5 Fears About Unemployment for Pulmonary Fibrosis Patients

Pulmonary fibrosis (PF) is a progressive and life-threatening disease for which there is no cure. This means that a patient’s ability to function and complete daily tasks will change dramatically. Unfortunately, this may affect their career choice and eventually, it can affect the patient’s ability to work at all. For someone who values their career, along with the passion and challenge it brings them; losing the ability to work can feel comparable to the loss of a beloved item, or a favourite hobby or even comparable to the loss of a limb for some people. For some, being unable to work is one of the hardest things to accept.

For many PF patients, there are very real concerns that accompany the idea of unemployment. Unfortunately, there aren’t many solutions to these common concerns — and the anxiety surrounding these concerns doesn’t help with a patient’s ability to cope with their disease.

Some concerns and fears regarding unemployment from a patient’s perspective, include:

1. Boredom
Living with a chronic illness is lonely enough since it feels like most people can’t relate to what you’re going through. On top of that loneliness, the days can become long and unstructured which can lead to a feeling of boredom. (Contrary to most people’s beliefs, watching TV, crafting and resting becomes redundant and boring when you do it every day.) Boredom can also be bad for mental health, as it leaves room for negativity, which can start wreaking havoc on a patient’s ability to cope.

2. Loss of social connection
When a patient is part of an organization that fosters community and support, the impact of unemployment can be minimized. While some patients may be able to achieve this through personal friendships and relationships; others adore their colleagues and feel disconnected when they can no longer be at work.

MORE: When to consider professional help while dealing with PF

3. Loss of productivity and purpose
Unstructured days can be a good thing periodically. However, repeatedly having nothing to do can make patients feel lost. Employment puts purpose into day-to-day living, and gives people a sense of productivity and accomplishment. When this is taken away, your purpose is redefined but that new definition is often not nearly as meaningful as it was when you had a career that was important to you.

4. Financial implications
The financial implications that come with unemployment (with or without a chronic illness) are overwhelming, and are likely among the top reasons a patient does not want to give up their career. The fear of not being able to pay for medications, rehabilitation expenses, or just the costs of daily living, can become a huge stressor for those living with a chronic illness.

5. Perception from others
Unfortunately, the stigma around disability and whether or not someone can actually work with an illness still exists. There is this perception that in order for you not to work, your disability or chronic illness must be physical or visible, when this is not the case for so many patients. PF is an invisible illness and yet it is often fatal; something most people wouldn’t understand unless they know and love someone with the disease. If you’re unemployed, there is often a very real fear of how others will perceive your situation. No one wants to be unemployed, especially due to a chronic or life-threatening illness, but there are people out there who would unfortunately argue that being on disability or not having to work is better than working full-time. This is a very hard perception to contend with as a patient with a chronic illness.

Do you have other fears about being unemployed due to your chronic illness? If so, please share them and let others know how you are combating those fears if you have had to give up your career.

MORE: How to help others deal with your disease

Lung Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

4 comments

  1. Timothy Middleton says:

    This article is useless. Only one of these is correct. I don’t think we worry about social perception, boredom, etc. When we are trying to stay alive. We lose our jobs we lose benefits and that’s what we worry about.

    • Charlene Marshall says:

      Hi Timothy,

      Thanks for your input on my column. Everyone is different and thus, have different worries, fears or anxieties related to their disease. I know several people living with IPF who do worry about the social perception of it (especially if they are young and needing to use disability parking spots, etc), as well as a fear of being bored and not having a purpose for their life if their career is taken away. Please be mindful of things that others might worry about, and the fact that they will be different from what you worry about, and please use sensitivity in your comments in future.

      Thanks,
      Charlene.

  2. Phil says:

    Hi,
    I was recently given Idiopathic Pulmonary Fibrosis diagnosis by my GP following X-Ray and CT Scan for chest infection clarification due to some lingering muscular type soreness/discomfort around the back of my upper rib cage and shoulder blades. It was unexpected and pretty devastating news given to me quite coldly and I was back outside the doctor’s GP surgery and on pavement in about 5 minutes!!!!

    I already had long term chronic problems of arthritis, genetic ischemic heart disease, recent cirrhosis of liver(NFLD)diagnosed 2014 but had fought my way back off periods of Incapacity benefits/unemployment into full time employment in 2012 ongoing.

    I am now currently on sick leave since diagnosis in mid July 2018 but due to try and return in September some time. My employer has arranged a Occupational health assessment face to face doctor appointment for 3 September 2018.

    In past couple of years I managed to fight for and obtain a 2 days at home and 2 days in office(4 day week contract of 32 hours Monday to Thursday(8 hours per day) with Fridays now being a non contracted/non work day.

    I have tried to encourage my employers to allow me to work from home on all 4 days due to my exhausting and aggravating 3 hour round trip commute on my two office based work days or at least allowing me to work from home 3 days with only one office based day per week. However, I have always been unsuccessful so far.

    Whilst I am currently just focusing on fighting back and coming to terms with the shock of this diagnosis and possible/probable death by suffocation in the next 2 or 3 years, I am also worried about my financial situation and the implications for my wife and children and grandchildren, as I am only just turned 60 and need to work at least till Jan 2021 to qualify via NI contributions for UK state pension(which I am only due to receive from age 66(ie from 8 January 2024).

    I have an interest only mortgage with around £25000 still outstanding which needs repaying by June 2022.

    In January 2018 after my 60th birthday and before my diagnosis, a previous employer pension was made available to me which I only expected to have access to from 2023. The 2 options they gave me were £15000 lump sum plus pension per month of £454, or £23000 lump sum and reduced monthly pension of £346. I went for the second option with the larger lump sum and lower monthly pension.

    My current employer pension since my start in 2012 was a final salary pension but this was ended in March this year due to untenable/unsustainable costs to employer and they transferred us now onto a defined contribution type scheme since April 2018 via a private insurance/financial company here in UK, Aviva. So the one I have been transferred into has very little pot due to only starting in April this year. Even if I somehow was lucky enough to work until I was 65, I think the projected pot would provide a monthly pension of £50 per month

    The final salary type scheme I believe, as I only have had that one since my commencement in June 2012, may currently at the end of that scheme in March 2018 only have a monthly pension of about £150 per month and a small lump sum.

    I am very worried about the OH assessment appointment for 3 September and how I should deal with the situation and what to say to the Occupational health doctor. I am very worried that my GP appears to feel I should not go back to work at all(particularly as it is a casework type job and quite stressful at times as I have a caseload of doctors to deal with, who have been referred for investigation of their overall Fitness to Practise in the UK. Also she seems to believe that whilst my employer will initially appear/try to be supportive and accommodating up to a point, that based on her knowledge and experiences, she feels that eventually they will see me as a problem to be dealt with and ultimately removed from employment with them.

    Certainly a very isolating and stressful and complex situation I find myself in, not to mention quite scary! I do understand there are lots of other people/individuals trying to live and deal with this terrible condition/diagnosis and we should all respect each others opinions and feelings and worries etc and comments.

    I would say from my brief time since my devastating diagnosis in July 2018 that there appears to be no immediate support/treatment or cure from the NHS/mainstream healthcare point of view other than possibly a couple of drugs I have read about that may slow down the scar tissue deterioration etc of the lungs plus possible oxygen, steroid support once things start to go downhill, plus consideration for a lung transplant outcome if appropriate and if ever available.

    It appears that average timeline of potential death of patients from time of diagnosis is approx 3 to 5 years(although I am a bit unsure as to how our health physicians etc know at what stage individuals are at at time of their diagnosis situation). For instance I was told of my diagnosis in July 2018 but my wife feels I may have had breathing issues for at least a year before this?

    Having used an online company GoodHealthNaturally in the past with some pretty good success to deal with my heart disease and liver problems(particularly via supplementation of their Serrapeptase Enzyme product(originally derived from Japanese silkworms) which when taken regularly for a particular period can lead to the enzyme eating/demolishing all dead tissue including arterial plaque and possibly scar tissue on lungs, I am currently taking these enzymes now and appear to be feeling alot better already. I have also signed up for a free Health Coaching mentoring session(1 hour by phone) with option of 5 more spread over a period of my choice for £40 in total. These mentors and related sessions will discuss my overall health(including history) and current diagnosis etc and together we will plan some possible supplementation options(depending on individual affordability of client/patient) plus lifestyle and diet changes/suggestions towards moving in a direction to try and achieve a position whereby the body can once again begin it’s natural healing process quite quickly.

    I also contacted and received a very thorough and hopeful and supportive response from regenerativenutrition.com company/website including a proposed plan and possible supplementation options towards helping me fight back against the Pulmonary Fibrosis. So I live in hope but still fear the worst at times.

    Anyway, if anyone wishes to contact me etc about this disease and dealing with it, please feel free to do so and I will try to help.

    Many Thanks Phil,Liverpool,United Kingdom

    • Charlene Marshall says:

      Hi Phil,

      Thanks so much for reading my columns, and for getting in touch via the comments!

      I am so sorry to hear of your recent IPF diagnosis, and yes it sounds like the news was given you to pretty coldly and candid. It’s so unfortunate because a diagnosis like this, as you say, is devastating. I hope you’ve since found the support you need to move through the motions of digesting such a diagnosis.

      Based on your post, your occupational health assessment with the doctor would be today (September 3rd) … I am thinking of you and hope it goes well! It is so tough having to be off for chronic illnesses, and it sounds like you’ve given it your all in terms of trying to work as much as you can. Kudos to you – it sure is tough, especially with a 3 hour roundtrip commute. I hope you don’t have to take public transit for that roundtrip, I know how scary it can be to fear getting sick on public transit. I always wear a mask if I have to take it, and will avoid taking it all together if I can. That said, I know the latter isn’t always a possibility for people. I hope you have more success with your employer considering 3 or 4 days per week working at home, as opposed to your current 2 days. I’ll keep my fingers crossed for you!

      I hope your doctor isn’t right in thinking your employer will eventually lose their accommodation interest and remove you as an employee. That is my biggest fear, and part of me knows why your doctor thinks that … because it happens, unfortunately. I do hope your assessment today with the OH team goes well for you.

      Thanks for sharing the link too Phil to the natural supplements company, I am going to look into it and others might find it beneficial as well! Will you proceed with lung transplantation if it is presented as an option for you?

      Take good care, and if you are interested in chatting more with other PF patients, please feel free to join us in the Pulmonary Fibrosis News forums at: https://pulmonaryfibrosisnews.com/forums/

      There are a number of wonderfully supportive people on there!
      Be well,
      Charlene.

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