A chronic condition such as chronic lymphocytic leukemia (CLL) can affect your quality of life emotionally, physically, and in other ways. Steps such as joining a support group may help reduce the impact.

The symptoms of CLL, along with treatment side effects and the requirements of managing a chronic health condition, can profoundly affect your quality of life. While some life changes are inevitable, you can take steps to minimize these effects.

The first step is knowing what to expect.

Everyone reacts to a cancer diagnosis with different emotions. You might feel:

  • shocked
  • numb
  • frightened or anxious
  • angry
  • guilty

Or you might feel only some or none of these emotions.

Doctors typically manage early stage CLL with a watch-and-wait approach. During this time, you may experience stress due to uncertainty about the future and the impact cancer could have on your family members, finances, and ability to work.

In one 2021 study, researchers found that anxiety or worry was the most frequently reported symptom among people receiving their first treatment for CLL. And a study from 2017 found that roughly one-fifth of people with CLL experienced substantial anxiety. Researchers associated worse anxiety with active treatment.

Many people find cancer-specific support groups or mental health counselors helpful. Organizations such as the CLL Society and the Leukemia and Lymphoma Society have resources that can point you to a support group in your area. The American Cancer Society also has a database that allows you to search for a support group.


Your diagnosis may affect your relationships and sex life, especially due to symptoms such as anxiety and fatigue. You may also find it difficult to express your emotions about your diagnosis with those close to you — and those people may find it difficult to know what to say back. This can cause a strain in some relationships.

Try your best to stay close to family and friends after your diagnosis. Opening up about your feelings may lift some of the weight off your shoulders. You may also find that speaking with a social worker helps improve communication between you and your loved ones.

Many people receive a CLL diagnosis when the disease is in an early stage and they have no symptoms. That means you may not have physical challenges in your day-to-day life at first. But fatigue is one of the most commonly reported symptoms in people with CLL, even in those who get a diagnosis at an early stage.

If your CLL progresses, you may experience additional symptoms such as:

  • shortness of breath
  • low grade fevers
  • unexplained weight loss
  • a feeling of fullness
  • night sweats

You may find that you need to adjust your lifestyle to cope with these symptoms. This might include changes to how you:

  • exercise
  • do chores such as cleaning the house, preparing meals, and running errands
  • care for children, grandchildren, or pets
  • plan or attend social events and other enjoyable events

Treatment can cause significant side effects, including:

A 2021 study suggests that decreased physical functioning is the most common symptom in people with relapsed or refractory CLL. The researchers also note that decreased cognitive and emotional functioning was more frequent among these people than among those receiving their first line of treatment.

If you experience CLL symptoms or treatment side effects, your healthcare team may be able to recommend ways to minimize them.


CLL may affect your sex life, especially during treatment. Changes in your sex life may be due to:

  • hormone production, which can affect your sex drive
  • your energy level, which can fluctuate
  • infection risk, which may increase as CLL progresses or as a result of your treatment
  • physical ability and CLL symptoms, such as shortness of breath
  • erectile dysfunction or symptoms of menopause
  • CLL symptoms and treatment side effects

During treatment, you may need to take extra preventive measures, such as using a condom or another barrier to avoid the exchange of bodily fluids.

This can prevent a partner from becoming exposed to chemotherapy medications, which can be present in bodily fluids. It can also keep you from becoming pregnant, if applicable. Doctors do not recommend trying to become pregnant while undergoing treatment since chemotherapy and radiotherapy can negatively affect a developing fetus.

Additionally, you may need to avoid sex when you have a very low white blood cell count and avoid vigorous or rough sex, which can cause abrasions, as these can increase your risk of infection.


CLL can cause night sweats and make sleep difficult. Stress and anxiety can also negatively affect sleep. Not getting enough sleep can affect your mood and emotions and increase your fatigue.

Maintaining proper sleep hygiene may help improve your sleep. You may want to try strategies such as:

  • going to sleep at the same time each night
  • winding down before bed
  • avoiding bright screens before bed
  • using a comfortable bed and bedding
  • keeping your bedroom cool, dark, and quiet whenever possible

CLL may increase your risk of developing infections. Additionally, low energy levels can make working more difficult, and other symptoms, including increased bleeding and easy bruising, can make a physical job harder or even unsafe.

You may want to speak with your manager or human resources department about getting extra support to help lighten your workload. You might also consider asking to work remotely if it’s possible in your role. Sometimes, a doctor can submit a note requesting these accommodations.

You may need to take time off work. Leave programs such as the Family and Medical Leave Act (FMLA) may allow you to take time off beyond any allotted days off you have while maintaining your health insurance.

You can typically use FMLA along with short- or long-term disability to receive a portion of your pay while you are unable to work. Your human resources department should be able to provide information about how to start a leave of absence.

Whether you’re still able to work or not, having a chronic health condition can cause concern about finances.

Social workers and nonprofit organizations such as the Patient Access Network Foundation and the Leukemia and Lymphoma Society can give you advice on locating financial resources that are available to you. And a social worker can help you navigate issues with insurance.

Strategies that can help you manage your CLL include:

  • keeping track of all appointments with a calendar
  • attending all appointments
  • taking medications as directed
  • reporting side effects and symptoms to your care team
  • joining a support group
  • speaking with a therapist
  • setting attainable goals and not pushing yourself too hard

You might also be able to improve your sleep and overall quality of life by:

  • engaging in some exercise during the day
  • drinking plenty of water
  • finding ways to reduce stress, such as meditation and deep breathing exercises

Can you live a “normal” life with CLL?

If you’re in the watch-and-wait stage, you’ll likely be able to continue your usual tasks without any effect on your physical abilities. But you may have increased anxiety about the future. Speaking with a support group or counselor can help you balance the emotional impact.

If you’re in a higher risk stage of CLL and are currently undergoing treatment, you may experience more physical symptoms and treatment side effects. Communicate openly with your doctor about your symptoms and side effects so that they can help you address them.

You may also want to reach out to friends and family or a nonprofit organization for support in completing regular tasks if CLL or your treatment is making them difficult to complete.

Can I live 30 years with CLL?

Some people with CLL may live for many years before needing treatment. Once treatment begins, they may have treatment on and off for many years.

According to the National Cancer Institute, 87.7% of people with CLL survive for 5 years or more. Although people who receive a diagnosis when they’re under age 55 are more likely to live longer, the 5-year survival rate remains high for those over age 65.

Thanks to treatment advances over time, the survival rates for CLL have gradually increased, especially among people who receive a diagnosis in the early stages. A 2014 study suggests that younger people with low risk CLL and certain mutations may have a typical or close-to-typical life span.

What should you avoid if you have CLL?

If you have CLL, a doctor may recommend taking steps to reduce your risk of infection, especially if you have a reduced blood cell count. This may involve:

  • avoiding crowded places or wearing a mask in public places
  • avoiding raw or undercooked foods
  • avoiding certain pet care activities, such as cleaning out a litter box
  • getting recommended vaccines but avoiding live vaccines
  • getting medical care for all infections

What is it like living with CLL?

In the early stages of CLL, you may be able to maintain your typical routine without symptoms. But as the disease progresses, you may experience symptoms that affect your physical functioning, such as fatigue and shortness of breath.

You may also experience anxiety and stress, regardless of your CLL stage.

In early stage CLL, you might not have any symptoms. But in later stages of CLL, especially while undergoing treatment, you may find fatigue, pain, and sleep disturbances particularly challenging.

You can ask your doctor for referrals to other healthcare professionals, such as physical therapists, nutritionists, and pain specialists, who can help you manage these quality-of-life concerns.