A Girl's Guide to Chronic Illness pt.2 - A pamphlet on chronic illness

Hi, I hope you guys had a lovely Christmas/festive period and you could put any battles your facing to the side to have a little bit of joy. I'm sorry for being inconsistent, and for planning to write blogs and never actually ending up writing them. I’ve had a bit of blip and felt just rather sh** (that word was totally shot, not any possible curse words your minds led to ;) ) It’s always hard to write about things when you’re just focused on trying to get through each day. However. I'm back and still very grateful for all your support.

When you're diagnosed with an illness, you're given pamphlets of what your illness consists of, how to deal with your symptoms and blah blah blah, and then you scour the internet to read up on your disease and the same information is regurgitated to a more 21st-century source of information. But whilst there is a lot of information about the illness' symptoms and its rather strict do's and don'ts, it somewhat lacks what it's really like to live with it, so others (family, friends, any human beings) are in this bliss of ignorance and are unaware of what people deal with on a day to day basis, and perhaps even the sufferer doesn't quite know what it will entail. Illness is unpredictable and leaflets forget to mention that, slight, detail. There’s actually quite a lot leaflets often miss out, like the parts where you'll have to face discrimination, or the parts when you can't go out and be a normal teenager, or the parts where you have to watch everybody else do the one thing you can’t, the leaflets forget about the person and their life. I feel like the most suitable candidate for writing the brochures that describe your future, should be someone that actually goes through it, rather than someone who has no idea and is just reciting what they’re told to write. I often, desperately search the internet hoping to find an article or a blog post about life and illness, hoping for something that is real and funny, or something that is brave, inspiring or something normal, whatever that means. I never find something I could connect with. Because, I so desperately wanted a real thing written about illness, I decided to write about it myself.

There is this taboo, where people feel they have to tiptoe around illness to try to seem polite, it's this strange etiquette where it makes people feel like they can't talk about illness or disease, it almost makes it seem as if it is something shameful or offensive. People often see the medical equipment facade and then end up blending the illness and the person into this odd concoction, where they either just pretend that your illness doesn't exist, or they forget that there is still a person behind the symptoms. This fear often stops people from asking the questions that perhaps the sufferer wants people to know, but doesn't know quite how to tell people. When you see someone with a disability, rather than staring at them and making them feel like this circus act, dare I say it, talk to them, talk to them as you would anyone else. If the topic of illness comes up or they seem open and honest, talk about it with them (judge the situation as you don't want to prod into something personal or private to them).

The worst part about disability is that people see it before they see you. Illness doesn't change the people they are, so see them as who they are, but understand a part of them is their illness. Imagine people are cakes (weird I know, but just stick with it), you have the sponge and you have the jam, yes they're both parts of the cake but they're also different elements. Take me, for example, the jam is my illness, the sponge is my personality, my strong strong love for one direction, my goals, my love for books and my dream to be Taylor Swift (Queen), the cake as a whole, that's what makes me, me. I'm not just separate elements I'm a cake with jam, icing and sprinkles. I'm proud of my jam, my cake layer and everything else I am, but I wish others would perhaps know more about illness and life, together, because you don't just have illness, and you don't just have life on their own.

So what I've done I asked people on Snapchat to ask questions that they want to know about the two topics, just so I could answer them, for people to have a bit more of an insight.I do want to stress that everyone is different and the things that might work for me might not work for other people, so please always be sensitive and considerate. Ps. illness isn't something to be ashamed of. I used to be ashamed of my illness until I realised, it doesn't have to define me or make my life something that I don't want to live, I want to live a life I want to live, regardless of my disability.

(I've had so many more amazing questions, so if you've enjoyed this post I'll do a part 2 Q&A with all the other questions. Thank you to everyone who did send in some questions, and if you have any questions you'd like to ask please feel free to ask in the comment box below)

Are Jaffa cakes, cakes or biscuits?

Biscuits and the answer is final.

What is dating like with a Chronic illness and how do you tell the person you are seeing about your illness?

I'd love to say that my illness has very little impact on my dating life, but on dates I often find that my illness quickly comes up in topic of conversation as people will naturally ask why I can't eat foods on dates, or why I have to cancel when I can't get out of bed or why I can't walk far distances, or why I have the most annoying beeping thing that always interrupts, the moment.

I think when to have the conversation about your illness is when you're ready. You don't ever have to tell them what they're going to be getting into, because dating you isn't something you "get into", dating with a chronic illness is just like normal dating, with the occasional twist to accommodate your illness. When you're ready for the conversation just tell them about your limitations of your disease, be honest and open about it. I know how vulnerable it is to talk about something so personal, with this impending fear that they won't like you back or they will run away because of it, but any decent person will like you, for who YOU are, they wouldn't let your illness stop them from loving you. I just want to say I am no pro at this conversation, in fact I'm probably the worst at talking about my illness to people in fear they wouldn't get it and then they'd end up leaving, this was like it with not only potential lovers but friends too. I was scared of being a burden to them. I realised, I used the past tense a lot there, as if I'm still not scared of that, but I am and there will be a part of me that will always be scared of not being loved for being different. I felt like I was closeted by the secret of my illness and when I finally would tell people it was almost as if I had to "come out".

I know the tubes, the scars, the wheelchairs, adds this insecurity when dating, however it's important to remember everyone is insecure about something; people may be insecure about their freckles or that their winged eyeliner is uneven. Opening up about illness in itself is vulnerable, let alone opening up to insecurities, but your scars, your tubes and everything else that comes with your disease isn't something to be ashamed of, just like receding hairlines aren't or one foot longer than the other. We're human. Everyone, is scared when they find someone new, they overthink how they're gonna play the first kiss, how to ask them out on a date or if they look okay; the fear we feel, that insecurity, is what makes dating electrifying.

YOUR ILLNESS DOESN'T MAKE YOU UNLOVABLE, it doesn't make you someone that will grow old unloved, it doesn't mean you will never be loved deeply or widely. It's simple, you don't have to pray that someone will like you and will be willing to put up with your illness, you don't have to avoid talking about it, you don't have to warn people, and you certainly don't have to stay away from people. I think people assume that dating with an illness is going to be different and near impossible, but the truth is, dating with an illness is 100% completely normal. You can still dress up, and go to weird wacky places or do something fun. Don't focus on the things your illness stops you from doing, but rather focus on the things you can do.

What I've written above, could also very much be used when you make new friends or current ones, and if your friends leave you, then let me say they sure as hell don't deserve to know you.

Do you get annoyed with people always asking what's wrong?

Personally for me I don't mind people asking, I know when people see medical equipment it's inevitable people are going to be thinking what's wrong, I often find myself double-taking too. Humans are curious and humans ask questions, I use it as an opportunity to spread awareness about my condition. As I've said before I'd much rather someone politely ask me about it, than stare or whisper and make me feel alienated. Don't get me wrong, there are days where I wish I could go out and pretend I’m normal and have no one ask all the questions, there are also days when I feel so low about my illness and I'm scared I'll cry when talking about it. It is so scary openly talking about illness to others, especially with the surrounding stigma, it's hard when it feels like people belittle what's wrong or perhaps give some unsolicited advice. There's often been times where I've not fully described my illness or I understated it, just because it's hard to explain something that you don't even fully understand, but also it's birthed from the shame I once felt.

I feel like awareness is key. If you are someone who knows someone with a disability, just listen to what they say, maybe research what the illness is, understand the highs and lows this person has to go through and how you can help. Don't be ignorant, don't act like you have a medical degree from Google, just be there for them as a person. Be there when they're crying over a boy, or when they're screaming loudly at a concert, or when you're both watching funny cat videos; there's more to life than illness.

What can your friends do to help make your life a bit easier with chronic illness?

When you first get diagnosed with an illness it turns your entire world upside down, and it is the most loneliest thing I've ever had to go through. It feels like no one in the world knows how you're feeling, and it feels like your life might aswell be over. When we're diagnosed we often try and wrestle our new symptoms, whilst starting medications with the not so glamorous side effects, we have to change our entire world, whilst trying to cope with the overwhelming emotion of our new life.

Not to be cringe here, but laughter is honestly the best medicine. You won't be able to take the pain away or you won't be able to relate to them or find a magic cure, but you can be there for them. It's often hard to know what to say, or what to do, but the best thing you can do, is hold there hand whilst they go to hell and back, or just lay in bed with them watching movies all day. I know it feels like there should be more that you need to be doing but honestly the social support, helps us in more ways that you could ever think of. Illness is so isolating and lonely, and you lose friends because of it, so try and be patient when your friend has to cancel plans, or be flexible what you do together. Being there for them, might just be their reason to get out of bed in the morning.

I want to do a whole post about this in more depth one time.