Let's start at the basics. Not as many people as you think have heard of Cystic Fibrosis, so when coming to the dating world this can become a problem. Every 1-25th person carries the CF faulty gene in their body. But you will never know that unless you get tested. If every 1-25th person knew they had the CF gene then I bet many more people would bother to learn more about their genetics & what CF really is. However, for the time being this sadly is not the case, so I have to tell people about my CF myself.
When I first met my boyfriend he had admitted to knowing nothing about Cystic Fibrosis at all. A common question is "when do you tell them?". This can be a tricky one, & everyone handles it differently, but I personally approach it like I would with anybody else. Normally if we would go out for a meal & I'd place my creon on the table (pancreatic enzymes that I take whenever I eat to help with digestion), then that sparks a good conversation starter. I try & make CF sound as chill & relaxed as possible because scaring a person off, or worrying them not to ask any questions is the worst thing to do. I normally say "it is part of my daily life & I know no different, so it is normal to me". Wouldn't be the best idea in my opinion to just blab out all the treatments I do, life expectancy, hospital appointments all in one sitting. I like to talk about how my job benefits my health, how I take tablets to help with digestion, & what I want to achieve even though I have CF. So, I make it a conversation whereby the receiving person is happy to ask questions & can join in.
Let's be real, there are always the uncomfortable and extremely awkward questions, but I like having the opportunity to address them. I can't imagine being on the other side, wondering and not knowing if, or how to ask, or worse, having those very important questions go unanswered. I've been asked a range of them, too. “Are you going to die in your 30s?” “Is that why you take so many tablets?” “Oh, so that's why you cough so much.” Having a relationship with CF has always been a worry to me. I've had great responses from people, & then some not so great feelings from others. One of the most important things to me about a relationship (a friend or more) is support. I am going to need that support from someone when life isn't as exciting. Friends are out & I'm too ill to join in. However, also needing someone to give me that boost of encouragement for when I am feeling low in energy & need to finish that treatment, or get up & do some exercise. My boyfriend started learning more about my CF in September 2017, & as we got to know more & more about each other I would open up more to him about my CF life. We spoke about how I deal with it daily & how I stay well. He was open to learning, & wanting to support me as much possible. However the closer we got, the more worries he had in his mind (which is understandable), but he found it hard to ask me...Now a year and a half on he is full to the brim of knowledge about my CF journey, my current health, the medication I am on, & he can even access my portacath for me.
This blog post moves onto thoughts & feelings that he felt when meeting me (the receiving person), & understanding I had Cystic Fibrosis. The steps he took to personally letting everything sink in & not let CF push him away. The post is help anyone who may have just met someone with CF, just started dating, or unsure what they should do to support them.
Brad's Thoughts 1. Life Expectancy - Is Google true? As soon as you google Cystic Fibrosis you start to worry. Quick resolution to that...Don't google anything! Google goes off the average age expectancy globally which is concerning if you don't know the full extent of your partners health. Be open with your partner with regards to their condition & how they are, because every cf sufferer is different.
2. Hard to get into a relationship with someone with a life threatening condition You cannot let the bad thoughts of when they may be gone, effect the happiness you have together day to day while they are here. In reality the likelihood of me attending Nicole's funeral rather than she coming to mine is high. It can be a frightening thought that I do think about, but you can't let it stop me from enjoying the time I have now. So many years ahead!
3. You really start to notice that your CF partner does not take each day for granted, so you start to make the most of your days too. Jumping at all opportunities & being spontaneous. She makes me appreciate each day!
4. Cystic Fibrosis is NOT contagious If she has a chest infection, then you will not catch it. It is the weakness in her immune system which stops her body from naturally defending any infections & for them not to produce & multiply in the lungs. My body (without CF) can naturally defend these infections & therefore I am not ill when she is.
5. Shake them, & they rattle Nicole's joke when she showed me all the tablets she takes each day!
6. If they cough up a plug in the sink, they will have no shame & want to show you! When we say 'plug' we mean mucus from the lungs.. not an electrical item. It is common with having CF that they can be productive when doing physio treatments. The aim of these treatments is to open airways, & to shake up the lungs to loosen any plugs or sticky mucus which may be the cause of tightness, chest pain, wheeziness or shifting an infection.
7. Finding the right way to tell family & friends I have wanted my friends to get to know Nicole for her personality & interests, not just that she has CF. But there does come a time when you have to tell them, and also your family. For example if she is staying over & her nebulisers (pieces of equipment that are used to administer liquid medication into her lungs) are on the counter, or she takes tablets at meal times. Then they will start to ask me questions, (as well as Nicole). As mentioned in point 1, to be open with your partner & know the extent of their condition. Every CF patient is different, & to be confident in saying "she is doing really well".
8. Because CF is an invisible illness, I forget she has CF until she is really ill The one good thing about CF is that it isn't in your face 24/7. When Nicole has done her morning treatments we can head out for the day, explore, go eat, (taking creon is just seen as the norm) & all the time CF is forgotten about. Even after evening treatments, we can head to the cinema, go & see friends, eat more food (probably Nandos) & CF again isn't spoken or thought about, I forget she has it, which is great! But until Nicole is ill & needs hospitalisation then CF becomes the most important thing on your mind, the only thing you think about, & you cannot escape it.
9. Most people are scared of falling in love with someone with CF She would not be the person she is without CF. She is so positive, drive to learn, & achieve each & every single day.
- The good ones who really can handle CF & fully grasp that role are hard to find. I've also realised that even someone who can embrace the challenge of dating a person with CF will need as much support as they give you in return. It's a balancing act that not many couples can keep up with. Enjoy the times of wellness & happiness.
From Nicole & Brad
(P.S I want to say a huge thank you to my boyfriend for adding in his views, thoughts & personal fears into this post. Most importantly having the courage for me to publish this blog post. ly)
(PP.S) If you have gotten this far to the end of the post then well done! Comment below if you found this post helpful or now have a better understanding)
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