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Helpful Information About Living with ILD

As with other serious medical conditions, you may find being diagnosed with interstitial lung disease (ILD) to be a confusing and overwhelming experience. People living with ILD may experience a number of challenges that often come with a range of feelings. These may include:

  • Breathlessness from simple, normal activities
  • Anxiety and fear of anticipating a decline in their ability to function
  • Fear of becoming a burden on family and friends
  • Feeling less sexually attractive (especially if using oxygen therapy)
  • Concern about using up family financial resources on healthcare costs
  • Less desire to participate in social activities
  • Difficulty maintaining relationships
  • No longer desiring to travel because it is too burdensome

You may want to work with your healthcare provider to try to find strategies to cope with these feelings.

Experts recommend that healthcare teams carefully evaluate each person’s support systems and their ability to cope with the challenges of ILD. This assessment can help the team determine what type of support may be required so they can help people find the resources they need. Psychological and spiritual support should be considered as part of the comprehensive care of people with ILD. This comprehensive approach has been shown to help enhance the daily lives of people with ILD and may help reduce their fears about the possible progression of ILD.

Read information with advice on how to work with your healthcare provider to help get the best possible care.

You’re not alone in your experience with ILD. Be inspired by others living with chronic ILD with worsening fibrosis by connecting online or at a live event in your area.

Other important tips to consider:

  • Get vaccinated. It’s recommended that all people with ILD receive a yearly flu vaccine and appropriately scheduled pneumonia vaccines; vaccination is critically important to preventing illnesses that can further worsen lung function.
  • Take part in pulmonary rehabilitation (when prescribed). Pulmonary rehab has been shown to improve the ability to exercise in people with ILD; it also has been shown to improve a person’s understanding of ILD and reduce their anxiety about it. Learn more about pulmonary rehabilitation.
  • Use oxygen therapy. If your healthcare provider has prescribed oxygen therapy, you should use it according to your healthcare provider’s instructions. Many people with ILD find that oxygen therapy helps reduce their feelings of breathlessness. Learn more about oxygen therapy.

Get Support

As with others who have serious health conditions, those with ILD may find it helpful to join a support group to reduce their anxiety and find comfort. Experts agree that giving people with ILD access to support groups may contribute to helping them address their unique needs. If you are interested, ask your healthcare provider or check with a local medical center to see if there are support groups in your area. Joining a support group may help you adjust to living with ILD and learn more about it. You can meet other people who have the same symptoms and find out what they do to cope with them.

There may not be a local support group in your area, and maybe you can’t or don’t want to travel to the nearest one. Or, perhaps there is a local support group, but you would rather not attend in person. If so, another option to consider is to join an online support group. They can offer many of the same benefits, while the information and support they provide can be accessed from the comfort of your home. Learn about online support groups.

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