COPD can be called an “invisible illness” because people can’t tell you have an illness at all by looking at you. There are so many people in our community who’ve talked about how hard it is when family and friends don’t understand how COPD is making them feel, because it’s something you cannot see. So, since we’ve been talking about the invisibility of COPD lately, we asked our experts:
How can I explain to my friends/family that I might look fine, but it doesn’t mean I’m doing fine?
Check out what our experts had to say!
Response from John
You can think of it as a headache. You can look perfectly fine when you have a headache. So, if you don’t tell someone you have one, they might never know. Similar to a headache, you can feel COPD symptoms yet still look fine on the outside.
Headache can be a COPD symptoms, but the most common one is feeling short of breath. When symptoms are invisible in this way, it can be very frustrating to deal with and difficult to explain to others who feel fine. However, it’s always helpful to have someone who understands how you feel, especially as you learn to cope with living with a chronic lung disease.
Response from Leon
This is a common sentiment expressed by many people who have been diagnosed with COPD. It’s been said that since the damage and the illness is on the ‘inside’, the extent to which the person is struggling or suffering is not readily apparent to those around him/her, such as family and friends.
Some patients feel as if COPD struck them rather suddenly and without warning. But, the reality is the disease is ravaging one’s lungs for years before a proper diagnosis is even made. In fact, sometimes the symptoms of COPD (e.g. shortness of breath, wheezing, coughing, mucous production and fatigue) may have been dismissed as normal signs of aging, a smoker’s cough, a slow recovery from a cold, or just being out of shape.
Sometimes, your own friends and family have subscribed to this rationale as well. When the diagnosis is finally made, it may be so unexpected that it isn’t readily accepted by those who are closest to you.
First, you should know and learn all you can about COPD. I would urge you to avail yourself of the informative articles that can be found on our website: COPD.net. Once you have a better understanding of the disease, you will be in a much better position to explain your condition to your family and friends. Even in that regard, you will have support. Again, our website has many articles devoted to just this sort of topic; how patients with the disease can educate their friends and family about COPD in an effort to build an even stronger support system.
If you belong to a COPD support group, or participate in pulmonary rehabilitation, you may want to invite your closest friends/family to go with you. This can help them immensely by providing direct access to what you are dealing with in order to cope with your condition. This also can be applied to your physician appointments or anything connected to your COPD treatment (e.g. diagnostic testing such as bloodwork, radiological tests, pulmonary function testing).1-6
Response from Lyn
It can be very discouraging to feel like no one understands our situation and what we live with each day. It’s especially disheartening when it’s those closest to us, such as family and friends. Sometimes just a sentence or two is enough to remind them that things are not always as they seem (or look).
So, if someone says, “you look fine” or “you don’t look sick at all,” you might try saying something like, “Thank you for that, I’m glad you think I look good, but it’s a daily struggle. I’d be happy to tell you more about COPD if you’d like”. Or, you could say with a bit of humor, “It’s smoke and mirrors. I don’t feel nearly as good as you think I look”. Or, how about, “It’s such a relief to know I don’t look as bad as I feel”.
If you have to cancel plans because of health, don’t feel like you have to make excuses and apologize. Simply say, “Today is not a good day, I’ll have to take a rain check on our plans. I hope you can understand”. Then, don’t feel guilty! Your health is more important than trying to meet everyone’s expectations.
Try to remember, that most people are sincerely trying to make you feel better. They don’t mean it to sound like they doubt your illness. So often, a few short words to bring them back to reality will do the trick.
How about you? What have you tried telling people so they better understand the invisibility of this disease? We’d love to hear your thoughts!
Is Chronic Obstructive Pulmonary Disease an Invisible Disability?
http://www.disabilityliving.ca/disability-canada-chronic-obstructive-pulmonary-disease-invisible/ (Accessed August 2017)
http://spirohub.com/wp-content/uploads/2016/01/BLF-Invisible-Lives-report.pdf (Accessed August 2017)
https://copd.net/basics/ (Accessed August 2017)
Expert Answers: Explaining COPD to Family & Friends
https://copd.net/answers/expert-answers-explaining-to-family-friends/ Accessed August 2017)
Explaining COPD to Family and Friends
https://copd.net/living/explaining-to-family-and-friends/ (Accessed August 2017)
Help Your Friends and Family Understand Your Life With COPD
https://copd.net/living/help-friends-and-family-understand/ (Accessed August 2017)