A Patient’s Guide to Understanding
Cutaneous Lymphoma
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You may find that the people who are most supportive are not the ones
you would have expected. Many patients say that those individuals who
are there for them the most are acquaintances or neighbors or members
of their faith community, people they would not have considered turning
to, whereas some family or close friends may be surprisingly distant and
unsupportive. Accept this at the beginning. People deal with serious
diagnoses in a variety of ways and an inability to cope with a friend or loved
one’s disease is their problem, not yours.
While you are managing your disease, try to not fall into the trap of
managing the emotions and reactions of those around you. When someone
is not supportive, work through your disappointment and move on to those
people who are supportive. Surround yourself with only those people who
help you, not hinder the healing process.
Facial outbreaks can make it difficult or painful to shave, eat or even talk.
Such symptoms can affect your social life. Some people prefer to remain
at home during such outbreaks as people aren’t always kind when they see
them. For formerly social people, this can be a devastating change – to
be stared at, like an oddity, and some people choose to adopt a reclusive
position during outbreaks. This can be emotionally difficult for people who
prefer to be very social.
It can be hard to make plans. Some patients find that, on a good day, they
schedule an outing or a get-together with friends but, when the date arrives,
their symptoms render them unable to fulfill the promised activity. Friends
should be understanding. There will be times that you can keep plans, take
vacations or otherwise make good on a scheduled outing, and there will be
times when it’s just not possible.
Ultimately, it is imperative to surround yourself with people who care
about you and try their hardest to understand what you’re going through
and provide the kind of support you need. Whether it is a local community
organization, family group or faith organization, find a place that provides
non-judgmental support and rely on those individuals when the going gets
tough. Find additional, professional support and assistance if you need to
supplement the support from family and friends. A professional psychologist
or other type of healthcare provider can assist in working through disturbing
feelings and depression.
