I forget I’m using oxygen until I notice someone staring at me
Caroline, 60, a retired teacher, has been diagnosed with pulmonary fibrosis (non-specific interstitial pneumonia), and mixed connective tissue disease. She started using oxygen in 2009 and describes how people’s attitudes to her use of oxygen have affected her.
I was prescribed oxygen because I was having difficulty trying to do some of the exercises in a pulmonary rehabilitation class. My consultant organised for me to have ambulatory oxygen, which straight away helped me to exercise. After a while I had to use it for walking and getting out and about but now use it 24/7.
Generally, people don’t understand what it is like to have oxygen, but why would they? Most people are fine, but some can be a little patronising. The truth is, most of the time I am okay and can look after myself.
Eight years ago, I went along to a museum in London with my son, who was studying art at school. One of the stewards approached us and was very well meaning but quite patronising about using oxygen.
I was pretty active back then and I didn’t need as much oxygen. The steward said to me how good it was that I was able to get out and about. I don’t think she had any idea that I worked full time!
My son got quite angry, because he found her really condescending. You do get that kind of thing happening to you now and then, but I think people are just trying to be kind. I think it is because for many people the only time they encounter someone with oxygen is when that person is incredibly poorly in hospital.
I try to keep as active as possible
I have been using oxygen all the time for about seven or eight years. It helps me live my life as best as I possibly can. Most of the time I forget that I am using it.
I’ll be out and about and somebody will be looking at me and I’ll think, “what are you looking at me for?” Then I realise, it’s because of the oxygen. When children stare, which is perfectly natural, I give them my biggest smile and they always smile back!
I have only lived in Frodsham for three years and although it’s very friendly here, it wasn’t very long at all before people recognised me. I don’t think they remembered me because of my lovely face – it was the nose hose!
I am quite active, and I need to stay active because I am on the list for a single lung transplant. I need to keep as fit as I possibly can. I get a reasonable amount of exercise going shopping, I drive to the supermarket, grab a trolley and walk slowly around the store.
My sons have introduced me to the latest virtual reality set, and I do a bit of that, which is great fun and helps me get up and moving. Like many people, I have a treadmill in my bedroom that has a lot of clothes on it. I should use it more often than I do!
People didn’t always realise I was struggling
Before I was on oxygen, people didn’t always realise I was struggling. I used to get out of breath and have to stop where I stood. I would have to walk for a short distance and then stand and wait and recover before I could carry on.
When I lived in Kent, I used to go into London and use the tube. In most underground stations you can use an escalator but there are some where there are only steps. In that case I would have to do a few and stand and then wait, to catch my breath. Rush hour is not good when you are standing on a busy staircase. Understandably people are not very considerate.
When you are not on oxygen, it feels like people just think you are lazy or unfit, whereas when they notice your oxygen tubes or cylinders they know you have a medical condition and that you are doing your best. I know some people who need oxygen are reluctant to use it as they are very self-conscious.
When people tell me that I tell them not to worry - it’s like a blind person holding a white stick – it alerts other people that they need to be careful, and conscious of your needs. And of course, it allows you to do so much more than without!
It would be nice if society would be more accepting of those of us who use oxygen
I help run a couple of support groups with Action for Pulmonary Fibrosis – it can be really helpful for folks to be able to talk to other people going through the same thing. It is especially important when people have been newly diagnosed or have been prescribed oxygen for the first time. It would be nice to think that in the future, people with lung disease will feel supported outside of these groups, and that society will be more accepting of those of us who use oxygen or get breathless easily.
The Taskforce for Lung Health is working to increase awareness of lung disease. You can read more about this in our five year plan.