“But you don’t look sick,” is a sentence so many people living with an invisible illness will often hear when discussing their health. It is something I hear all the time.
Having cystic fibrosis (CF) is time consuming, exhausting and life limiting. Unfortunately, not everyone knows what CF is, and because people with CF don’t always look “ill”, having the condition can make you feel very invisible.
It is hard to constantly stay positive and upbeat even when you have your bad days. Some mornings I will wake up with a really tight chest, lung pains or even shooting pains around my ribs. I cry, do some medication and deal with it for the day.
There is no fishing for pity or help, because no one knows, no one can see, unless you open up and tell someone.
To celebrate;National Invisible disabilities weekI have put together a list of 8 tricky situations, common phrases I hear, and some of top struggles having an invisible illness can give you.
1. Who to tell, and who not to tell?
It is always a grey area to when it's best to open up about having CF to the relevant people.
The main one is when people, colleagues, friends of friends hear my cough and say "oh you've got a bit of a chesty cough there, have you got a cold?" Most of the time my answer "ah its nothing". But what I really want to say is "I have CF, currently have a chest infection that you will not catch. My immune system is pathetic and I have caught a bug that your body will naturally defend. I am on antibiotics for it. I'm fine".
Another one is when I go to spas, gyms, outdoor activity centres, and I get given the questionnaire to fill out, I always double take whether it is important to state my illness, do they really need to know? When is it important to tell them? Will my CF really effect?
I once wrote in a health club questionnaire that I had CF. The spa therapist then told me I will not be allowed to receive any treatments today, massages, facials, stone massages, only polish for my nails. I was there with a friend on a birthday retreat and was gutted I could not enjoy the weekend as planned. They totally over exaggerated because their spa manager, and hotel manager didn't know about the condition, and didn't know the treatments wouldn't give me any harm.
This brings me on to...
2. Frustration at the lack of understanding
It is very hard to explain what CF is in one sentence. "It is a genetic illness which affects my lungs, digestive system & immune system", but even then I have missed so much out.
Then I usually get "It is like asthma right?" which it isn't. People with CF can have asthma also. CF is a condition that clogs my lungs with sticky mucus and makes it really hard to breathe. This can cause infections and be really hard to get rid of.
Students vaguely learn about CF in biology in the UK when they are at school, but not everyone remembers the details. Awareness is a huge way to keep people talking about CF and understanding the condition.
3. Everyday is different to the next
Not knowing how you feel day to day is hard when you have exciting plans ahead. Having CF can be very unpredictable, and catching a chest infection can wipe you out for days.
Being careful with your health and never pushing yourself too far is very important, also known as, 'not burning the candle at both ends'. From an outsider this may make you look boring for missing out on events, nights out and parties, but in actual fact you have to miss out to make sure you stay well.
4. When is it right to give in & admit you're feeling sick when you look perfectly ok
If you know me, you know I am a very determined, sometimes stubborn and hard working person. I never want to give in and say I am unwell, or that I need to leave the room. Many years ago when I was at school I was given a medical card which excused me from leaving the classroom if I felt I was having a hypo, (blood sugar low from my diabetes), if I was coughing a lot, or needed to take my inhaler. Many people in my class didn't even know I had CF, and I felt it like a 'sore thumb' leaving the room, everyone would look at me or ask where I was going.
When admitting I am seriously unwell, sucks! Accepting I need to go into hospital for 2-3 weeks on IV antibiotics, feel even more ill before I get better, & miss out on even more fun with friends and family. I hate giving in, but sometimes you have to, to make sure my long term health is the best it can be.
5. It can be isolating when you cannot mix with other people with your condition
Due to cross-infection people with cystic fibrosis cannot meet, mix socially, or work in the same place. The only way we communicate and share our journeys is via social media, so before the internet it was even more isolating to relate to someone else with your condition.
So not only is your illness invisible, but you cannot meet someone else face to face to support one another. A lot of news and articles online are negative, which is why we use private platforms to chat more openly and honest about what we go through, encouraging each other through our hard times. It is a place where everyone understands.
6. Keeping energy levels high when you feel so low
Especially with my current job role (fitness instructor) my energy levels must be high all the time. Up beat in all my classes, focused and hard working.
When I am feeling extra run down, tired or my chest feels like it has candy floss in it, it can be a challenge to cover it up & keep going, knowing you'll be ok in 2 days.
7. No one tells you about the multiple hospital and pharmacy visits each month
Not all these visits are counted, seen or even acknowledged for. Sometimes I can come out crying with bad results, and other times come out beaming with joy because I have finally hit a new lung function percentage. My local pharmacy ladies know me so well as I am such a regular! In some way this is nice, but also funny when I walk out of there each month with two bags of medication!
8. What you don't see is the amount of organisation I takes to keep well each day
Having CF doesn't just stop there, we all take a lot of daily medication to stay at a constant level of good health. Around 30 tablets a day, broken into enzymes, vitamins, supplements and more. 2-3 nebulisers, inhalers & physio therapy for our lungs. This can all take up to 2 hours each day when you add in the cleaning, maintenance and care of the equipment.
Every 2nd Sunday I organise all my tablets into daily containers so it makes each morning easier to get ready. I pre-mix my nebuliser bottles each week, and making sure I am counting my own 'pharmacy' at home so I can get any prescriptions into the local pharmacy or hospital when I need more.
Some may say it is a "daily battle to stay well", I say "it's my life".
Thank you to everyone who has got this far into my blog post. I really hope you found it useful, an opener and maybe you now understand how a friend, or family feels each day, living with an invisible illness.
See you next Saturday for another post,
Nicole
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