This week I wanted to highlight the stresses associated with living with a chronic, invisible illness. Not only does this present many challenges on our bodies but can also play a major part in impacting mental health.
The nature of CF means its a progressive illness so there is never any point in which we can really say we are ‘getting better’ as that contradicts the illness itself. This can definetly be something many people forget and can be tiring as we feel we have to prove we are actually ill to others. This is also true as the illness is invisible meaning that most the time people with CF appear to look healthy, this is frustrating because inside we are struggling to breathe or suffering from immense pain but on the outside we look ‘normal’. Having to prove the severity of an illness is such an awful thing to have to do because we are suffering enough without having to constantly having to defend ourselves.
Life expectancy is a huge issue around CF and something that is at the back of our minds all the time. Currently the age is at 45 but obviously varies for each person depending on the severity of their CF. Knowing that our lives will be shorter due to this illness can be scary, personally it has changed my outlook on life as I try to think about the present rather than worrying about the future. Its taught me to try and do more things that make me happy in the moment and rather than worrying about a job in the future and what my life may be like, I have always been encouraged by my family to focus on now.
This topic is obviously massive and one that will impact people in many different ways, its not something I personally dwell on much as I think it could also hold me back if I was to constantly worry about it. Its just given me a reality check on the way I see things.
Another factor that plays a part in impacting my mental health is how my CF effects those around me. I can personally deal with admissions and bad news without getting too worried but I know my family and friends get upset about what I have to go through. This is one of the worst parts of the illness as there is nothing I can do to control it. I wish that the illness only impacted me but its so hard seeing those I love become affected by it. This means that when I’m unwell I often won’t say anything to them and feel guilty when they help me.
I would strongly advise those with CF to speak to a psychologist; most CF centres will offer a free service. I speak to someone weekly and knowing I have that extra support is so reassuring.
There will be many other parts of CF that impact peoples mental health as well as my own but these are the three main points I wanted to share. I hope that opening up about my own feelings will help others with CF know they are not alone, while also highlighting the complexity of this illness some more.
Thanks for reading 🙂