Adults
Getting a job
In most cases, cystic fibrosis shouldn’t limit your choices when it comes to finding a part-time or full-time job. Some things to think about when looking for a job are:
- Is it easy to get from your home and your cystic fibrosis clinic to your workplace?
- What is the physical environment like at the workplace? Are there any obvious health risk issues such as bad air quality or dusty conditions?
- What are the facilities like? Is there a kitchen with a fridge, well-maintained bathrooms and a rest-room or first-aid room? Would you have to climb stairs to get to work or is there a lift?
- Does the employer offer flexible working conditions such as work-from-home or flexible hours?
- What is the sick leave allowance, and (if you need it) would they let you have extra unpaid days off?
You have no obligation to disclose your cystic fibrosis when you have a job interview, and anti-discrimination laws make it illegal for employers to ask about any medical conditions. In fact, if you do not wish to disclose your cystic fibrosis at all – even after you get a job – then you don’t have to.
For more information about employment and the workplace, visit our Work and Cystic Fibrosis Factsheet.
Work and cystic fibrosis
People with cystic fibrosis are living longer and healthier lives than ever before and for the first time, there are more adults than ever before joining the workforce.
Cystic Fibrosis Queensland believes that you should be able to live the life you want to live, including your choice of career, but there are some important considerations to take into account when you’re looking for employment.
As far as possible, cystic fibrosis should not be allowed to limit your choices of employment. Reasonable adjustments could be made to enable you to undertake the many roles in the workplace. When you are researching and applying for jobs, do think about what the role is likely to entail and what, if any, adjustments might be needed.
The following questions might help in reviewing your options:
- Are there any obvious health and safety issues, for example infection risks or other direct risks to your health?
- Is the working environment suitable for you and your symptoms?
- Is there a canteen, staff fridge, suitable bathroom or perhaps even an equipped first aid room?
- Is the building itself accessible? For example, is there a lift you can use?
- Are there flexible working arrangements such as home working, flexible hours or even the possibility of having annual leave in hours rather than full days?
- Does the organisation have public liability insurance, workplace agreements etc.
- Do you have personal insurance? If you become too ill to work, health insurance may provide you with an income.
Having cystic fibrosis does not necessarily mean you won’t qualify; it depends on the company.
Also think about:
- Does the company have a disability policy?
- What is the sick leave allowance? Would it be possible for you to have extra (perhaps unpaid) days off if required?
- When should you tell an employer you have cystic fibrosis?
The appropriate stage for an employer to ask health questions will often be after a job offer is made, but before you start employment. Talk to your employer about cystic fibrosis and the support that you may need.
Cystic Fibrosis Queensland is also able to speak with your employer and to run education sessions for staff and your direct team.
It is best to be straightforward (though consider seeking specialist advice if you think questions are inappropriate or unnecessary). If you are not asked about your health, the information you decide to volunteer is a very individual choice, as is identifying the right time to negotiate adjustments.
For more information about employment and the workplace, visit our Work and Cystic Fibrosis Factsheet.
Having a family
Fertility for women with cystic fibrosis
Women with cystic fibrosis have anatomically normal reproductive tracts and normal hormonal function. The ovaries, the fallopian tubes and the uterus are all expected to be normal.
Women with cystic fibrosis usually have normal menstrual cycles and are able to become pregnant. Increasing numbers of adult women with cystic fibrosis are becoming pregnant and giving birth to healthy babies, with minimal impact on their health. If you are healthy, with stable lung function, pregnancy is safe. However, pregnancy puts additional strain on your body, and can be a risk, particularly if you are unwell or have poor lung function. It is recommended that you discuss your plans with your cystic fibrosis team, and that you are as healthy as possible before conceiving.
Fertility for men with cystic fibrosis
Men with cystic fibrosis produce sperm normally and their testes produce normal levels of testosterone. Testosterone is absorbed directly into the blood and is responsible for gains in muscle mass and sexual feelings. Men with cystic fibrosis have normal levels of testosterone and therefore normal sexual developmental and sexual function.
Approximately 98% of men with cystic fibrosis have problems with the development of the vas deferens, the duct that leads sperm from where it is produced in the testes to where it is stored prior to ejaculation. Therefore the ejaculate produced does not contain sperm. This means that most men with cystic fibrosis cannot conceive a child through sexual intercourse. Men with cystic fibrosis are still able to have biological children using assisted reproductive technology.
As well as sperm, semen contains fluid made by glands called seminal vesicles. In men with cystic fibrosis, these glands don’t function normally and are sometimes absent. For men with cystic fibrosis, the ejaculate will contain fluid produced in other parts of the reproductive tract. Even though the volume of fluid may be reduced, sexual function is not affected. Sex will feel the same as it does for men who don’t have cystic fibrosis; it will also feel the same for their partners.
It is possible to find out if you are fertile or not through a test called semen analysis. You can ask your cystic fibrosis team or your GP if you are interested in having this test. There is no right time to have semen analysis. Some people want to know if they are fertile in adolescence, and other people may choose to wait until they are thinking about having children.
Lung Transplant
Cystic fibrosis is a progressive condition so there may come a time when your lung function declines substantially. A lung transplant replaces diseased lungs with healthy donor lungs and is a treatment, not a cure. The main goal of lung transplants for people with cystic fibrosis is to extend life expectancy and improve your quality of life.
Australia has some of the best transplant results in the world and survival after a lung transplant is higher in Australia than anywhere else. Most patients report returning to a relatively normal life after their lung transplant.
Mental Health
Good mental health is an important part of treating cystic fibrosis, both for people living with cystic fibrosis and the people around them. Mental health impacts on physical health, and conversely physical health also affects mental health. You can’t treat one in isolation from the other.
Find out more about looking after your mental health here.
If your feel that you need to explore options for professional help to work through intense emotions and overcome obstacles, visit Beyond Blue.
