Talk to a dozen lung disease patients and you’ll come up with a dozen different experiences to answer the question, “What’s it like to live with ILD?” One constant: It’s never all about the lungs.

While interstitial lung disease acts on the barrier between the lungs and the bloodstream, its effects can be felt throughout the body. With modern medicine and scientific research continually improving, though, our healthcare teams are always coming up with news ways to ease pain, increase quality of life and treat both superficial and painful ILD symptoms, no matter where in the body they are.

Doctor with female patient


Lung conditions often trigger heart problems. It’s not surprising. Like many other body systems, they work together to keep you alive. ILD impacts the entire circulatory system by limiting oxygen exchange in blood cells. The less oxygen your blood circulates, the harder your heart needs to work. That can result in a variety of heart problems, including everything from hypertension to arrhythmias to severe right ventricular dysfunction.

To ease the stress breathing puts on your lungs and your heart, talk to your doctor about incorporating breathing exercises into your daily routine. These exercises can slowly improve your lung function, making it easier to breathe over time, increasing your ability to do normal activities every day and improving your heart health.

Strength and endurance

Your muscles rely on a constant supply of oxygenated blood to function optimally. Because of that, the impaired respiration caused by your lung disease limits the way you do things. Even mundane activities like housework and walking the dog can feel impossible. Not only do you feel breathless, but your muscles also aren’t getting the nutrients they need to propel you forward.

Breathing exercises can help you regain some of your muscular strength and endurance. However, it’s just as important to adjust your daily routine so that you can keep up with your life, your family and friends and your physical health. An in-home caregiver or housekeeper can help you with tasks around the house, while a consultation with a personal trainer who’s familiar with chronic disease patients can give you exercise options that work for you.

Body weight

When you have ILD, breathing is its own workout. In fact, when you have ILD, you burn 10 times more calories than someone without chronic lung disease. That means weight loss and malnutrition are common symptoms experienced by ILD patients. Some people with ILD may gain weight due to poor diet, side effects of medications or lack of exercise due to shortness of breath.

A nutritionist can craft an eating plan that will help you meet your dietary needs every day. Supplemental nutritional drinks, along with vitamins and minerals, are often prescribed for gaining weight. Portion control, limiting fats and simple carbohydrates and increasing fruits and vegetable intake are often recommended for losing weight.

Severe weight loss can also change the way your body looks and feels. As your body burns off fat deposits, you might find yourself unable to stay warm without additional layers. Pile them on! Because fat cushions your skeletal system, you might also be uncomfortable sitting or standing for long periods of time. Padded and supportive shoes and cushions on chairs can help you deal with this side effect.

standing on bathroom scale

Mental health

People with chronic illnesses experience mental health disorders more frequently than the general population. This is true for lung disease patients, too. One study showed that about one-quarter of ILD patients experience symptoms of depression and anxiety. Other studies have shown even higher rates.

As your lung disease progresses, it’s important to ensure that you’re treating your mental and emotional health as well as your physical health. Your doctors can prescribe a variety of medications to treat imbalances in your brain. Meditation, gentle exercise, enjoying nature, time with loved ones, journaling and artistic activities have also been shown to improve mental health.

Fingers and toes

For decades, doctors have noted a strange sign that signals a deeper medical problem. It’s called digital clubbing and it affects the appearance of the tips of your fingers and, occasionally, your toes. In early stages, your nails will just look different. As the underlying disease progresses, nails tend to look wider and more convex. They might be shinier. The end of your finger can also look wider or bulbous.

The good news: digital clubbing is superficial. It can look weird and it could signal the presence of an inflammatory disease, but it doesn’t cause pain and shouldn’t interfere with your everyday life.

Male doctor with female patient

Your next step

More and more doctors are treating chronic diseases with a whole-body approach. If you have interstitial lung disease and you’re struggling with symptoms beyond your lungs and your respiratory tract, speak with your specialist and bring more doctors—and more specialists—on board your healthcare team, if necessary.

Often, the best way to improve your quality of life is to focus on treating symptoms outside the normal purview of your respiratory specialist. Enlist their assistance to help you get on the right track.

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