"I'm ashamed to go out with a bomb on my back." Lily spends most of her time at home due to a serious illness
Lilly is sixteen years old and, like her peers, she would like to spend time with friends and enjoy her adolescence. However, due to a serious chronic lung disease, she is dependent on oxygen support and spends most of her time at home. Greater freedom could be brought to her by an oxygen concentrator, thanks to which she could go out more often and bring more ordinary activities back into her life. When did Lilly's first health problems appear? And how does the disease affect her everyday life and adolescence? We talked about this and more with Lilly and her mother.
When did you first notice that something was wrong, what difficulties did Lily have and what led to the examinations during which doctors finally discovered her serious lung disease?
MUM: Well, Lily had been ill since her first months after she was born, but we first noticed about two years ago when she started having an abnormal cough. So she had an MRI scan done and that's where it was discovered.
And what was it like for you to receive the diagnosis and what did the doctors actually tell you about how the disease would affect Lily and what treatment she would need?
MOTHER: It was easy, it's hard to even talk about it, but it's simply a blow.
I understand. Now I would like to ask Lily. Lily, please, do you remember the moment when you yourself realized that you could no longer live as before because of the illness, and what specifically did you have to stop doing, and what do you miss the most from all of that?
LILY: Well, I realized it right on the first day when they brought me that oxygen. What I miss the most is socializing with friends and going out and just being free without it.
Now I would like to ask Lily's mother again. What does Lily's typical day actually look like from morning to night? How often does she need the oxygen and what all do you as a family have to monitor and adapt to her health condition?
MOTHER: So Lily's day looks like this: after waking up and hygiene and administering medication and measuring saturation, she actually spends most of her time at home. But actually she spends most of her time at home because it's not possible for her to spend the whole day somewhere else where she might want to be. And so when we don't go somewhere by car, we're in the garden, which we have a few meters from the house. And actually that's, you could say, everything. She can't do much, actually she's limited in movement. So she stopped doing all her things that she loved.
And if you had to name it specifically, what do you think the illness took away from her ordinary life as a teenage girl and how did this change affect her psyche and your whole family?
MOTHER: Well, it took away from her that freedom that every peer of hers has. And that affected her psyche a lot.
Now I would ask you again, Lily, when your friends write to you to go out, for example, or if you'd like to sleep over at your grandmother's or your sister's, tell our viewers what specifically prevents you from doing that and what it's actually like for you.
LILY: Like, I'm ashamed of it, I have to say. And what prevents me most from going out with that bomb on my back is so that people won't judge me for who I am.
Let me ask mom again. Now more positively. What specifically would change for Lily and for you as a family if you had an oxygen concentrator that you can transport by car, for example, to grandma's, to your sister's, or on some joint stay?
MOM: Yes, everything would change. Actually, as I mentioned, her freedom, that she wouldn't have to spend that time just with me at home. And absolutely everything would change. I think it would also affect her thoughts, that actually changing that environment.
Lily is starting high school, she told us she wants to be a chef, she loves singing and music. So I would like to ask, what would you as a mother wish for her to be able to experience again at sixteen just like her peers?
MOTHER: We would all wish for her to be happy and to know that she can do the things she loves. To experience first love.
Lily, if you had a concentrator tomorrow and could spend more time away from home thanks to it, where would you want to go first and what are you looking forward to the most?
LILY: So first I would probably go to my aunt's in Germany. And what I'm looking forward to most is that I won't be at home all the time and that I could go out.
You can help Lily through the public collection of the Our Lungs Foundation Fund, which is listed on the Darujme platform.
Source: author's survey, Our Lungs Foundation Fund
