How to Find Positives When Living With IPF
For most people, a new year brings new opportunities and often, a strong desire to bring on changes and try to achieve new goals. Some make those goals about physical changes, while others might look at social goals.
Some may choose mental or emotional health improvements, such as striving for tasks that will make them happy or engaging in activities that feel good for the soul. For those who want to improve their mental health, small but intentional changes to how one thinks about things can make all the difference in the world.
Someone who had to face this challenge head-on is Australian Olympian, Janine Shepherd. Janine was hit by a truck while riding her bike, leaving her a partial quadriplegic. As she lost the ability to do many physical things independently, Janine began to suffer from depression (something many IPF patients can relate to). She wondered if life could ever be good again. As she explains in her TED Talk “I Am Not My Body,” she reframed “why me?” to “why not me?” after a particularly life-changing experience with a young woman in the hospital bed next to her.
With having full physical abilities, it’s easy to become consumed in daily tasks that can make days fly by at lightening speed. But being forced to slow down due to your illness can seem burdensome and unfair. However, if you reframe having to slow down, life can be a lot more beautiful in slow and quiet moments. You can learn to appreciate the quiet — finding a sense of peace and calmness that couldn’t exist in the chaos of life before.
According to the literature, IPF patients have a shortened lifespan due to the eventual inability to breathe. This will always seem unfair to patients, but consider this: perhaps a life is better lived in quality than quantity. Most people naturally take life for granted, whereas patients diagnosed with a life-threatening illness learn to make the days count.
Others not understanding
One of the challenges of living with IPF is that it’s not a common disease, so most people can’t understand what it’s like regardless of their intentions. This might make friends disappear, when you can no longer do the things you once did, or share in their same interests. While this might make you sad, it could be said that an IPF diagnosis shows people’s true colours and shows you who your true friends are. Embrace the people who stick by you no matter how difficult it gets.
Coping with Emotions
I feel really depressed. Should I talk to someone?
Yes. It is not unusual for patients with PF and their families to feel depressed or anxious. You may experience feelings you wouldn’t necessarily label as depression but coping with these feelings is still difficult. Talk to your doctor about what you are feeling. Your doctor can recommend a therapist or counselor who can help you work through your emotions. Learn more.
Where can I find support from other patients?
Support from other people facing PF is very important. You can join an online support community and attend an in-person support group. Pulmonary rehabilitation is also a great place to connect with others facing lung disease.
Can I get a lung transplant if I am over 65?
Maybe. Every transplant center has their own specific criteria. Some centers are moving the upper age limit to 70 or 75 years. Your eligibility for a transplant depends on many factors, not only your age. Learn more.
When should I get on a lung transplant list?
The sooner you are evaluated at a transplant center, the better you will understand the process. The transplant center will become familiar with you and able to identify when you need to get on a list. If you’re evaluated, it doesn’t mean you need to get a transplant, but it is good to gather information shortly after you are diagnosed.
Taking Care of Your Mental and Emotional Health
Studies show that depression among people with IPF is very common. If you have any of the symptoms described below, talk to your healthcare team:
- Feelings of hopelessness and helplessness
- Change in sleep patterns
- Weight gain or weight loss
- Loss of pleasure or interest in things you usually like to do
- Social isolation
- Feelings of worthlessness
Your healthcare team can help get you counseling and even prescribe medicines if they determine that’s what you need.
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