What Carenity members think about COPD

For the occasion of World COPD awareness day (November 15th), we have decided to ask the members of our COPD community for their opinion about the disease and its impact on their life.

COPD is not a very well-known health condition. Among our COPD members, 66% did not know anything about it before being diagnosed. It is said that the disease is strongly linked to smoking, and indeed, 74% of respondents smoked in the past. However, the remaining 36% have never touched a cigarette. Those who have succeeded in quitting smoking are very contented with the result: “since I gave up smoking last October and lost 3 stone since April this year I've been a lot better”.

It is also an invisible illness, which often tends to be mistaken for asthma or stress, due to its respiratory symptoms.

A serious condition, but can be controlled with a healthy lifestyle

COPD is a serious debilitating condition (according to half of the respondents), a condition that can provoke isolation and make a drastic change in the patient’s lifestyle: “It has turned my life around I have to get people to do things for me”; “I find I can no longer do a lot of the things I use to enjoy”; “It limits my ability to play with grandchildren for long”; “I feel very alone”. Some also talk about having no more sex life, or having to retire too early. In fact, the impact of COPD on professional life is what seems to bother the Carenity members quite a lot: “COPD has stopped my professional career”, “I have had to medically retire from work”, “feel I'm going to have to give up working because of my unreliability”.

However, a lot of them try to lead a normal and healthy life despite their diagnosis, go out with family and friends who understand and support them (“the difficulties I have are recognised by family”), and even travel, even though it means carrying inhalers and other devices with them all the time. 70% of the respondents do physical activities, either regular (“I try to do some exercises each day”) or occasional, and only 27% cannot do sport because they do not feel well. Physical activity is a part of COPD treatment, as it improves the overall state of health of the patient, strengthens muscles, and helps lose weight, which together with medications has a positive impact on the patient’s life.

Treatment effective for 20% of the respondents

The most popular treatment for COPD is, of course, oxygen therapy, as well as oral medications (corticosteroids, etc.). Even though our respondents are aware that the treatment does not cure COPD, and even though for 20% of them it is an obstacle to a normal social life, a quarter of them still find it effective: “At the moment the meds are helping, but also cause problems of their own”; “the treatment I get is very helpful”.  Only 6% of the respondents think that they are not very well taken care of by healthcare professionals: “I'm fed up of going to drs with problems and feel like I'm wasting their time because they do say blood tests and nothing else”, while others “have great care, so just get on with it”. However, 81% consider that there is not enough preventive care for COPD.

Preventive care means helping people to quit smoking, adopt a healthy lifestyle, do sports, but also making local doctors and nurses more available, doing more frequent tests, and in a more global way, establishing a healthier environment by fighting against pollution. This is one of the goal of World Awareness days. But preventive care also means prevention of COPD complications, which is equally important and concerns the same issues: healthy lifestyle, no smoking, diet, sports, etc., but is also focused on vaccinations (flu, pneumonia, etc.).

Turning to alternative medicine for better management of COPD

Apart from conventional treatment, there also exist alternative medicines, to which a lot of our members turn, in order to improve their overall health, and ease the COPD symptoms. Thus, 39% and 38% of the respondents go in for pulmonary rehabilitation programmes (which assist patients in keeping a healthy lifestyle by elaborating a programme of exercise and a healthy diet, and helping manage the disease on a daily basis, but also providing psychological support which is not negligible) and coughing techniques (which help clear the bronchial tubes) respectively, to improve their breathing. Diet seems to be as important in controlling the symptoms, as the first two non-medication techniques, with 37% of the respondents who find it effective (there are certain foods to avoid, others to favour, etc.). Then comes meditation with 15% of members who practice it, and yoga, not very popular among our respondents (only 9% of them have become yogi and yogini). Yet, yoga is said to be of great use for COPD patients, as it teaches you to breathe correctly, by learning special diaphragmatic breathing techniques.

These alternative medicines, together with prescribed medications and family support helps COPD patients get a better control of their condition and reduce its impact on their daily life by accepting the disease: “I'm on my own and I cope well with my C.O.P.D. as I accepted my condition”.

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Article based on the Carenity COPD community members' answers to a short survey conducted for the occasion of World COPD day in November 2017. We would like to thank all those who participated in the survey for sharing your thoughts and experiences and helping us consolidate them in this article.