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Working with a chronic illness: Carenity members share their experience!

Published Feb 25, 2021 • By Courtney Johnson

Being diagnosed with a chronic illness can change a person’s life. Unlike a temporary illness such as a cold or the flu, chronic illness may never go away and can disrupt a patient’s life in many ways, encroaching on their daily life, routines, and career.

For this article, we wanted to understand how Carenity members balance working life and their health condition. 856 members shared their experiences with us via a survey!

How has chronic illness impacted Carenity members’ ability to work? What kind of accommodations have they had to make to continue working? What advice do they have?

We share it all with you in our article below!

Working with a chronic illness: Carenity members share their experience!

856 Carenity members responded to our survey

We conducted a survey from February 10th to 22nd, 2021 in which 856 Carenity members in the US, the UK and France participated. We asked them questions about their life and working with a chronic health condition.

Respondents were mostly women (77%) with an average age of 54 years old.

They most often had the following chronic conditions:

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In the US, the majority of respondents have depression (22%), type 2 diabetes (15%), multiple sclerosis (13%), sleep apnea (10%), or bipolar disorder (9%).

Many Carenity members with chronic illnesses are still working and were diagnosed during their career

34% percent of our members are currently working despite their chronic condition, with 22% working full time and 11% part time.

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More than half of respondents (67%) were diagnosed at a time when they were working and had to process their diagnosis while also concentrating on their career. 

While many of our members mentioned feeling relieved that they could finally put a name to their symptoms, many others expressed feeling shock, frustration, and even fear for their future at the moment of diagnosis:

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I couldn't believe that I was 'on the scrap heap'. My consultant said that I would never work a full shift again.
- A 64 year old male living with type 2 diabetes, sleep apnea, ankylosing spondylitis and osteoarthritis in the UK

I was a little concerned as to how it would affect my job. I worked in a childcare setting. Within 4 months of my diagnosis l was told l was being let go. That was in 2002 and l have had no further significant employment.” 
- A 62 year old female living with rheumatoid arthritis in the UK

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“I was relieved! I was so excited for answers. But at the same time I was scared with all these questions running through my head: How am I gonna deal with this? Will I ever not be in pain? How will this affect my life? How will this affect my family's life?
- A 21 year old female living with mastocytosis and interstitial cystitis in the US

I was shocked. I had worked like a bull my whole life with no meds, no blood pressure problems, and then I got kicked in the face with diabetes.” 
- A 65 year old male living with type 2 diabetes in the US

I was very upset. I had herniated a disc in my back at the hospital where I worked as a pharmacist and could not function for quite some time.” 
- A 69 year old female living with chronic pain in the US

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I continued to work because I didn’t want the disease to take over my professional life… Unfortunately I pushed myself too hard and I even put myself in danger.
- A 36 year old female living with Crohn’s disease and psoriatic arthritis in France

It was like watching the total collapse of all my personal and professional goals.
- A 39 year old male living with lupus in France

Some chronic patients hesitate on whether or not to inform their coworkers or employer about their chronic condition

Overall, 55% of respondents across all three countries made the choice to inform their employer or coworkers about their diagnosis, for the following reasons:

  • They felt that they should know / For transparency
  • They felt comfortable / Had a strong friendship with coworkers
  • It could have a possible impact on their work or their coworkers
  • They needed time off or accommodations
  • They were obliged to legally
  • They were not ashamed / Didn’t feel the need to hide it

In the US, however, more respondents chose not to disclose their condition at work than those that did (42% vs. 36%, respectively).

For those who decided not to disclose, they mentioned the following reasons:

  • Fear of judgement
  • Fear of losing their job / that it would affect their employability
  • Fear of not being believed
  • Embarrassment or shame
  • For privacy reasons
  • Because of possible bullying or hazing in the workplace


For almost 75% of respondents, their chronic illness has impacted their ability to work

Often the symptoms caused by chronic illness can impact a person’s mental or physical health to the point where it affects their ability to work.

This was the case for almost three quarters of our respondents.

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Members mentioned experiencing physical pain and limitations, difficulty focusing, lack of energy, negative impact on their mental health (especially anxiety and depression), to the point where they had to or were forced to take time off work.

Despite this, only 30% of US respondents have had to make accommodations to be able to continue working. For those who have made accommodations, they have implemented the following actions:

  • Changed or stopped work-related travel
  • Changed roles or even career path
  • Started to work freelance or as a temp to be able to control workload/amount of work taken on
  • Requested special equipment, materials, or software and/or made changes to the workspace
  • Adapted or changed work schedule
  • Switched to part-time
  • Receive help or additional support from coworkers


What advice do members have to share about how to balance chronic illness and a professional career?

We asked members to share any advice or tips they had on how to manage both their chronic illness and an active career. Here’s what they said:

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Accept that you have up and down days and be kind to yourself in allowing enough time to recover from any condition rather than risk recurrence/ongoing issues as a result. Go to bed earlier, get fresh air, keep as active as possible to keep the mood upbeat. Don't dwell on what you can't do, focus on what you can, remember all things must pass and tomorrow is another day.
- A 62 year old female living with lung cancer

Ensure that you have purposeful "downtime". I find yoga, light exercise and meditation very helpful. It's also OK to have a day off from everything sometimes. Be kind to yourself, but do as much as you are able to.
- A 40 year old female living with MS

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Never give up! And remember it's okay to sit down and say "not today," you don't have to force yourself. You're strong! You don't have to let the chronic illness win!
- A 21 year old female living with mastocytosis and interstitial cystitis

Be honest with your employer, most of the time they will work with you.” 
- A 60 year old female living with Crohn’s disease

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A chronic illness shouldn’t be considered a curse. Support from family and friends is very important. Taking time out for small moments of pleasure (social, food, sports, family, etc.) helps to maintain a psychological balance, which should not be neglected in the short and long term.
- A 39 year old man living with lupus

Talk to your doctor, get help from others, take a health supplement, and take care of yourself. The illness is not your fault.
- A 53 year old woman living with bipolar disorder and IBS


Was this article helpful to you? Do you have any advice to share?
Share your thoughts and questions with the community in the comments below!
Take care!


Data taken from a Carenity survey conducted from February 10-22, 2021 on the US, UK, and French Carenity Platforms.

avatar Courtney Johnson

Author: Courtney Johnson, Community manager UK & US

Courtney is Community Manager for Carenity’s UK and US platforms. Her role is to facilitate discussion and answer questions among Carenity’s English-speaking members. She also assists in the editing and translation... >> Learn more

8 comments


UnschathedSpade7
on 2/27/21

I was diagnosed with schizophrenia 20 years ago (not a common thing here I get that) and told that I would never be able to work again.  That statement proved to be both true and false.  While the symptoms have kept me from finding long term employment, or even part time time employment over the table, I often find work through friends and neighbors.  Everything from splitting wood and stacking it, to moving people in and out of their homes, driving folks around and even doing their shopping for them at times.  I suppose I specialize in finding odd jobs and working under the table, but this illness never made me useless, unreliable,  weak, or stupid.  Heck it never even kept me out of shape for very long.  What it did is make it very hard to maintain a schedule long term, and be around people who I don't know very well.  Anyway hope somebody finds this helpful or even relatable, and thanks.  


Teachwilt
on 2/28/21

I was diagnosed with bipolar in 1995. It was diagnosed while I was in a abusive marriage. I waited a year after and when my ssd came in he beat me one last time. The sheriffs office pick him up and to jail he went I have places that remained bruised. I was told my b/p was unpredictable and home I should stay 2005 I helped a friend out at her tutoring center. It was about 3 hours a day and she understood when I would a crisis. Then my church needed a secretary part time and I took that job and made it 3 years. I stayed home for about a year to regroup. My brothers friend needed a secretary so I said I would do what I could. I lost my ssd because I earned more money. 6 months later I had setbacks and at last I was fired. Now I have to restart all over. I am 60 now and a lot of my meds needed changing so we are doing that now. I would never suggest someone go to work unless part time. Before being diagnosed I was a nurse


Lkaufman
on 2/28/21

@Teachwilt We sound like we have a lot in common! I am also a nurse and have diagnoses of Bipolar and Major depressive disorder.  I am also getting my medications readjusted again (have been on many medications in the past and tend to burn out on them after a year or so.  I'm looking into transcranial magnetic stimulation to see if that can help me. Have you ever tried it?  Right now I'm open to trying anything that might give me relief, I keep trying to remember the acronym HOPE Hand on pain eases.  I hope you're getting ro will be getting relief soon from your symptoms.  


Teachwilt
on 2/28/21

I have not tried the transcranial magnetic stimulation. I have seen people who went through shock treatment and I know it’s different it scares me so it is at the bottom of my list. 


UnschathedSpade7
on 2/28/21

Teachwitt my girlfriend way back went through shock treatment and not long after was suffering from seizures, it was awful.

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