Living with an invisible condition: Siobhan’s story
People don’t see what is really going on behind the scenes when it comes to living with an invisible illness. They can’t see the silent and hidden reality that we live in.
Nor do they see our silent struggles, even when we are out and about, because we have mastered the art of hiding our condition.
For example, struggling to get our breath back after just walking a few paces, taking our insulin at restaurants or cafes, coughing and clearing our lungs, and taking our medications.
There are many misconceptions about what CF is really like.
But the biggest misconception about CF is that you very often look physically healthy and ‘well’ on the outside, when in reality our lungs are screaming at us from the inside because they are continuously fighting hard to keep us breathing.
Thick, sticky mucus is consistently building up in our lungs and airways, causing chronic lung infections that lead to extended hospital admissions, and this often surprises people.
A lot of people tend to believe that you go into hospital for a couple of days and you are out in no time – but not with CF.
For many of us, an admission will usually last up to 14 days - maybe longer if we are very unwell.
Hospital stays consist of intensive physiotherapy, aggressive forms of intravenous antibiotics to kill off the infection, and dreadful side effects that go hand in hand with the antibiotics, including sickness, nausea, headaches, and feeling groggy and fatigued.
We may also need oxygen intervention to help our lungs recover and breathe, cardiovascular fitness to open the airways in our lungs, many discussions about diet and weight, as well as multidisciplinary team meetings discussing the next steps of our treatment.
The biggest misconception about CF is that you very often look physically healthy and ‘well’ on the outside, when in reality our lungs are screaming at us from the inside because they are continuously fighting hard to keep us breathing.
Siobhan
The one thing I wish people knew about CF is that there is a real human being with a life, emotions and a personality behind our disability.
One prime example that sticks out is when I had a job interview. I was certain it was going well, and I felt confident.
However, the minute I mentioned I had CF, the whole tone, attitude, and atmosphere of the interview changed and believe it or not, the interviewer never had the decency to get back to me!
It left me feeling devastated, embarrassed, unworthy and incapable.
Nothing was stopping me from being able to do that job, just like anyone else. Still, because I was upfront and honest about having a disability, they immediately wrote me off. They couldn’t see past my disability and decided I would be a liability, a burden and a problem.
I see it every day, and it’s so mind-boggling; I know that I am so much more than my CF: I am strong, resilient, and capable!
But people think you’re weak, delicate, unstable and fragile.
People think they have to be sensitive and careful around us, careful in what they say, and they feel that they have to protect us and wrap us up in cotton wool.
If people are worried, they should have an open conversation with us to ask questions and discuss any fears or anxieties they may have instead of making an assumption or judgement.
When it comes to having open conversations about CF, honesty is the best policy.
Try to eloquently explain what CF is. I usually say, “Cystic fibrosis is a genetic condition that affects the lungs and digestive system, causing thick, sticky mucus to build up in the lungs, airways and stomach lining.”
Then I would open the floor to any questions because this way, you can explain what CF is without having to get into any personal or specific details, especially if you are not quite ready to open up about your personal experiences of CF.
Remember, you know CF better than anyone. You’ve got this!
I would advise young people with CF to remember that their disability does not define them.
Your CF is your superpower. It’s what makes you rare. It’s what makes you unique and strong! So don’t let anyone tell you that you can’t do something.
Every single one of us that lives with CF has continued to consistently prove people wrong. We are all in this fight together.
If I could go back to give my younger self some advice, I would tell her to have more confidence and not be so afraid. I would tell her that she is not a burden.
I would tell her not to let other people’s doubts get into her head. You only live once, so enjoy the ride and don’t let depression put you in a cave of darkness and make you believe that life is not worth living.
Love yourself and be kind to yourself. You are going to be a shining star and achieve so much. And don’t forget to breathe; I love you.
Something that I wish I had known when I was younger is that miracles will happen: healthcare, education, awareness and advanced treatments are on the horizon.
When I was a child, no one knew or understood much about CF. New medicines and a cure seemed impossible.
But now, I have every hope that we will get that cure someday soon.
Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. Over 10,800 people in the UK are living with cystic fibrosis (CF), but the condition is still widely misunderstood.
Cystic fibrosis is an invisible condition, you can’t see what it does to the body. But it’s not invisible to the thousands of people whose lives are dominated by it every single day.
You’ll never see the hours of coughing, the mountain of pills or the trips to the hospital. You’ll just see a person with an invisible condition, trying to live a life unlimited.
The challenge of living with CF is invisible. Except to the ones who live it.
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