Living with invisible illness

As the bus pulled up I suspected this was going to be an uncomfortable ride. There were plenty of people at the stop, cards ready to tap on, and already things were looking pretty full in there. It was only about a 15 minute ride so definitely achievable but I wasn't feeling too excited about it. We all climbed on and juggled our way down the aisle finding a suitable place to stop. I strategically placed myself next to a pole and leant my whole body against it. Looking longingly at the courtesy seats full of seemingly healthy people I thought to myself "shit, I wish I looked sicker".

It's a weird thought to have. I spend so much of my life doing everything to avoid looking sick and here I am thinking "if I looked like a cancer patient in the films, you know the ones who are completely bald, with grey skin and that tragically sad look permanently plastered on their faces, someone would definitely offer me a seat". Damn my able-looking body. Maybe I should cry or something....

Invisible illness is both a blessing and a curse. It makes it easy to blend in as one of the "normal" ones and also means others think you should be capable of "normal" things when that is far from the case. 

Without sounding too full of myself, I look really healthy. I get told this regularly and I can't argue. Often I look healthier now than I have in much of my adult life. It's a weird fact but I think the last time I looked this healthy I'd been working on kids camps for two months in a Spanish summer. I'd spent everyday in swimwear and had a glorious tan. The whole camp had also been hit by food poisoning three times in a row which means I hadn't kept anything down for several days and for the last week had resorted to three handfuls of cereal a day and a piece of fruit if I could get my hands on one. I was the trimmest and most tanned I had ever been in my life when I returned to Madrid and my friends, slightly shocked by the dramatic change, asked me what I had done. The weirdest fad diet of my life....my pre-cancer life. 

As I was saying, I look almost the healthiest I have in adult life now. I have this crazy tan I think I will dub my cancer tan because I've been known for being shockingly pale. On one holiday back from England my mother genuinely described me as translucent. My endocrinologist and I suspect this is to do with the fact that I can't produce cortisol myself and am potentially under replacing. Yup, that's right, my tan is a wierd medical side effect. Probably one of my favourite side effects of the bunch.  

I've learnt to draw my face on to make myself look healthier. My eyebrows are a new love. Sometimes it's not until you lose something that you realise your love for it and that is true for my eyebrows. It wasn't until chemo threatened to make them an endangered species that I realised how much they meant to me.  When I get ready for my day I make an effort to take care of myself, put my face on and look as healthy as possible. It's a great way to keep myself feeling the best I can. It's also a giant trick for many because I walk out the house looking like just another person. 

It's pretty cool. Sometimes I play a game of how long can I chat to a person without telling them I have cancer. I'm not embarrassed, it's just a fun challenge. And sometimes it's nice to not have cancer (at least in that person's head) for a while. Recently I managed to attend a social function for over an hour and avoid anyone new finding out. It is amazing how good I'm getting at creative yet honest answers. I was quite proud of once managing four hours with a friend of a friend before getting to a question I couldn't answer honestly and avoid the topic. Considering I was about to spend the whole weekend with this guy I thought I'd best let the cat out the bag. His response was wonderful. "Ah I've heard about you. But I didn't realise it was you. How are you so happy?!" The answer to that question was obvious I thought, "I'm still alive". 

Invisible illness also makes life challenging. I'm 32 and had been a really independent adult until I was 30. Now I need help with lots of seemingly easy little things. I can't lift much heavy stuff, I can't stand for long periods of time, I can't walk particularly fast or long distances and hills seriously are my nemesis. In the past I didn't hesitate to walk anywhere but these days I need to ask if there's going to be a hill involved or if I can sit down part way. Looking at me, it's not obvious to pick that some days walking for 15 minutes could absolutely wipe me out.

Planning to be able to get a seat is a big deal for me. I always try not to use public transport during peak hours because I know the hour from where I'm staying into Sydney would be impossible for me standing. Actually standing is one of the most painful things for me to do. Not as painful as a sit up and definitely not as painful a press up (which automatically involves face planting the floor), but still pretty painful. I've not felt confident enough to ask anyone to allow me to sit down yet so I just try to travel when its going to be quiet. Then there's stools. I hate stools. I can't have my feet dangling as it's  really exhausting on my body so I always have to insist on getting a table with proper chairs or I know I can't stay long. For a while I struggled to sit in a chair without arms as my core was so weak that holding my body up by myself hurt and trying to ask about the chairs before going anywhere was really awkward.

I don't like going anywhere without toilets. I really am a 90 year old posing as a 32 year old. When I was taking oral chemotherapy it played havoc on my stomach. I carried sick buckets as an emergency precaution but to be honest I never wanted to be that girl vomiting into a bucket in a public place, surely nobody wants to be that girl. So I scoped out the bathroom as soon as I walked in a place and actually worked out the easiest way to get to it. That planning has paid off for me more than once.

I went through a patch of time where crowded spaces really freaked me out. I didn't realise I had become like that until I was at a park on hill in Santiago. To get right to the top we had to walk up this skinny, steep path of stairs. I managed to get to the top and took a few photos but there were so many people I started to feel stressed and had to get down as quickly as possible. I realised that after the surgeries I was both very sore around my stomach and had bad balance. I was terrified of someone bumping me and either hurting my scars or knocking me off balance and I wouldn't be able to catch myself. I'm getting much better at crowds. I put that down to my love of going out and therefore needing to be okay with getting bumped but I've really had to work on staying calm in situations I was completely fine with in the past.

My body is dependent on medication to function. I take pills three times a day just to keep functioning. That's a combination of cancer stealing an adrenal gland and the nasty chemo pills I was on. The pills aren't a big deal now, however I have to manage the times my body needs them with meals. It means when I'm out I have to plan to be able to eat something at the times my body requires it. This can be a real pain when doing anything with a group because I don't want to have to tell everyone we need to stop to eat because my body needs it. Sometimes it means planning to meet later so I know I can take pills before I go or if I'm staying somewhere with others I pack snacks to ensure I can eat when I need to.

A half packed hospital bag sat in my room while I was on chemo. My health means one day I could be out living my life and that night I could be admitted to hospital. I got sick that quickly and it was serious when I did. My body can't fight infection like it used to be able to so I am extra paranoid these days. I carry hand sanitiser everywhere and use it constantly. I have a whole hand washing routine in public toilets which involves trying to touch as little as possible and still sanitising as soon as I get out. A cough from some passing stranger terrifies me and a "little sniffle" to some is a threat to life as far as I'm concerned. During my time in New Zealand this month there was a flu epidemic, suddenly I saw everyone as poisonous. Then I heard gastro was going around and I considered full blown quarantine. For me, even now, any bug could result in a hospital stay and, as lovely as the nurses are, the hospital is never my accommodation of choice.

I was recently chatting to my friends who have also had cancer. Thankfully their news has been more positive than mine however they still live with challenges from the toll cancer has taken on their body. I asked them if they tell new people they meet. Even after the cancer leaving their bodies it continues to effect their lives and the things they can do and they have to manage how others will respond to that.

I know many people who live with different invisible illnesses, being open about my health has encouraged others to speak to me about what is going on for them. All of these people, whether it's cancer or something else, work so hard just to get out and do what I had always considered "normal" things. The planning, physical and mental energy and sheer determination required is huge. I admire every person who pulls themselves up and walks out the door each day.

So here I am, looking like a "normal" person, deceptively healthy. My reality is I have to plan right through my everyday life. I adore going out with my friends and do so regularly but for me it's not just a case of walking out the door. I have to think ahead, planning all the way. Plus I need to paint my face on so I blend in and everyone thinks I'm just breezing through life acing this cancer crap.