Wellbeing Factor Overview

Introduction

I have been collecting wellbeing data over the last four of my surveys (2017-2020) and in each I have analysed the factors which are identified with the highest and lowest wellbeing. This post looks at the aggregate of all data to identify which factors have the greatest effects on wellbeing. I have highlighted the top seven issues.

At the bottom of this post are two tables, one showing all the factors which have the greatest wellbeing and one showing all the factors with the lowest wellbeing. The tables are restricted to factors which affected at least 15% of the respondents of the survey in question, and the tables report the difference from the average wellbeing score of each survey. Each factor shows the year of the survey where this was investigated more fully.

Readers should note that whilst the text below may read like medical advice, it is not! I am not a trained medical professional, and I have simply collated relevant information for each topic and posted it below, mostly from the UK NHS websites. If you are seeking to make changes in any of the areas listed below you may wish to seek the advice of your doctor beforehand.

1) Depression

The factor at the top of each table is depression, i.e. it is the single factor which causes the lowest wellbeing, and is the single factor whose absence gives rise to the gratest wellbeing. This suggests that seeking help to treat any depression has the potential to make the greatest positive change in wellbeing. If you wish to self-assess your level of depression you could use either the PHQ2 or PHQ9 tools, which are available free-of-charge on-line. You may also choose to talk to your doctor, a helpline (e.g. Samaritans in the UK: https://www.samaritans.org/) or someone you trust. You may also want to read advice here: https://www.nhs.uk/mental-health/feelings-symptoms-behaviours/feelings-and-symptoms/low-mood-sadness-depression/. Depression was assessed in both my 2017 and 2018 surveys.

PHQ2: https://qxmd.com/calculate/calculator_458/patient-health-questionnaire-2-phq-2

PHQ9: https://www.mdcalc.com/phq-9-patient-health-questionnaire-9

2) Sleep Quality

The second factor associated with low wellbeing is where sadness, anxiousness or worry affect sleep always or usually. Similarly being affected by six or more sleep factors gave rise to lower wellbeing, and good sleep (either being affected by none or one sleep factor or not having difficulties falling asleep) is associated with better wellbeing. There are many factors which can affect sleep quality, including mood, routine, noise, temperature, comfort/discomfort, light and others (https://www.nhs.uk/live-well/sleep-and-tiredness/). You have more control over some of these factors more than others. You may need to talk to your doctor to identify how your sleep is being affected to identify options to improve it. Sleep was examined in my 2018 survey.

3) Loneliness and Isolation

Those feeling lonely and/or isolated were also shown to have a lower wellbeing than those who do not feel lonely or isolated.  If you are feeling lonely or isolated you could try talking about your feelings with a friend or someone you can trust, or you could take part in an activity you enjoy, seeking small positive changes (https://www.nhs.uk/mental-health/feelings-symptoms-behaviours/feelings-and-symptoms/feeling-lonely/). If your feelings are related to your HSP diagnosis, then you could consider joining a support group where you will often find others with HSP who understand your position and you can listen to, talk about or share your collective experiences. Loneliness and isolation were examined in my 2019 survey.

4) Stress

Those who feel stressed have a lower wellbeing than those who do not. Stress may lead to different mental symptoms, physical symptoms or changes in behaviours (https://www.nhs.uk/mental-health/feelings-symptoms-behaviours/feelings-and-symptoms/stress/). Approaches for dealing with stress can be similar to those already described for depression, loneliness and isolation, but you may alternatively want to take part in stress-busting activities such as exercise (within the limits of your HSP of course), planning and managing your time, mindfulness or relaxation. Similarly, taking small steps at a time. Stress was a symptom in my 2018 survey.

5) Embarrassment

My 2020 survey identified that people who had delayed or avoided seeking medical advice because they felt embarrassed about their HSP had a lower wellbeing. The survey did not explore reasons for the embarrassment, however it is quite common for people with long-term illnesses to find it difficult to talk to people about their conditions. If conversations are difficult, this page from the NHS in Scotland gives some useful information: https://www.nhsinform.scot/care-support-and-rights/palliative-care/talking-to-people-about-your-condition/talking-about-your-condition. Don’t be put off by the palliative care heading!

6) Pain

Those without pain from their HSP have a higher wellbeing than those with pain. If you are affected by pain from your HSP you can take some action to reduce this: https://www.nhs.uk/live-well/healthy-body/ways-to-manage-chronic-pain/. If you pain is more severe then I suggest that a conversation with your doctor would be in order.

7) Understanding HSP

Those who considered that they knew HSP very well had a higher wellbeing than those who knew HSP somewhat. Whilst HSP is a rare disease, there are plenty of information sources which you can use to increase your understanding of HSP. My 2016 survey examined information sources for HSP. also asked respondents where they got their information on HSP.

This survey showed that: most people get their information about HSP from social media, doctors and neurologists. Medical websites, support groups, physiotherapists and friends/family with HSP form another important group of information sources. The sources which people regarded as most trustworthy were neurologists, support groups and physiotherapists. Social Media and friends/family with HSP form another important group. Of sources used by more than half of respondents, the ones with people being most unsure were doctors and other medical professionals.

Overall, people need to be selective in what they believe on social media – and check out the author. Support groups can be a good source of information. People may need to work on relationships with doctors so they understand people’s situations better. Talking about your situation with friends/family with HSP may be useful for you and them.

I will finish this post with a shameless plug that there is a fair bit of HSP information on the other pages of this blog (https://hspjourney.blogspot.com/), so you are welcome to read around. You should note that there is a search tool allowing you to find posts with particular keywords. There is also an index page (https://hspjourney.blogspot.com/p/index.html) where all but the most recent pages are grouped together, and a page showing which posts are more popular (https://hspjourney.blogspot.com/p/blog-statis.html). Enjoy!

Positive Wellbeing Factors

Factor	Percent	Points Above Average	Respondents
Not suffering from depression (symptoms, 2018)	26.0%	6.8	79 / 304
Not suffering from stress (symptoms, 2018)	16.1%	6.6	49 / 304
No Pain from HSP (pain, 2017)	18.5%	5.8	41 / 222
Understanding HSP very well (2020)	18.3%	5.5	58 / 317
Not suffering from poor-coordination (symptoms, 2018)	20.4%	4.6	62 / 304
Good sleep (affected by up to 1 sleep factor, 2018)	32.9%	4.5	100 / 304
Already take part in digital exercise classes (2020)	17.7%	4.5	56 / 317
Travel to town daily (life-space, 2019)	18.8%	4.2	69 / 367
Not feeling lonely (life with HSP, 2019)	66.8%	3.9	245 / 367
Not feeling isolated (life with HSP, 2019)	69.5%	3.5	255 / 367
Not having difficulty falling/staying asleep (sleep, 2018)	49.3%	3.5	150 / 304
No depression (PHQ2 score 0-2, 2017)	22.1%	3.5	49 / 222
Not affected by learning/memory issues (symptoms, 2018)	45.7%	3.3	139 / 304
Not feeling vulnerable (life with HSP, 2019)	45.2%	3.2	166 / 367
See physiotherapist more than monthly (2020)	50.5%	3.2	160 / 317
Getting adequate treatment after having been taken seriously (2020)	43.8%	3.1	139 / 317

 

Negative Wellbeing Factors

Factor	Percent	Points Below Average	Respondents
Depression (PHQ2 score 3-6, 2017)	59.0%	9.0	131 / 222
Being sad/anxious interfering with sleep always/usually (sleep, 2018)	24.3%	8.6	74 / 304
Feeling isolated (life with HSP, 2019)	29.2%	8.4	107 / 367
Feeling lonely (life with HSP, 2019)	31.6%	7.9	116 / 367
Delaying or avoiding advice due to embarrassment about HSP (2020)	15.1%	7.3	48 / 317
Suffering from stress all or most of the time (symptoms, 2018)	22.4%	6.9	68 / 304
Worries affecting sleep always/usually (sleep, 2018)	20.7%	6.1	63 / 304
Poor sleep (Having six or more sleep factors always/usually, sleep 2018)	23.0%	6.0	70 / 304
Medical professionals not understanding your HSP at all (2020)	20.8%	5.8	66 / 317
Not content with employment/occupation situation (employment, 2017)	31.1%	5.5	69 / 222
Understanding HSP somewhat (2020)	19.9%	3.2	63 / 317
Seeing a physiotherapist a few times (2020)	23.3%	3.1	74 / 317