I bowed out of. Her frustration only increased.
I have had brief times of fatigue — like when I need to travel to an appointment which takes preparation and car travel, among other things — leading to a symptom that could seem like depression. Trying to address something complex and compose a reply overwhelmed me. My words would not come out; my face would be stoically frozen still.
Above I stated what I do not share with dementia sufferers. These points did hit home, however:
If the person with dementia is not able to express themselves, they can lose confidence, feel anxious or depressed, or become withdrawn. [...]
Because they are unable to communicate in the way they are used to, you may find that they get frustrated or that their behaviour becomes challenging or difficult to understand.
(Source: Alzheimer's Society (UK), underlining is mine.)
Life with a chronic condition like MS can visit the same problems on sufferrers.
How can I or how do you break through my state? Trust less, verify more. Do not let me get away with "acquiescence by silence." Some people with MS or those showing similar problems need the careful shepherding of communication. A mind stuck on 'spin' will have trouble remembering correctly, too.
Ask for 'space', as today's young people say, ahead of time. It helps get all the communication right.
💫 Some recommendations for nurses on conversing with patients with speech difficulties may be handy here.
Be patient — do not speak for the person / complete the person’s sentences
Give the person your undivided attention and eliminate background noise and distractions
Do not pretend to understand if you do not — tell the person you do not understand, ask them to repeat / spell it / tell it differently / write it down
Repeat what you understand and get confirmation
Shorter questions that require yes / no / brief statements may work best, but avoid insulting the person's intelligence
Based on Communicating with People with Disabilities (National League for Nursing, Washington, DC, USA)
Back to negative emotions and facial expressions. Look at the photo on the right. The smiling lady I have the privilege of calling Mom. The goofy-looking kid is Me! I was making faces for attention but Dad only had eyes for Mom. Somebody stole my shoulders.
Tolstoy wrote, "Each unhappy family is unhappy in its own way." You are on the way to your own uniquely unhappy family when one partner's chronic condition creates unexpected communication barriers. Go to a mirror and try practicing smiling. Assess for yourselves.
Fanny Polkovsky & Alex Polkovsky (link goes to larger version)
Original Colour Slide by Michael Polikovsky, Odessa, Ukraine (USSR) ca. 1974
Thank you for meandering with me through my thinking process. The slower my speech gets the more I want to express ideas in text form. Making this web page (yes, this one) has been a roller coaster of writing and editing, moving or deleting.
💫 Keep these expressions handy
Loss of confidence
Anxiousness or depression
Becoming withdrawn
What is my face signalling now
Trust less, verify more
Less acquiescence by silence
A mind stuck on 'spin' misremembers
I need a longer runway
Running with scissors
Buffering
Ask for & give space
This might be that episode of 'Three’s Company' about a misunderstanding...
This might be that episode of 'Three’s Company' about a misunderstanding...
Image by Madhana Gopal from Pixabay
After eight years on the air and 174 episodes of ‘Three’s Company,’ every story centred around a misunderstanding. (Kids, ask your parents.)
I have created a kit to help remind yourself and others that everyone needs to tune in to a common frequency. Download the compressed file. Extract the file contents. (Parents, ask your kids.)
Print a desk-tent-style reminder for your meetings and appointments. Use the logos however you see fit.
Printable logos with progress circles in black and red.
The "Brainy Specs" logo.
The standard letter-size printable page that folds into a 'desk-tent' — like standing name cards at workplace meetings.
All in .png and scalable .svg formats.
To close: use it or not, print it or don't, but I hope I planted some thoughts about communication while living with a chronic condition. Take heart from the wise words of Socrates and may you know a new thing every day (to re-enforce your sense of how little you know.)
Image made using a public domain image distributed by Wikimedia Commons. Wikipedia entry for I know that I know nothing.
This is a contribution from a patient.
To be clear: I am not a doctor or any related professional.
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