7 things teenagers with a Chronic Illness don't want to hear

1. "You look so well!" or "You must be feeling better then!" We have to remember that this is usually intended as a compliment. Sometimes we will imagine a comment like this to mean 'I don't think you were really feeling that ill in the first place'. Just because we are out, smiling, laughing, or keeping busy, does not mean we feel good. It can be a little frustrating not showing on the outside how rubbish you feel on the inside.

2. "Oh my god you're eating McDonalds for the third time this week? Don't you worry about what you're putting into your body?" Or alternatively, "Oh my god you barely eat, you need a burger" Possibly well intended comments on eating and weight, unless coming from a parent or medical professional, will usually be dismissed. Regardless of whether the person is ill or not, a remark on someone's weight is unnecessary and can cause more harm than good. 

3. "Your symptoms are in your head.. it's all caused by stress, you just need to exercise more and see a therapist." Believe it or not, some doctors will actually say this to you. And there's nothing worse than constant pain not being believed.

4. "Oh! My great aunts nieces cousins sister had that, she went on a detox diet/threw out her microwave/moved to the countryside and she instantly went into remission!" Thankyou. But believe me, if there was an alternative therapy to brain surgeries, constant medication, and hospital appointments, we would do that. We have tried every 'cure', treatment and therapy available. Three times.

5. "Pleeeease please come to this concert/party/big social event, you can't just hide in your room forever." It's wonderful that you thought of me and want me to be involved, and I wish more than anything that I could go out and enjoy it with you. But it's hard enough for me to listen to my body and not overdo it as it is, I physically cannot go out, as much as I would love to be social. Trust me, I am the only one who knows how I am feeling.

6. "I could never take that many pills... relying on them is so bad for you. Don't you worry they'll change you? And you'll get addicted?" We need pain relief and medication in order to function. Daily pills keep us out of comas, prevent migraines, stop nausea, lower our heartrate and relieve pain along with a million other things. If we didn't take them all, we would see a serious and probably scary decline in our health.

7. "I wish I was able to lay in bed, watch TV and relax all day".  Life with a chronic illness isn't like one long sick day. It's okay when you have a bad cold and are off work for one day and spend it comfortably curled up watching movies or going out on some ferris bueller's day off type adventure. But the reality is, we often spend our days forcing ourselves to do things and attempting to function somewhat normally, even the minute task of showering is completely overwhelming sometimes. We find hobbies to fill the time, but we can't always enjoy them, simply because we're just so uncomfortable. See my day in the life post to see what an average day with chronic pain is like.

I want my blog to be an educational informative place, I am not 'getting at' anyone or trying to make others feel like they're walking on eggshells when talking to people with chronic pain. If we don't talk, people won't understand. 
To the chronically ill community, is there anything else people say to you that you wish they didnt?Let me know in the comments below. 

10 things I wish you knew about my chronic illness.

1. I take approximately 24 tablets daily. This does not mean I am an addict. When you rely so heavily on medication, your mindset inadvertently changes. For example, an otherwise healthy person would think 'I have an awful headache... I'll take some painkillers and get rid of it." For a chronically ill person, it becomes, "I'm in pain, I'm always in pain, but am I in enough pain to warrant taking painkillers? How many tablets do I have left for the rest of the week in case it doesn't work and I waste it? What pain score am I at, and what corresponding strength of tablet/combination of tablets do I need?

2. Pain can make me incredibly moody. When it gets to the point that I cannot function or stand upright at all, I get snappy at everyone. It's because I'm frustrated with myself. There are many times where I need to lay in a quiet dark room by myself until the headache eases. To my patient family who put up with this, thankyou.

3. The hardest thing to accept about my reality is the fact I can't go out and be the busy social butterfly I desperately want to be. It's incredibly frustrating, and I feel so guilty every time I have to let people down and cancel plans yet again because I can't leave the house. I have to constantly remind myself that I'm not the unreliable one, my health is.

4. People think it's a luxury to be able to lay in bed and watch netflix all day everyday. Of course it is, I'm very lucky to have the resources available so I don't have to force myself to work everyday just so I can afford food or a roof over my head. But believe me, after 5 years, the novelty of not being able to leave your room quickly wears off.

5. Being in hospital is exhausting. Not just physically, but emotionally too. You're constantly fighting. Fighting for medication, for appointments, for someone to take you seriously.

6. The most powerful thing you can say to anybody with a chronic illness is 'I believe you'. Living with an invisible condition means there are usually no outwards signs of pain. It's so easy to put on a face of makeup, dose up on strong painkillers and say 'I'm fine!' Nobody wants to be that person constantly going on about how awful they feel. But sometimes it is nice for someone to acknowledge the pain we are actually in.

7. I would never have taken up art if my health had not deteriorated. I have found so much more joy and self satisfaction, from a hobby I would never have had the time or drive to pursue otherwise. I'm incredibly lucky that I have had the opportunity to cultivate this skill and begin my journey to being the next Van Gogh.

8. It was really hard to give up my independence. I am unable to drive, move out, work, go to university, and there are also days I need help to get dressed, to get to the bathroom and can't get around without someone pushing me in my wheelchair. It's a daily battle being honest with myself and putting my pride aside. It's hard to remember that people are more than willing to help, I just need to ask. Swallowing my stubbornness and being honest with myself is a lesson I'm still learning.

9. Giving up a passion because you can't physically do it anymore is heartbreaking. I miss acting. I miss being on that stage, I miss the community of close friends I used to have. I miss all the days and nights spent rehearsing, being fully immersed in theatre life. But I know there will be plenty of other ways I can get involved in the future. Maybe I need to find a role where I can just lay in bed and be still the whole time. Betty Parris reprise anyone?

10. The best piece of advice I have ever received was from my Mum. 'When life gives you every reason to be unhappy and miserable, show the world that you can deal with it. Make people wonder how you're still smiling.' Now this doesn't mean you have to fake being Pollyanna happy 24/7. It is healthy to feel negative feelings, but what's not healthy is allowing it to take over your life.

A day in the life with a Chronic Illness

Disclamer - I am not looking for sympathy, and I am in no way saying 'look how awful my life is'. This is just an accurate representation of what an average day is like for me. I am in no way saying this is how everyone with any chronic illness feels, as every individual has a different experience. Some days are much better than this and some days are a lot, lot worse. Every day, every hour is different. To read more about my official diagnosis, check out my About Me page.

9-10am. You wake up feeling like you've been out drinking and partying all night. But you didn't even leave the house yesterday, and you've not had a sip of alcohol for months. Your head's pounding and you know you need water and painkillers, but you feel like your brain is going to explode if you even contemplate sitting up. But you force yourself to. If you go back to sleep and lay in too long, you'll just feel even worse.

You decide not to take strong painkillers. The thoughts of "addiction" and dependency enter your head, and there's a chance they might stop working so well if you take them too often. So you go without. But it puts you in a bad mood and you still have to take 8 other tablets anyway. 

Getting out of bed instantly sends your head spinning. You feel like all the bloods draining from your head. You can feel your pulse skyrocketing and if you try to walk, the room suddenly spins from underneath you and you grab onto the wall to stop from falling over. 

You feel too sick to eat, but you know you need food to line your stomach. You go downstairs and start making breakfast. Sitting down at the table, you feel an instant relief. You begin to eat even though every bite makes you feel more and more nauseous. You feel like you've already eaten ten meals this morning. Bending down to put it in the the dishwasher sends your head pounding, and you can barely hold a conversation with anyone. 

Washing is exhausting. As you walk past the bathroom you notice a bath already run. Thank god. You can sit down for a bit in it. At least there's ten/twenty minutes of relief. You contemplate sitting on the toilet seat whilst you brush your teeth so you don't have to stand.

Putting clothes on makes you feel dizzy. No makeup. And hair goes in a ponytail. There's no point forcing yourself to pick a fancy outfit and wasting makeup and spending an hour standing and doing your hair. Save that for when you're actually going somewhere. You're already exhausted.

11-12pm. You need a rest after this mornings activity. You sit on your bed and lay still for a while, and after a minute you finally feel your heart rate begin to slow. You watch some youtube videos, and start to plan your day. On a good day, you could be going to class, or going out for a little bit of shopping or lunch, but you know any plans for the day are out the window. Theres so much you could be doing, but you're not up to standing right now, never mind leaving the house.

You have to remember to focus on the things you can do. You try to reassure yourself it's okay to rest when you need to. 

1-2pm. You should probably have something else to eat. You psych yourself up again, and make your way back downstairs. You pick out some carby plain stuff, nothing that requires much preparation. You've figured out all sorts of tips and tricks to help save energy and stop you feeling worse than you already do. You then do a few chores, emptying the dishwasher, cleaning the bathroom, tidying your room. You zone off into your own little world.

You go back up to lay on your bed. You read for a bit, you plan a blogpost, you plan some art in your sketchbook. Your pain levels have gone up. Your art stuff sits on your desk, but you won't be up to painting unless you get some strong painkillers in you. It plays on your mind - do you just lay still and go without, or do you take them and attempt to do something? Finally, you give in. You know you'll feel a bit better once they're in your system anyway.

  

3pm. You have a good couple of hours. The pain subsides a little, the brain fog lifts and you manage to get an hour and a half of painting in. It brightens your mood considerably. With a bit more motivation you go downstairs. You lay on the sofa with your dog and read for a bit. You sometimes have dinner up in bed if you really feel rubbish, but you can manage sitting at the table for a bit today. Also, going up and down the stairs too many times will set your heart racing and will bring your headache back to that unbearable level again. You're cold, of course you forgot to bring a jumper down, and your body is terrible at regulating your temperature. 

7-8pm. You finally get ready for bed. Showering and brushing your teeth sends the pain levels up again, and the medication is already wearing off. You can't wait to get under the covers, warm up, take another 8 tablets, and watch some TV without having to move again. The absolute relief you feel as you lay flat again is wonderful. You feel like you've run a marathon as your body is throbbing and aching. But technically, you had a good day. 

And tomorrow, it starts all over again.