There are many things people do not know about cystic fibrosis. One of which: cystic fibrosis (CF) is a very isolating illness.
In films about people suffering from a condition, often there is a scene where the sufferer attends some form of support group: getting to meet others with the illness, sharing stories, getting to relate to each other’s struggles and being made to feel less alone throughout it, by knowing that others are going through it too.
This is not the case for people with Cystic Fibrosis. In fact, we are recommended not to be in physical contact with each other. This is in order to prevent cross infection (literally meaning swapping infection we have with each other). In CF it is very difficult to get rid of an infection once it has been caught. The mucus in my lungs are thicker and stickier than a person who does not have CF. When a ‘normal’ person catches an infection, the mucus in their lungs help clear it. However if I, or another person with CF catches an infection, the mucus being thick makes infection easier to grow and harder to clear. This makes it very easy for me to catch chest infections, with the common cold being quite a risk.
In order to keep us all separated at my clinic appointments, all CF patients are put in to individual consultation room. The doctors, nurses and specialists go around all the rooms to see all the patients, as opposed to the patients going in to the room to see the specialist. This is to prevent the spread of infections between patients. When we are finished our appointment our room has to be completely disinfected before allowing a different CF patient to use that room. We are not allowed to sit near each other within the waiting room, thus must go to a nurse as soon as we reach the clinic to be put somewhere ‘safe’ to sit away from other CF patients.
We are advised not to meet up out with the hospital either.
As inpatients we are in isolation, literally. We are all given individual rooms when possible.Because we are in a Cystic Fibrosis ward, we are advised against leaving our rooms, to prevent us coming in contact with the other CF patients. When a doctor, nurse, or anybody comes in the room they must wear a white apron and discard it before leaving the room. We are also advised not to share anything with other people with CF, for example a magazine.
Due to all these procedures in place, it sometimes feels like I have been forgotten about in my room, and in actual fact the staff have occasionally forgotten to give me dinner! (But clearly this shows how quiet and good a patient I am)!
Therefore, while we are all at the same clinic, and in the same ward, we never actually see each other, or get to know one another. This can be very difficult. Especially when we are made to feel like a walking form of contamination by the measures which must be in place: this does nothing for our confidence as a person.
Of course I have a very supportive family, and friends who understand that it’s very difficult to have this condition. However, there is something about a shared experience which makes one feel better about a situation, and that shared experience is hard to come by in cystic fibrosis.
This is one of the reasons I decided to start the blog: over the internet is one of the few ways we can meet and communicate, while never actually being able to meet in person.