CF and Body Image
If you stand in front of the mirror, are you happy with what you see?
If you stand in front of the mirror, are you happy with what you see? If you answered no, you are amongst the 25-35% of the general Australian population who also answered ‘no’. For people with cystic fibrosis (CF) that rate is up to 10% higher. Body satisfaction can be linked with overall well-being and health, and for people with CF that can mean nutritional adherence and respiratory health.
There are a number of common reasons people with cystic fibrosis are dissatisfied with their body:
Many people with CF have normal, positive eating habits and maintain a good BMI (body mass index), but with the extra pressure to eat extra calories even when there is little desire to do so, some develop abnormal eating behaviours, skip enzymes, over exercise, restrict calories and insulin and steroid use. Most people with CF find it hard to keep weight on, but with new and improved treatment including new medications like Kalydeco®, there are growing concerns around obesity. People with overweight issues have a different set of body issues to deal with, for example one 17 year old girl reported: “I have suffered from feeling overweight for a few years now. Although I’m glad I don’t look ‘ill’ I often feel over looked because of this. My lung function is only 38% at best and I don’t think people notice how hard life can be because I don’t look like I’m struggling”
Bloating is common for many people with and without CF, and it can affect how people feel about their bodies.
Chronic coughs are a common thing with CF, but apart from being annoying, it can also cause embarrassment; a recent survey in the UK show 81% of respondents were embarrassed of their chronic cough. You will often have to deal with comments like “you should give up the cigarettes” and while it is easy to say, just shrug them off, it can be hard to. But remember that it’s more important to live life than spend time being self-conscious about something you ultimately can’t control. There are no simple answers other than finding a routine that helps relieve the coughing. Some people find they cough more in the morning because of the build of mucus during the night, so doing airway clearance in the morning and short episodes during the day could help.
Not a pleasant side effect to deal with, but urinary incontinence is very common in women with CF, even during childhood. It happens in men, but is not as common. Stress incontinence (the involuntary loss of urine) is caused by the pelvic floor muscles not coping the increased pressure on the abdomen, especially during coughing, sneezing or laughing fits, running, jumping and heavy lifting. But there are ways to treat it and help prevent it from happening. Check with your CF health team.
Ports and PEGs are usually discreet, but may feel like an invasive modification to your body. A port is a small device inserted under the skin to assist in frequent use of antibiotics, often used if someone has small veins or is requires frequent intravenous medications. Ask to have a say in where in your body it is placed. It might be able to be put somewhere where you can’t see it as often, which can help with body image perception. A PEG or gastronomy tube is inserted into the stomach to allow overnight feeding for weight gain. After three months the tube may be changed to a ‘button’, which looks like a small valve and is quite discreet. They take the pressure of the need to eat enough during the day.
Scars are almost inevitable for people with CF; some wear them as a badge of honour, but a UK study has found that 68% of people felt their scars affected their body image. One 24 year old said: “They don’t actually both me at all. I’m actually quite proud of my transplant scar because it’s the biggest (and best) thing that has happened to me” And one 28 year old said: “I think part of disliking the scar is because it reminds me why I needed the port – because my health is in decline and I was needing more courses of IV’s. Now I think of how much easier IVs are and the scar is a lot less intrusive and visible than I thought it would be” We all scar differently depending on age, race, genetics, general health, size, depth, location and type of injury.
Also have a look at Salty Girls, a project by photographer Ian Pettigrew who himself as CF. The aim of the project is to inspire women with CF to embrace their bodies, scars and all.
People with CF have a much higher concentration of salt in their sweat which can sometimes form crystals on the skin (more so after exercise or in hot weather). Excess sweating is not known to be directly related to CF, however many people report excessive sweating in addition to salt loss which can impact body image.
Remember that excessive sweating can indicate an underlying medical condition such as infection or diabetes, so talk to your doctor if you have ongoing bouts of excessive sweating.