Overcoming Loneliness and Isolation
When I was first diagnosed with COPD there was no internet. Help groups, and good information was non-existent. Information was not given to the point I did not even know COPD was, in the severe stages, a life-threatening condition. Or that it was progressive.
As the months, and years progressed I felt as though I was the only person with a lung condition.
Knew nothing about COPD, and being in the then mild stage never gave it much thought. In them days, it was a lonely path without anyone to talk to about COPD. As the years continued to pass I became more knowledgeable – more breathless, and disabled. However, during this time, the internet with its vast information highway had arrived. Allowing me to do a huge amount of research – to read research papers written by very senior consultants.
I am lucky as I have a wife and family I can talk with. My family has ridden along the COPD journey with me, have encouraged me, not been put off by my slowness, and in the last six years of using oxygen for mobility, understood how hard it can be sometimes. Even so I, the most optimistic of COPD bloggers, has plunged into the depths of depression on a rare occasion. That dark pit of sorrow and self-pity that many of us can sink into. Sadly, for many of us living alone and isolated with no other to talk with that can plunge us into a pit of despair.
Loneliness is a dark place for many. But there are ways to help overcome this.
Those of you reading this article will have made the first step and be online with the whole internet in front of you to explore. This allows you to research any subject of your choice. Do you want to learn a new subject? I have completed university photography courses on the Internet with a certificate at the end. Maybe like me you enjoy writing. How about writing a blog, or article, such as this one? It can be about any subject. The world really is your oyster. Or maybe you would like to learn about where you can visit that is flat, or disabled friendly. I use Google earth to find good places, and research towns to visit where I can use my mobility scooter. I also do a huge amount of research into COPD online to learn the latest advances in medication and treatments. My specialist if more like a friend to me and is sometimes quite amazed that I have the newest information before he does. Even to the point that once I asked to try one of the new medications just approved here in the UK where I live.
There are many online help groups such as ‘We strive to breathe easier’, a group I formed a few years back. The advantages of belonging to a COPD group is members are from all parts of the world so you are sure to find someone online at any time of the day and night where you live. This means you can ask for, and usually receive advice, should you need it at any time.
COPD is far less frightening when you have others to talk with.
If you live alone research groups you might like to join. Here in the UK we have Breathe Easy groups, and many other organisations. In America you have many others you can also join, such as a Better Breathers club. Many organisations enjoy a social aspect. Meaning you can get out and about on a journey to somewhere different while making new friends and enjoying pleasant surroundings. Then there is the volunteering sector of which I do much work. You will be surprised at how what you have learned in life is welcomed by many. Myself I am on many boards as a patient representative with our Health service and other organisations Volunteering leads to making many new friends. Often leading to new opportunities to enjoy. You will be amazed at how much any input you have will be appreciated - even by those you may not expect to.
You could start out by becoming a volunteer for your local or national lung health organisation, or looking for research organisations that are looking for patient representatives. Many research projects now seek patient representatives. The advantage is you are not only helping others with your knowledge, but moving your body, and keeping your mind active. For me a win situation all round.
Before you say ‘well it's ok for you but’ – remember. I do all my work while using 6lpm of oxygen for mobility. Like many of you guys I get out of breath dressing and showering, doing most things. Life for me is in the slow lane. I once rode into a board meeting on my mobility scooter with my cannula on, I was having a worse than usual day, but that was a meeting I was determined to make. Not one at the meeting fluttered an eyelid.
Despite our disability, our breathlessness, there is a world out there.
We just have to reach out and enjoy. Don’t be alone. There really is no need to be.
Whatever you are doing remember to keep that smile. There is always someone worse off than us somewhere. Till I write again. Breathe Easy.
Do you have questions about your COPD diagnosis?