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🍁 VHLC Defining and rating distress
“Stress describes what people feel when they are under mental, physical, or emotional pressure. Stress is the demands that people perceive, whereas distress (anxiety, depression, worry) is the emotional response to these stressors...” -VHLA Handbook, 2020, bold added
“Distress is an unpleasant experience of a mental, physical, social, or spiritual nature. It can affect the way you think, feel, or act. Distress may make it harder to cope with having cancer [and VHL] its symptoms, or its treatment... (bold added) *
Whether you’re a VHL Patient or family member, etc: bring up anything concerning distress... with your healthcare team (or even family and friends if possible). Aim for a 1 out of 10 rating on your overall level of distress for the last week and then address each “problem area”. What I’m suggesting here is that that this can be a way to start a conversation (it’s not a formal “ test”). It’s also a way to check in on yourself every week or so:

1-10 = No distress?- Extreme distress?
Problem areas list:
Has any of the following been a problem for you in the past week including today?
Practical Problems?

  • Child care
  • Housing Insurance/financial
  • Transportation
  • Work/school
  • Treatment decisions
Family Problems?
  • Dealing with children
  • Dealing with partner
  • Ability to have children
  • Family health issues
Emotional Problems?
  • Depression
  • Fears
  • Nervousness
  • Sadness
  • Loss of interest in usual activities
Spiritual/religious concerns?
  • YES NO
Physical Problems?
  • Appearance Bathing/dressing Breathing
  • Getting around
  • Indigestion
  • Memory/concentration
  • Substance use 

Other Problems not mentioned: ___________

*Source: The National Comprehensive Cancer Network® (NCCN® US), NCCN Distress Thermometer


Please share any feedback or questions with us. Thanks, Henry.
🍁 VHL Canada facilitates peer support for people coping with VHL in Canada
CRA BN: 800804676RR0001
Our mailing address is:
VHL Canada
2938 Dundas Street West
PO Box 70510
Toronto, ON
M6P 4E7

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VHL Canada · 2938 Dundas Street West, PO Box 70510 · Toronto, On M6P 4E7 · Canada

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