Editor-in-Chief, Hepatitis C Virus Advocate
Hepatitis C (Hepatitis C Virus) is a highly stigmatized disease.
Revealing a diagnosis of Hepatitis C Virus can cause anxiety on a number of
levels. The ramifications of this disclosure can impact
medical, marital, family, insurance and other area of one’s
life. Common feelings that people experience when considering
disclosing their Hepatitis C Virus status include:
- Fear of disclosure to family and friends as well as
disclosure in the employment environment
- Fear of seeking medical treatment and having Hepatitis C Virus
documented in their medical records
- Fear of denial of health and life insurance
- Fear of infecting loved ones
- Fear of dying
- Fear of being viewed as a disease rather than as an
- Fear of losing control over bodily functions and life
- Fear of losing employment
Most of these issues can be helped by telling family,
friends or business acquaintances and seeking either
professional or peer support. However, people have to be
careful who and what they tell people because of potential
consequences in their personal and business life.
Family and friends
Telling family and friends about Hepatitis C Virus status is important
but can be difficult if not properly thought through. People
should be advised to wait until they feel that they have
enough facts and that they are emotionally ready before
divulging their status. Most likely the first people they will
tell would be their spouse or significant other because of
potential risk of exposure and because of the need for
emotional support. Another reason to tell family and friends
is the need for help, support and understanding. However,
people should be cautious and think carefully about who they
tell. Try to identify the potential problems that might arise
by disclosing this information. Telling loved ones can be a
traumatic experience for the person disclosing and for the
person that is receiving the news. A newly diagnosed person
should consider the situation carefully because a family
member or loved one may have a difficult time with the
diagnosis. Furthermore, they may need emotional support that
the newly diagnosed person is unable to provide.
Some questions that newly diagnosed people should ask
Are you ready to take on the emotional issues that are the
consequences of telling people you have Hepatitis C Virus?
- Do you have enough facts to answer basic questions to
alleviate others’ fears?
- Do you trust the person you are confiding in?
- Will this help you or will this bring you more problems?
- Will keeping this information a secret create more
problems than disclosing it will?
Having support from family and friends is extremely
important so they can share their fears and feel supported.
Some preparation with facts and educational materials may help
in the process.
Disclosure in a Business Environment
Disclosing Hepatitis C Virus status in a business environment should be a
carefully thought out process. The Americans with Disability
Act offers many protections from a legal standpoint, but there
could be other less obvious acts of discrimination
The Americans with Disability Act (ADA) allows for certain
protections from discrimination in the work place. ADA
describes disability as a physical or mental impairment that
substantially limits one or more of the major life activities
of an individual. A recent court ruling limited the reach of
the Americans with Disability Act by ruling that a disability
cannot be measured solely on the ability to do certain tasks
at work, but must also be permanent or long lasting. It is
unclear exactly how this will impact ADA in the long run, but
before disclosing a medical status to an employer an
individual would be well advised to consult with the ADA or a
A person that is designated as disabled is entitled to
protections from any practices in the workplace that could
affect wages, benefits, application procedures, job
assignments, promotions, etc. But just because someone has Hepatitis C Virus
does not automatically mean that they are entitled to these
benefits. For example, if a person has asymptomatic Hepatitis C Virus
disease they are not automatically entitled to protections.
However, they may be entitled to benefits and protection if
they are experiencing Hepatitis C Virus treatment side effects. In addition,
one cannot be terminated from employment just because they
have Hepatitis C Virus. Furthermore, employers with 15 or more employees
must provide reasonable accommodations—the key is
‘reasonable’ and the accommodations must not cause undue
hardship on the employer. These accommodations could include
time off for doctors’ appointments, providing additional
unpaid leave or job restructuring, and granting a flexible
All this is well and good, but an employer can make it
difficult to pursue these benefits. The entire issue of
disclosure in the work place must take into consideration
discrimination that may not be so apparent. For instance,
someone with Hepatitis C Virus could be perceived as being chronically
fatigued and may be passed over for job promotions. Another
potential problem is discrimination from co-workers because
they fear exposure to Hepatitis C Virus.
Questions someone should ask themselves when considering
disclosing Hepatitis C Virus status at work:
- How will it affect the day-to-day working environment?
- How will it affect future promotions?
- How will it affect working relationships with coworkers?
- Is it is really necessary to disclose at this time?
On the other hand, if someone is experiencing symptomatic
disease, it could be beneficial to talk with their employer
about their Hepatitis C Virus status so that the employer can make certain
accommodations. This may be particularly important for someone
that is considering Hepatitis C Virus therapy because there is a possibility
they will experience moderate to severe side effects that may
require a work schedule change, job responsibilities or other
Employees that feel they are being discriminated against or
are not being given reasonable accommodations can start a
grievance process. For more information about ADA call
1-800-949-4232. Some states offer broader protections than the
ADA. Contact your local disability office.