Dealing with interstitial lung disease (ILD) can take an emotional toll. It is important to know that there are ways to cope with the emotions so that you do not isolate yourself from life, family, or friends.

Feeling Low While Living with ILD

Most people with ILD will experience a variety of emotions. Feeling low is not a sign of weakness. Many people diagnosed with an illness have similar feelings and experiences. Keeping open communication with family, friends, and your healthcare team is very important as they can help you to manage your emotions.

Be Open About Your ILD with Your Loved Ones

Being open about your ILD may help your mental well-being. Sometimes, you may find it difficult to talk with your family and friends about ILD. Most people have never heard of ILD and are not aware what you are going through.

Through learning more about your condition, you may find it easier to explain it to others and get support to help you cope with negative feelings you may have.

Change the way you explain ILD depending on who you are talking to: a simpler explanation may be better for children or grandchildren than for adult friends and family.

An example of how to explain ILD to young children:

“My lungs work differently now. You may have seen that I move a little slower and that my breathing sounds different. I still want to play with you, but you may need to be a bit patient while I catch my breath.”

For older family members and friends:

“You may have noticed that I move a little slower than before and that my breathing sounds different. My lungs work differently now because I have a condition called ILD. This means that my lungs are not functioning as they should, which causes me to feel breathless. I do have support from my healthcare team and it’s important that I take care of myself.”

Staying Active and Maintaining Hobbies

Recognize that you will likely need to adjust your lifestyle and may need to rely more on those close to you. This does not necessarily mean that you must stop doing the things that make you happy. Try to stay active and remain positive. Having family and friends by your side and joining a support group may give you the support you need.

Support groups

Talking to other people who are going through a similar experience may help you in coping mentally with ILD. In a support group, you will meet other people who are going through similar experiences to you. This gives you the opportunity to make new friends and share feelings about your daily lives. Support groups sometimes invite guest speakers, who will help to give you other viewpoints on your ILD.

Eat well

The types of food you eat may impact your mental well-being. Making sure you eat a well-balanced diet that maintains a healthy weight is important because being overweight or underweight can affect your breathing.

Relaxation techniques

These may help you deal with the everyday stress of ILD, by relaxing both your mind and body. Techniques can include meditation or mindfulness, where you focus on the present without judgment. Some people also find yoga useful.

Pulmonary rehabilitation, staying active, and exercise

There are lots of ways to stay active (walking, gentle strengthening, or bicycling ), and exercise has been shown to help patients with ILD cope with daily activities and improve overall well-being.

Social activities and hobbies

Keeping up with friends and family and enjoying the things you love to do may have a positive impact on your mental well-being.

Speaking to a Mental Health Professional

You should not suffer alone. You may need to speak to a professional counselor. He or she may suggest different options to help you cope, such as relaxation techniques or exercise. A psychiatrist, psychologist, or support group can also help you cope.