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How I stayed positive after being diagnosed with a lung condition at a young age

Sofia tells us her story about being diagnosed with an interstitial lung disease in her 20’s. She also shares what it’s like living with a lung condition and what she wishes others knew about her condition.

In 2014, at the age of 28, I was diagnosed with an interstitial lung disease (ILD), a condition which can cause scarring and inflammation in the lungs. In 2017 I was also diagnosed with pulmonary arterial hypertension (PAH) and then in 2020 I had a pulmonary embolism.

I also live with Lupas, Sjogren syndrome and rheumatoid arthritis. These conditions combined have made my day-to-day life difficult. I am now 37 years old, living in Leeds with my four lovely children. However, I now cannot work. I find it difficult to stay active, am on a lot of medication and under specialist care. But, by researching my condition, looking after myself and enjoying each day with my children, I manage to stay positive. I hope sharing my experience can help others find out how best to look after themselves with a lung condition, even at a young age.

I wish that people would take my lung condition more seriously

I find that people often don’t take my lung conditions seriously, but these conditions have impacted my life, and it can be hard to deal with each and every day. It really means a lot to someone who is in pain when they receive comfort and empathy rather than judgement.

If someone is showing symptoms and is in pain, give them support and be kind. It doesn’t take much to say a few comforting words to someone who is suffering.

It is so important to be positive and never take anything in life for granted

My experience has shown me that you never know what is around the corner, I was a healthy young woman until my diagnosis in 2014.

Being diagnosed at a young age was difficult, with my children only being between six and one years old. I found it tough, as my body was changing, I was in pain and discomfort a lot and on high doses of medication.

However, I dealt with this by taking each day slowly, and trying not to exert myself too much. I stayed positive by focusing on my children, who were a beacon of hope and have kept me motivated through the toughest of times.

Find out how your lungs work

I have done a lot of research into my condition and how I can best look after myself. You may not realise there are certain resources out there for you. You have to do the best you can to look after yourself, and that includes discovering more about your own condition and how your lungs work.

I search for information on the British Lung Foundation website. It’s really important I can stay knowledgeable about my condition and know where I can seek help from. Their advice has definitely helped me learn more about my condition and how to look after my lungs.

The last year has changed my life dramatically.

During lockdown, it was hard to go out as I get very breathless. I can’t do much with three lung conditions and at times, it did make staying positive difficult. However, I do my best to look after myself by making sure I don’t catch infections to keep my lungs safe. I also like to surround myself in a positive atmosphere so that I feel at ease and happy. I always aim to remove any and all negativity and I love to look on the bright side of life. This keeps me feeling optimistic about living with my lung conditions.

I make sure to do my breathing exercises regularly. I do them sitting down, moving my chest and taking deep breaths. I also try to keep my diet healthy and balanced and I make sure that I don’t stress over the little things anymore.

I’m so grateful to my family, who have been amazing at keeping me positive. My husband has supported me from day one and I don’t know what I’d do without him. My children are now between 9 and 15. As they are older, they help me out a lot. Being their mum has helped me so much over the past 9 years. They give me hope and I am thankful that I get to be here with them.

I would suggest for anyone who has just been diagnosed with a lung condition to seek help and support if you need it. There are so many resources available to you. If you have questions or just want to chat, The British Lung Foundation helpline is open on 03000 030 555 between 9am and 5pm, Monday to Friday.

If you want to learn more about your lung condition like Sofia, visit our Support for you page where you can find information and advice about living with a lung condition.

 

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9 September 2021

Last medically reviewed: September 2021. Due for review: September 2021

This information uses the best available medical evidence and was produced with the support of people living with lung conditions. Find out how we produce our information. If you’d like to see our references get in touch.