My Most Frequently Asked Questions: CF Edition

For anyone with a disability or chronic illness, there's no doubt that you have been questioned about your chronic illness and/or disabilities. Weirdly, it's sort of understandable. People are inquisitive and curious. Or downright nosy. Well, whatever it is, people just want to find out more information about your condition. Some are genuinely curious and want to learn more about your disability. Some show curiosity for the wrong reasons, i.e. if you don't "look" disabled (this is called having an invisible disability, like I do).

Having Cystic Fibrosis has meant I have asked a lot of questions for myself since I was able to talk. From my friends and teachers in primary and high school to my current friendship group, to my work colleagues and even my family, I've had a few questions thrown my way. 

Read my post on my CF Q&A from my followers here

Some questions have been rather unique, and I felt compelled and eager to answer. Some have invited me to say "WTF?" and allow my face to look like a meme. 

The fact is, however unique or insensitive the question may be, I am always willing to answer. I've always said that I'd rather people ask me questions than make the wrong assumptions. Making the wrong assumptions about someone's illness or disability is ignorant and can be morally dangerous. I'd hate it if anyone spread misinformation online or to others in person about an illness which they have little to no knowledge of. 

The questions I am about to list have either been asked of me on numerous occasions or ones I have had a WTF moment over. You can probably guess which is which as I go on writing this.

Here are my most frequently asked questions about Cystic Fibrosis:

1) Are you in pain all of the time? 

Completely harmless and normal question to ask. I get pain from CF, mainly back pain, as I have thinning of the bone in my lumbar spine. Having blood taken hurts a little sometimes, but CF as an illness doesn't cause me chronic pain.

2) What's it like having CF? 

I always struggle to answer this one as it's the equivalent of me asking someone, "What's it like to be healthy?". Having Cystic Fibrosis is my normal, I've never known any different, as I was born with the condition. Being healthy is your normal. I can't describe what it's like having CF as I can't compare it to being healthy. 

3) Why aren't you used to needles by now? 

This question always grinds my gears. You NEVER get used to needles. They're painful, cause bruises and are just unnecessary. 

4) What's hospital food like? 

I've been fortunate enough not to have had many bad experiences with hospital food. 80-90% of the time, it's pretty good. I make sure I eat like a Queen when I'm an in-patient. Bringing snacks from home is also key.

5) Is CF just like asthma? 

Oh, this one drives me mad. However, I can see why people have made the connection between Cystic Fibrosis and asthma, as they're both conditions related to breathing. But CF is not like asthma, as CF affects more than just the lungs. 

6) Is CF hereditary? 

Again, this is just because of little knowledge of the condition. CF is kind of hereditary. It's an inherited condition. If you have a relative who has CF, there could be a chance you could be a carrier. This doesn't automatically mean your child will have CF. Your partner would need to be a carrier, too. If both you and your partner are carriers, your baby has a 1 in 4 chance of having Cystic Fibrosis when it's born. Read more info on that here.

7) Do you just lie on a bed in the hospital all day? 

Listen, I don't like being in hospital, who does?! But when I'm in hospital, I have to work twice as hard to get myself well again. I go to the hospital gym to keep my strength up, I have physiotherapy, and I'm back and forth to the radiology department. I'm certainly kept on my toes while I'm in hospital, believe me!

8) It's the disease with the lungs, isn't it? 

To be fair, people who ask this aren't totally wrong. I just have to explain that it affects the sinuses, digestive system, liver, bones, pancreas...

9) What's your life expectancy? 

A question I can't give a definite answer to. Unless I change career paths and become a psychic, I'm never going to know. Life expectancy for people with CF changes every year. Children born with CF today will stand to live a reasonably normal life. When I was born in 1993, the life expectancy for children born with CF was 18 years. Here I am, 31 and 13 years past my supposed expiration date. Luckily, I don't smell gone off! But that's what I mean, medications and treatments have advanced so much over the last 30 years, especially since the introduction of Kaftrio (a modulator that helps fix the defect in a CF person's DNA).

10) Why are you parked in that disabled space?

Getting asked this in public is highly unnecessary. The amount of filthy looks I've gotten because I've parked in a disabled space is frustrating and quite sad. I try not to use a disabled space if I can help it as I hate the dirty looks I receive when I pull up in a yellow space. I have a disability badge which was issued to me by my local council, and I have provided the proof that I need it. So why do people still choose to question me beggar's belief? This is where ignorance comes into play. Just because I'm not in a wheelchair or an amputee, it doesn't mean I'm not disabled. Some often forget that some disabilities are not visible. There is a certain age category that is the worst, but I won't mention the age range, but you can probably guess!

11) Is it contagious?

Yes mate, cause I'm happy to leave the house and spread my illness all around to others. Honestly - it's surprising how many times I've been asked this.

If anyone has any questions, please don't hesitate to ask! I wouldn't want this post to hinder you from doing that!