Entering or Re-entering the Workforce

Information for people with ME/CFS

ME/CFS Society (SA) Inc (2006)

People with ME/CFS face considerable challenges when entering the workforce / returning to work. Each person with ME/CFS has a different story to tell. Work will not be a part of the management plan for some people. For those who are considering (re)entering the workforce there are strategies to increase the likelihood of success. A small number of ME/CFS Society (SA) Inc members have provided the following information about work and ME/CFS. It is not a definitive guide, but rather a sharing of experiences and ideas from people who have “been there-done that”. Many thanks to Melanie, Tracy, Andrew, ‘Jean’, Donna and others for sharing their experiences and ideas. Their personal insights are a useful starting point for those looking to enter or return to the workforce. Hints from people with ME/CFS Some of the Challenges

1) Finding suitable work Ask questions such as:

• What are the hours worked ( too many hours/ shift work)? • How much travel is involved? • What are the physical requirements of the position? • How stressful is the position? Are there significant time pressures? • How healthy is the workplace? 2) Negotiating with managers • What if they have little understanding of ME/CFS? 3) Pacing the work (intensity and hours worked) • How do you make it possible to maintain long term? 4) Taking time off • How hard do you push before taking time off? • How do you work out how much time to take off so that

return to work is successful? 5) Balancing work / study / life commitments • How do you deal with other people’s expectations? • How do you balance it all and pace yourself?

What helps it to Work (suggestions from people with ME/CFS)

1) Build a strong relationship with a supportive manager.

2) Keep communication about the illness open (2-way) 3) Look for flexible work hours / options for part time hours.

4) Work with people who are keen to support others and have an

understanding of ME/CFS, or are open to learning about it.

5) Modify duties – simple modification could enable long term success (eg: reducing travel components of jobs).

6) Work close to home or where good public transport options are available.

7) Accept support from family / friends to complete household duties.

8) Seek the help of an organization accredited to help you return to work

9) Prepare for some trial and error

“..it’s taken me at least 2 years to work out what I am capable of and what best suits me as a CFS sufferer.” Melanie

10) Try some volunteering. It will look great on the CV and will give you a

chance to pace yourself and try things out.

Do you tell an employer that you have ME/CFS? Informing your potential or current employer about your ME/CFS is a personal and complex issue. This is thoroughly explored on the following website: sites.uws.edu.au/rdlo/disclosure/employment/anytime.htm Ideas about disclosure, as shared by Donna, an ME/CFS Society member, include:

• At interview – if a question about health issues arises, answer truthfully. BUT word it carefully so that the employer knows you can do the job. If you are not asked at interview, you may choose not to disclose then.

• If you have fully recovered from CFS, you need not tell the employer

anything. It is no longer an issue and will not affect your work capabilities. If you still have CFS to some degree, tell your employer on your employment form. This way the company can not hold it against you if you are given the job and become too ill to continue. Also it helps the employer to be able to accommodate your needs and they will appreciate your honesty.

• Tell the employer that to a certain degree CFS affects you but you feel

that you are more than capable of being able to do the job and that your doctor will support this in writing.

“I have always been upfront about it because if I get sick and they don’t understand I don’t really want to be working for them in the first place.” Melanie

Organisations that help people return to work The following organizations may be able to assist you if you want help to maintain your current employment, to begin work or re-enter the workforce. You may be referred to one of them by Centrelink. Make yourself aware of their functions and aims. It could help you to have a say about your preference for referral. There are three primary provider ‘groups’

1) Commonwealth Rehabilitation Services (CRS) www.crsrehab.gov.au (ph: freecall 1800 624 824) The CRS Australia Customer Information Kit may be accessed on www.crsrehab.gov.au/196.htm

2) Disability Open Employment Services (DOES)

www.workplace.gov.au/workplace/Individual/DisadvantagedJobseekers/DisabilityOpenEmploymentServices Disability-specific organizations providing Government accredited programmes.

3) Job Network (JN)

www.workplace.gov.au/workplace/IndividualJob Network services all job seekers.

Websites provide lists of approved providers and locations. All can be accessed through Centrelink or it is possible to self-refer to CRS. Ideas from someone with ME/CFS who also works for a Disability Employment Agency Tracy has negotiated her own study and work arrangements while living with ME/CFS. She has worked for a Disability Open Employment Service for nine years. Her ideas about the benefits of using a disability/ illness specific organization include:

• The agency can educate employers about ME/CFS before you start and this can help alleviate their concerns or misconceptions. It also means that you don’t feel alone.

• The agency can help organize work trials for you. You can test out

different kinds of work and different hours to see what works for you.

• If you have a job, but have hit a rough patch, Disability Employment Agencies can assist you to keep your job. They can help you negotiate modified duties or hours.

General Government disability and employment services information may be accessed on www.facs.gov.au/internet/facsinternet.nsf/disabilities/services-nav.htm Information for graduates with disability / illness looking to enter the workforce may be obtained at www.graduatecareers.com.au/content/view/full/318