Facing the challenges

Cutaneous T-cell lymphoma (CTCL) is a disease that can change the way you look. With CTCL, you can have dry patches, red skin, plaques, skin ulcers, and tumors.  You can also have severe itching and discomfort. All of this can affect how you feel about yourself. You may find that you have lost interest in being with others, which can make you feel alone and depressed.  CTCL can also affect your life in other physical, practical, and emotional ways.

Physical effects

You may have difficulty:

• Sleeping because of itching and discomfort
• Finding comfortable clothes to wear
• Following your normal routine because skin care may take extra time
• Using your hands because of scaling and cracking
• Working or exercising because of fatigue or the condition of your skin
• Being intimate because you may feel self-conscious about your physical appearance or because of fatigue or restrictions resulting from specific topical treatments

Practical effects

Physical discomfort and fatigue may cause you to have difficulty with certain activities, such as:

• Working
• Enjoying your hobbies
• Cooking or cleaning house
• Doing errands

Emotional effects

You may feel:

• Embarrassed by the way you look
• Lonely because you are spending less time with other people
• Scared about the disease and what your future may hold
• Depressed because of the changes the disease has caused
• Angry at the diagnosis and the limits the disease has put on you

Talking with others can help

You may wonder how you can live — and enjoy life — with CTCL.  You are not alone. Others have felt the same way. And they have found ways to manage the challenges and start enjoying life again.  Talking about these concerns and feelings with a family member, friend, or someone on your healthcare team can help you find solutions and support.