Table 3

Numbers and proportions of comments, and a selection of these verbatim comments from participants according to their disability level and classified by an emergent theme

Disability severity level
No disability (n=118; 23.2%)Mild disability (n=113; 22.2%)Moderate disability (n=183; 36%)Severe disability (n=87; 17.1%)
Theme
Employment






Subtheme—working from home		36 individual comments (30.5% of the cohort)
“I have been able to work from home as a result of COVID. This has made it much easier for me to manage my MS symptoms (specifically fatigue).”		20 individual comments (17.6% of the cohort)
“I clean other people’s houses for a small cash amount weekly. I have had to let 3 of my 4 jobs go as they were elderly or had children (thinking of their health) so it has impacted me quite a bit financially. I am not eligible for any of the government monies though, during this time! Feeling resentful!”
… “I am an essential worker. My managers often pushed me to work longer hours. I was then looked at differently when I said I was high risk and needed to limit my work only to the hours I was contracted.”		16 individual comments (8.7% of the cohort)
“Finding new employment is tough. New/potential employers are already asking to confirm any illness”
“I work in the hospitality sector, our industry is on its knees at the moment and i fear the worst is yet to come. I have been unemployed for over four months and it does not look good for the future. I am worried about things i have no control over”		4 individual comments (4.5% of the cohort)
“I am working from home and feel a bit isolated from work mates.”
“My ex-employer refused to put me on job keeper even though I was eligible. I was a casual employee who was on a long term 12 month contract for the last seven years and went on a month’s holiday then came back sick from the holiday and had to isolate due to the start of COVID-19. As such I was unable to work and my ex-employer terminated my contract. This was emotionally upsetting and totally unexpected”
Multitasking: in particular working from home and child rearing 8 individual comments (6.7% of the cohort)
“Was a stressful time due to home schooling and running my business. Very hard time but we got through it with financial issues”
“Requirement to remote teach children while working has also been a challenge of COVID”
“During lockdown, closure of childcare and homeschooling had a significant impact on well-being, anxiety and stress”
“Struggle concentrating on work, mainly due to having to juggle work with 8 yo & 5 yo children at home with us every day for last 6 months!”		2 individual comments (0.02% of the cohort)
“While my income has not changed my work role/time has been impacted by trying to support my two children who have been schooling from home”
“Remote learning for my kids causes difficulties focusing on work and causes frustration”		1 individual comment (0.5% of the cohort)
“Being at home as a single mother of 4 school aged children has affected my mental health severely. Having no family support makes things very difficult and losing my main income due to COVID has been devastating. I don’t know how much longer I can cope with this situation”		No comments
Financial: negative and positive Negative
6 individual comments (5% of the cohort)
“Our income has obviously decreased. All these things plus the need to physically distance from everyone is taking its toll on my physical and emotional well-being”
“I have taken a 10% decrease in salary.
Positive
No comments		 Negative
6 individual comments (5% of the cohort)
“I work as a travel agent and my income has been halved”
Positive
5 individual comments (4% of the cohort)
“I was able to access $10,000 Superannuation which has greatly eased financial pressure and improved life - paid debts, paid rent in advance, new bed, outdoor setting, linen, etc”
“I benefited greatly from the COVID financial bonus, paid by Centrelink”		 Negative
12 individual comments (6.5% of the cohort)
“I lost my job because of COVID. My work were trying to force me to go into the office and when I gave a doctors certificate to say that couldn't, they said that the funding for my position had been lost anyway. They could only offer me one day a week but it had to be in the office. I was unable to do that because I am on heavy immunosuppressants (Ocrevus) so they said I should just work till my contract ended, which was on June 30”
Positive
1 individual comment
“The COVID-19 pandemic has had no real impact on my daily living, Previous income I received was the NEWSTART allowance which left me with no money to socialize. … The extra income from the COVID-19 supplement payment has reduced some financial stress”		 Negative
4 individual comments (4.6% of the cohort)
“My ex-employer refused to put me on job keeper even though I was eligible. I was a casual employee who was on a long term 12 month contract for the last seven years and went on a months holiday then came back sick from the holiday and had to isolate due to the start of COVID-19. As such I was unable too work and my ex-employer terminated my contract. This was emotionally upsetting and totally unexpected”
“Not just income influenced by COVID but finances are affected negatively with increase in power usage and inability to shop selectively at cheaper shops”
Positive
1 individual comment
“I do freelance editing from home and the available work has increased, if anything”
Emotions
Subtheme— fear/worry of infections and/or immunosuppression
Subtheme: same as everyone else for moderate and severe disability		Emotions 39 individual comments (33% of the cohort)
”I have noticed feeling more anxious than I normally would and concentration levels not as high”
“COVID has meant I cannot attend external exercise classes which normally assist in my mental and physical wellbeing, as well as taking away my social interaction with friends”
“Being isolated from family, and worrying about their circumstances and how they are coping continues to impact my thinking and wellbeing”
“I live by myself and this virus hasn't caused too much on my emotional side of things as I try and think positive all of the time and my family ring me every day to make sure I am ok”
Fear/worry
“Obviously worries me as I am on drugs that hinder my immunity”
Same as everyone else
“COVID-19 has had a significant impact on people’s lives both emotionally and financially but I have been battling MS for 16 years so these current challenges I have been facing for 16 years. I have remained positive in spite of the challenges”		Emotions 31 individual comments (27.4% of the cohort)
“Victoria, Stage 3 again! Very hard not being able to see friends, extended family/no social connections/community involvement. Limits on types of physical activities permitted leads to negative impact on fitness, muscle strength etc. Can't run due to physical limitations, walking is the only option. No gym, no pool etc. Feelings of sadness for people who have lost their jobs/loved ones”
“It has been hard emotionally as we are unable to see family members or do much at all”
“My physical health has declined as my gym has closed and I don't exercise half as much as I should. I normally exercise before work to get me going. Now I struggle to go for a walk. This also effects me emotionally. I feel down most of the time and a lot less motivated to do anything”
Fear/worry
“Having to work in healthcare is a bit anxiety provoking. My neuro wants me to go on Aubagio but I am scared it will decrease my immunity. My symptoms appear to be coming a bit more frequently”
“I stopped my treatment (copaxone) for 2 months at the start of the pandemic, until I learned that Covid was highly contagious anyway. I was concerned about affecting (decreasing) my immune system”
Same as everyone else
“Covid has allowed me to feel ‘normal’ when, for example grocery shopping & you're always asked ‘what are you doing for the rest of the day’ or ‘how’s your day’s been’. Now my answer will be the same as most others”		Emotions 17 individual comment (9.3% of the cohort)
“Increased worry that I could get COVID and that I would be more affected than a healthy person. Also worried about my UK parents”
“Social isolation has had the biggest impact on me. Not being able to get out and socialise with friends over lunch or a cup of coffee has made me more depressed. Being at home with a spouse 24/7 with nothing new to talk about was frustrating and annoying. While I still see my child on a weekly basis I miss the interaction I had previously”
“All of my stress and anxiety from the pandemic has stemmed from worry over not being able to get my medications, the issue of the factories closing down or supply stopping, the effect of me going off my medications worry me greatly, I have been very well over the last 5 yrs or so and I think it’s due to the therapy I am on”
Fear/worry
“The pandemic has forced me to make a decision of ceasing my immunosuppressant as my treatment for MS. I have ceased Gilenya this last week. I would rather die WITH MS than FROM COVID. I am extremely terrified of contracting the virus”
“Fear of other people not doing the right thing that may cause me to become infected, especially in shops and other places where other people do not socially distance as required”		Emotions 16 individual comments (18.3% of the cohort)
“Extremely worried about family and friends in Victoria. Feeling helpless that I can't do anything to help them”
“I feel worried and anxious more of the time. I’m finding it very hard to balance my health problems as well as my family commitments”
Fear/worry
“Because I am immune compromised, I have not felt safe to go near shops or anywhere”
Same as everyone else
“I believe my life has not changed too much due to COVID-19. I very rarely would leave my home before COVID-19 and now with COVID-19 the same applies. Mentally I am very concerned about the impact COVID-19 is having on the world”
“Finally, people who are physically able can understand what the experience is like to live with a disability that restricts movement out of the house!”
Social isolation and social connection
Subtheme: missing family and friends and feelings of sadness		22 individual comments (18.6% of the cohort)
“Limited social interaction and activities outside the home has made me feel socially isolated.
Sadness re inability to visit children in same state and overseas”
“Most of the sadness I noticed I mentioned in this survey is due to COVID- 19 and its effect on my ability to attend social activities and visit family members”
“Not going to the gym has impacted on many aspects of daily life such as energy, strength, and social connection. Working out at home isn't the same as I don't push as hard and I miss the social aspect of meeting friends and chatting at the gym. I typically go 5 times per week so I really miss it when I'm not going”		16 individual comments (14.2% of the cohort)
“Victoria, Stage 3 [lockdown] again! Very hard not being able to see friends, extended family/no social connections/community involvement”
“COVID-19 has had a negative impact on my wellbeing due to self isolating as much as possible, not being able to attend my regular gym classes and the lack of social interaction with family and friends”
“I also feel that socially my friendship group is fading away as I have not had regular contact with them”		37 individual comments (20.2% of the cohort)
“Social isolation has had the biggest impact on me. Not being able to get out and socialise with friends over lunch or a cup of coffee has made me more depressed. Being at home with a spouse 24/7 with nothing new to talk about was frustrating and annoying. While I still see my child on a weekly basis I miss the interaction I had previously”		23 individual comments (26.4% of the cohort)
“I am 24/7 wheelchair/scooter reliant and COVID-19 did affect my interaction with several clubs I am involved in … missed the interaction with friends due to restrictions”
“Due to Covid lockdowns(removed*)as they live outside the border bubble that I am in. I am therefore on my own for the duration of the lockdown”

  • Notes: minor grammatical errors were adjusted for consistency.

  • *Denotes text removed to avoid identifying the participant.