Living with something that people can’t physically see is very difficult as people who look at you will think ‘she looks fine, what is the problem?’
Sometimes I know people think I am lying, especially in past jobs where people comment ‘you were fine yesterday and now you are suddenly poorly, you just look tired’… I used to get a lot of eye rolls when I say I’m not feeling well. One employer didn’t even believe I was in hospital when I was taken unwell after a rapid change in my health because I had been in the day before and was happy and smiling, just because I look that way does not mean I am not in pain and seriously tired. My invisible illness is Cystic Fibrosis, this means I can be taken poorly suddenly, CF is unpredictable and means I am always pretty tired and I can be in pain a lot along with many other things that people can’t see.
However, people with invisible illnesses ignore symptoms and tell themselves they are totally fine because society has made us believe if you physically cannot see what is happening then no one will ever believe us, why would they when they cannot see how we feel and could never understand unless they have physically experienced it themselves. I turn to telling my fellow cfers how i feel because honestly that is the only people who will ever understand.
My tired is different to the average persons tired, so when you tell someone you are knackered the response you will probably receive is ‘same’ which is frustrating!
Having an invisible illness has affected my anxiety, it honesty blows it through the roof knowing no one gets it and most of the time no one really believes you.
My pain isn’t the same as a headache that a paracetamol will fix but with pain, unless you can see blood everywhere or a dislocated joint it’s not taken seriously in everyday life.
Living with something people can’t see is one of the most frustrating things to live with, even more frustrating than the actual illness itself sometimes.
Sometimes, I want to sleep for days but because you cant see how I feel and how my body works overtime I get labelled lazy and no fun.
Sometimes, I want to hide away from the world because I feel genuinely alone and judged.
I don’t know what it is like to feel ‘normal’ just like most people don’t know what it’s like the be ‘different’
Take the time to listen to what people with an invisible illness are telling you and how they feel, because it’s super hard to talk about without feeling judged, being questioned and being disbelieved.
Imagine shouting something from the rooftop you had to deal with but no one quiet understood and you can’t even show them or compare it to something they may know.
CF is like having a hangover and the flu, constantly… just without the stale booze scent.
It still doesn’t make total sense in your head right? It’s not right and like ‘oh yeah suuuuure’
Imagine having the flu and no one believed you so you HAD to continue your day like normal and not rest? How frustrating is that? You just would not want to do it at all.
That’s mine and many others daily struggles.
I used to not talk about it at all because if the fear of people not believing me and people not inviting me out anymore or not wanting me around them because they just didn’t understand.
That is such a lonely feeling, make everyone around you feel welcomed and let them know you’re willing to learn and listen.
If someone has an invisible illness, chances are they barely talk about it so if they do , it’s kind of a big deal.
It’s like that saying don’t judge a book by its cover.
If you suffer with an invisible illness, please never feel disbelieved and don’t ever feel upset or stressed about it – explain to work, your friends and your family your frustrations and ask them to ask you any questions, don’t feel shut out and like it’s pointless because your health needs to be understood. If the person you are explaining it to isn’t willing to listen or give you what you need then it’s THEIR problem, they are ignorant. It is not your fault.
It’s okay not to be okay, it’s okay to help others and it’s okay to talk about what is going on.
Most invisible illnesses come as a package of serious pain, tiredness, sickness & plenty more! So don’t question if someone is lying or make a comment that may hurt them because it’s already stressful enough.
Mental health is also invisible as well, so LISTEN and BE THERE for people.
I have learnt to cope with any negative comments people may have or people upsetting me by cancelling what they say out with a positive thought and also telling myself ‘it’s okay, they just don’t quiet understand yet! the important people in my life understand and are there for me, there is’t enough space in my life for ignorant people’
Always remember your health comes before ANYTHING. DO NOT PRESSURE YOURSELF TO STRESS OVER ANYTHING OR ANYONE especially those who do not listen.
TALK ABOUT IT!
It helps and you feel better when you talk about it to the right people.
Remember, empower each other always, support everyone in your life and help them talk openly about things, don’t be one of the people that ignored it so people talking openly hide away from talking about it.
You never know what anyone is truly going through, it’s free to be kind.
I hope this blog post has helped people understand and helped others cope, my inbox on insta/email is always open for listening and helping no matter who you may be!
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