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Survivorship Guide for Bone Marrow/Stem Cell Transplant
Coping with Late Effects

Returning to Work

Whether or not you go back to work after transplant depends on many things – your health, your stamina, your interest in your past profession, your budget, and your prioritization of life goals. For most of us, there is no right or wrong choice. In some cases, the decision to go back to work may be based on practical considerations, such as the need to maintain health insurance benefits. If work inspires you or helps you reclaim your sense of health and normalcy, you may want to jump right back in as soon as you can. If your job is stressful and/or you are still dealing with low energy, then taking your time and easing back into work slowly with a part-time schedule might be better, if this option is available. If you are still dealing with a variety of treatment aftereffects, then going back to work may not be an option at all.

I feel that work is the thing that keeps me sane and feeling part of the world.

I have not been able to return to my pre-transplant work/life routine due to fatigue. This has been particularly frustrating as I remember what I used to be able to do and find that I am not able to work or do many of the things I used to enjoy.

Work helped take my mind off my health issues. I was really never tired and was able to go right back to work.

I was able to return to law school five years post transplant and start a free legal service for cancer patients. My professional life has been greatly influenced and directed by my medical experience.

After the transplant my confidence was shaken, and I wasn’t sure if I could be independent financially. Luckily, I was able to find a good job and work fulltime. Although I loved my job and was successful, it was also taxing, and I felt I had no reserve energy left for the rest of life. I now work part-time.

My main employer was very good in allowing me to come back at my own speed. I have fully resumed my career.

Advocating for Yourself

In our culture, independence and success are often measured by our professional achievements. This can make it more difficult to accept limitations or admit that we may need work accommodations. However, advocating for yourself and getting the accommodations you need is an integral part of ensuring that you are not compromising your hard-earned health by going back too soon or for too many hours. Sometimes it is difficult to know in advance how work will affect your energy level or how many hours you will be able to work. If you think that you need to ease into work slowly or that overwork is affecting your health, speak to your supervisor, human resources department, or personnel office to ask for changes that would make it easier for you to do your job.

Be sure to be open with management about the need for gradual reacclimatization. Before returning to work, let them know that you will need more frequent doctor visits and tests, and that their understanding is needed.

Finding New Work

If you have big gaps in your resume due to medical care, you might consider listing your jobs by skills and competencies rather than dates. Or, if you would like to include dates of employment but want to de-emphasize the gaps, list the other things that you did during the time you were not working due to illness, such as taking time to raise a family, listing an interest that you pursued, or noting volunteer work you performed.

Although employers cannot ask you specifically about your health, they can ask employees to take medical examinations as long as they are required for all employees. They may also ask disability-related questions as long as they are jobrelated and consistent with business necessity. However, the employer cannot take back a job offer unless the medical exam shows that you cannot perform the essential functions of the job (with or without reasonable accommodation). A job offer may also be withdrawn if the employer can prove that the job poses a threat to your health and safety, or to the health and safety of others. Employers may not ask disability-related questions or require medical examinations of job applicants prior to extending a conditional offer of employment.[16]

Although some people feel locked into a job because of their past health history, there are federal and state laws that are aimed at protecting people with medical conditions and disabilities from discrimination. Despite the existence of these laws, sharing your cancer history or health concerns with a new employer should be done only after careful consideration.

Do I Need to Tell My Employer About My Cancer History?

Hiring, promotion, and treatment in the workplace should depend entirely on ability and qualifications. Unfortunately, some employers may discriminate against you if they know you have had cancer or another serious illness. In discussions with your future employer, emphasize your strengths and capabilities. Generally, it is recommended not to discuss any of the late effects of transplant or your medical history unless it directly affects your ability to perform your job. However, you should also make sure that the information you give is accurate. You do not need to tell the “whole truth,” but you do need to make sure that what you say or write does not contain any falsehoods. If you are caught lying on a job or insurance application, you may lose your job.[16]

If you know that you will require modifications to your job, you will need to notify your employer of your disability and the need for reasonable accommodation. You may ask for an accommodation at any point in the application process or during your employment. Your employer is only required to provide you with reasonable accommodations if you inform him or her that you have a disability. Reasonable accommodation may include changes such as a modified work schedule, telecommuting, or additional rest breaks. It does not include changes to the essential functions of the job. You are still required to perform these functions.

How much information you give about your health history and health status should be evaluated on a case-by-case basis. Although it is generally recommended that you disclose as little as possible, there may be exceptional circumstances in which your medical history may make you uniquely qualified for a job and may not be seen as a liability. However, revealing your health history before you are hired should always be done thoughtfully.

After I was offered a job at a hospital, I told the HR department that I took immunosuppressants to manage GVHD. The offer was then withdrawn because all new hires were required to be fully vaccinated. Due to my immunosuppression, however, I was unable get the mumps, measles and rubella (MMR) vaccine, which is a live vaccine. It was only after I appealed and threatened them with an investigation by the Equal Employment Opportunity Commission, that my job was reinstated.

You may also be concerned about discrimination based on your medical condition when you already have a job. If you feel you are being discriminated against, a first step would be to familiarize yourself with your company’s policies and your legal rights. Your company’s policies are often spelled out in an employee handbook or on their intranet site. Equal Employment Opportunity and Family and Medical Leave Act policies also should be posted in your workplace. You can get additional information about your legal rights from the Equal Employment Opportunity Commission (EEOC) at www.eeoc.gov.

Speaking to your employer about the company’s obligations and your expectations can sometimes resolve problems and prevent escalation. If you cannot reach a mutually acceptable solution through discussions with your employer, you will need to decide whether you’d like to invest the time and energy in litigation, which can be expensive and difficult, or if you should just move on and get another job. Sometimes pursuing legal action can be gratifying and can yield positive results. However, litigation can also be stressful and is often very expensive. If finances are a concern, there are a number of organizations that provide free and low cost legal services. Certain national organizations such as the EEOC can help in these situations, or you can do an Internet search on “cancer” and “legal assistance” or “legal referrals” for more local listings. Depending on the situation, you will need to decide what is best for you and how you’d like to proceed.

Americans with Disabilities Act

The Americans with Disabilities Act (ADA) and the Family and Medical Leave Act (FMLA) are the two main federal laws that protect individuals from job discrimination.

The ADA applies to employers with 15 or more employees and to employees working at state and local government agencies. Under the ADA, you can’t be fired or discriminated against because of a disability or because of a record of having a disability as long as you are able to fulfill your job duties. There may be additional laws in your state that provide protections as well.

In order to receive protection under the ADA, you need to qualify as a person with a disability. The definition of disability is broad and covers many different kinds of conditions.

Under the ADA, a person can qualify as disabled if they:

  • Have a physical or mental impairment that substantially limits one or more major life activity(ies), such as concentrating, sleeping, eating, walking, caring for oneself, etc.
  • Have a history of a physical or mental impairment which substantially limits one or more major life activity(ies), or
  • Are regarded as having an impairment.[12]

Individuals with late effects of cancer and cancer treatment may fall into one or more of these categories. Employers are not required to lower job standards in order to make an accommodation. However, they are required to make reasonable accommodation unless they can prove it would be an undue hardship to do so.

Even if you do not think that you meet the ADA’s definition of disability but believe you need accommodations, you can discuss this with your employer. Some employers will be willing and able to accommodate employees even if they do not meet the ADA definition. Furthermore, many state and local laws have a broader definition of disability than the ADA and also can require employers to make reasonable accommodations. So even if you are not entitled to an accommodation under the ADA, you may be entitled to one under state or local law. For more information about the ADA, go to www.ada.gov.

Reasonable accommodations may include:

  • Getting reassigned to a less demanding job
  • Restructuring a job
  • Working flexible hours or part-time
  • Obtaining a period of leave time

I returned to work part-time at first, and my boss was wonderful in allowing me to modify my duties…I tired easily and didn’t want to be exposed to many people. Fortunately, my boss was very understanding about this.

Family and Medical Leave Act

Patients and survivors, as well as their spouses, children, and parents, are also protected by the Family and Medical Leave Act (FMLA). This act allows individuals to take up to 12 weeks of unpaid medical leave from work in a year to care for their own medical needs or that of a seriously ill spouse, parent, or child. The FMLA applies only to employers with 50 or more employees. To be eligible, a person must have worked at the company for at least one year and a minimum of 1,250 hours in the year prior to the leave request.

Under the FMLA, employers must allow employees to return to their same position or an equivalent position with the same pay and benefits except in narrow circumstances, such as when a position is eliminated in a layoff. Although employees do not get paid during FMLA leave time, they may be able to qualify for short-term disability benefits or to use accrued sick leave or vacation time during their FMLA leave. During FMLA leave, employers are required to continue to pay their share of the health insurance premium for the employee. Employees must also pay their share of the premium, but can make arrangements to do so before, during, or after their leave.

Some states have more generous laws that allow cancer survivors and their families to extend their time off work beyond the 12 weeks required by FMLA. Even families that have obtained all the time off required by law may be able to obtain additional time off. How long an employer must hold someone’s job depends on how much hardship it creates for the company, and also on the state in which the employee works.

For more information about the FMLA, go to www.dol.gov/compliance/laws/compfmla.htm.

Helpful Workplace Resources

If you can no longer do the work you did in the past and need retraining, there are many resources available. Many states have a Department of Rehabilitation that can provide vocational training, or there are organizations that provide grants for job retraining. You can find resources for job retraining in your state by doing an Internet search on “job retraining” or “vocational training” in your particular state. If you are on Supplemental Security Income (SSI), the Plan for Achieving Self-Support (PASS) allows you to set aside money to go to school, start your own business, or achieve other goals that help you become self-supporting.

If you feel you have been discriminated against, you can contact the EEOC through its website at www.eeoc.gov or call 800-669-4000. The EEOC offers live customer help and will provide free legal services if you have a legitimate claim. There are additional organizations that provide free or low cost legal advice and advocacy for cancer survivors. You can access these and other workplace-related resources in the Resource Listing under “Legal Rights and Workplace Issues.”

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