Contributed by Jim Nelson, consultant to CAIRE Inc. ~
It is easy, sitting there with your diagnosis and your oxygen cannula, to feel alone. (Or your cane or your wheelchair or your chemotherapy treatments. Choose your particular demons.)
Your friends are out somewhere having fun without you because you declined their invitation to join them. Rather than risk holding them back, rather than taking a chance that some stranger will stare at you, rather than being a “bother.” You have chosen to just hide. In addition, your family has no better than a dim realization of your daily challenges. The communication necessary to make them understand has simply not happened. It’s hard to get them to listen. Many times, they really don’t want to know. Not fair to anybody, but that attitude is out there.
So, what are you to do? How are you to find someone who cares, who understands? You need knowledge, you need support, you need answers! Well, here are a few ideas for you … your local office of the American Lung Association ̶ www.lung.org, the American Cancer Society ̶ www.cancer.org, or whatever other organization might fit your situation. Ask what kind of educational material they have available and ask if they sponsor any sort of support group. If they do not, they might know of other periodic meetings of fellow patients or caregivers. A support group is just that; a venue for learning, for exchanging information. For many, the support groups become like a family.
Contact the COPD Foundation ̶ copdfoundation.org. The Foundation was set up years ago for the purpose of seeking a cure for Chronic Obstructive Pulmonary Disease (COPD). They primarily deal with lung disease, but all of the various chronic diseases carry similar concerns. The Foundation has Advocacy Captains in most states, who organize events and educational opportunities. They are an excellent source of information on dealing with lung disease.
There are online support groups for just about any ailment that you can name. In most cases, there are many of them. Two that I am involved with are COPD Navigator (a public group on Facebook, copdnavigator.net), and Ultimate Pulmonary Wellness. (another Facebook group, pulmonarywellnessonline.com). They are both closed groups, but you can join through invitation. They are both actively run by specialists in lung disease and rehabilitation.
If you are a caregiver, there are sites that are designed for you and your responsibilities. Family Caregivers ̶ www.care.com ̶ offers advice on helping your parents to age at home. AARP Family Caregiving ̶ www.aarp.org/caregiving ̶ and the Alzheimer’s Association ̶ www.alz.org ̶ and the National Alliance for Caregiving ̶ www.caregiving.org ̶ all offer support and guidance to those of us who find ourselves carrying the responsibility of caring for a loved one.
I urge you to get on the Internet and search for support groups for your particular malady. Do beware of those who would sell you untested products or “cures.” There is an entire industry out there that is anxious to take advantage of those who are desperate.
By the same token, be a little careful about following the advice of anyone that you meet in a support group, either online or in person. What works for me might be ineffective or even dangerous for you.
So be careful, but please go find some support for yourself. There is a lot of it out there.
Love you all,
Jim Nelson is a double lung transplant recipient and a patient advocate for COPD patients throughout the U.S. and around the world. He and his wife, Mary, are well known patient advocates and brand ambassadors for those organizations who tirelessly endeavor to help those individuals who suffer from a variety of respiratory diseases and the caregivers who support them.
When using any oxygen therapy device please consult the applicable product instructions for use for product indications, contraindications, warnings, precautions, and detailed safety information.