“Telling friends and family that you have cancer is worse than having cancer,” says one patient. “You see their face and know you just ruined their week. They look at you differently, but it also makes them think ‘Hey, if he got it, and he’s always been healthy and active, it could happen to me.’ It makes people consider their own mortality.”
Plus, cutaneous lymphoma is not like other cancers. It is a chronic, live-a-long-time-with-it disease and most people understand cancer to be dire and often deadly.
Friends may look at you and say, “Wow, you look great – you must be doing fine!” When, in reality, you may feel awful. Or, it could be a good day, after a sequence of bad days. Many cutaneous lymphoma patients look fine but feel terrible. Patients can become tired of explaining again and again about their disease.
Telling family can be an even tougher task because, again, with their common knowledge of cancer, they are likely to be fearful hearing this diagnosis. Everyone responds differently and may become distant or go into denial. Expect to do a fair amount of educating the people around you so they can become sensitive to what you are going through. Encourage them to contact an organization like the Cutaneous Lymphoma Foundation (www.clfoundation.org) to obtain their own information or speak with someone who can help them gain an understanding of what you are going through.
After people accept the reality of your diagnosis, you may find it challenging to explain symptoms like itch. Itching can be mind-boggling and unexplainable to others, especially the chronic component of it. Many patients claim that dealing with a symptom like relentless itching can be frustrating and even a mental struggle – something that you cannot explain to others.
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.