Expert Answers: The Invisibility of COPD
COPD can be considered an "invisible illness", meaning that even though a person is sick, other people can't necessarily see that, and it makes it hard for others to understand what the person is going through. So, for COPD Awareness Month, we asked our experts this question on behalf of our community members...
“This condition is invisible! How do I communicate to my friends/family that I might look okay, but I definitely am not okay sometimes?”
Check out what they had to say, and share your thoughts in the comments!
Response from John
I think that COPD is one of those diseases where you have to be open and forthright with people, and you have to hope they love and respect you enough to understand. I think it helps when someone close to you, like your spouse or child, is involved with your care from the beginning. This should even include having this person go with you to doctor's appointments. This is also an area where COPD awareness is important, as the more people know about your condition, the easier it is to communicate with them.
Response from Leon
This is a sentiment that has been expressed by many people and community members 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 they are struggling or suffering is not completely evident to those around them, especially their family and friends. Some people feel as if COPD has struck them rather suddenly and without warning. And yet, this insidious disease may have been 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 and such a surprise, that it isn't so readily accepted by those who are closest to you.
First, you should know and learn all you can about COPD, the condition. There is a wealth of information all over the internet. There is so much information, that it is likely to be somewhat daunting as to which material to select to educate yourself. I would urge you to avail yourself of the informative articles that can be found on our website: COPD.net. Here you will find a range of information from the basic to the more sophisticated. It is easily searched and easy to understand as well as being scientifically based.
Whichever way you choose to get information, once digested, 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 condition 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 will aid them by providing candid access to what you are dealing with to cope with your illness. 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).
There is no question that living with COPD presents many challenges to a person's daily life. Developing and maintaining a strong support system of close family and friends can go a long way towards helping us cope with the illness on a daily basis, all year long. Anything that contributes to building that support system is worthwhile. Understanding all the ramifications of the disease, and how one lives with it, will help your family and friends love and support you even more.1-6
Response from Lyn
If possible, have a close friend or family member attend doctor’s appointments with you and be there for any discussions related to your COPD. This allows at least one other person to hear first-hand what you’re going through and what you need to do to manage it. Hopefully it will motivate them to do a little research on their own to understand COPD better. It will also provide you with an advocate that can be there to communicate to others in your circle of family/friends.
Sadly there are instances when a person simply doesn’t have a support system at all. When this is the case, I would highly recommend a support group that deals with lung conditions, even if it’s not COPD specific. The local American Lung Association may have a group that meets or a hospital in your community may have a program for out-patients. There are also online support groups (such as COPD.net) that are very helpful, especially for people that have trouble getting out. It allows you to connect with others that have similar issues and can sympathize and commiserate when necessary. You also have access to experts in the field that provide good advice and tips for managing your COPD.
How about you? What do you do to help others understand your life with COPD? Please share in the comments below!
Do you have an exacerbation toolkit?