Birthdays and Chronic Illness

TW: mortality

It’s my birthday this week. It’s not a ‘big’ birthday, but birthdays always feel a bit weird when you have a chronic, life limiting illness. Lots of people dislike birthdays for many reasons:

– you’re officially older

– it can make you think about your life achievements/failings/future plans

– some people question their mortality

– you might compare yourself to other people the same age, and what they have and you (seemingly) don’t

The difference between being chronically ill on a birthday and just having a birthday is that things happen a lot more gradually if you age in the normal way. You have time to do something about the things you want to achieve, you can still persuade yourself that old age is an age away. Or, at the very least, you can drown yourself in alcohol and deny it’s your birthday entirely. Alcohol, sadly, isn’t compatible with many illnesses!

But with chronic illness, for many people, you wake up one day and your body decides to fail. It might have been in the pipeline for a while, but it was kind of just running in the background and you didn’t notice it. So it feels like you woke up one day sick, and that was it. You didn’t get the gradual ageing process or the chance to act on your plans. You suddenly don’t have a choice as to whether you get to do things you’ve always wanted to do. You’ve accelerated from being one age to feeling like you’ve lost 20 years of your life overnight, because your body doesn’t work the same way as another person your age, but more like an elderly person instead. On top of that, a lot of chronic illnesses then have a downwards decline the older you get, so you feel even more robbed of your life- it’s not going to get better. It just gets worse from here. And a birthday is a stark reminder of that.

Add in any life threatening elements your illness might have and birthdays cease to be recognition of you getting older and more ‘well done, you didn’t die this year’. Even if you can have a normal life expectancy, in theory, with your illness, you know fine well that any complications or other, new health problems could quite easily shorten your life expectancy dramatically. So you look at your new age on your birthday and think ‘how many more of these do I have left?’

It’s weird. As an (almost) 32 year old, my body is closer to a 70 year olds in terms of what it can do. While you might have accepted that things aren’t going to miraculously improve, other people haven’t and seem to be waiting for you to get better. Comments like ‘I hope this year is a better one for you’ or ‘maybe you’ll get better by your birthday next year’ crop up more often around your birthday. They’re well intended, but they ram the message home- that’s another year you’ve been sick for. Consequently, you feel in limbo.

That said, there are some advantages to chronic illness:

– you don’t have the option of a midlife crisis. Because you’ve been forced into illness, you don’t really have the sudden ‘oh my god, I’m old’ realisation hitting you in the face which other people have. Mostly because it’s very difficult to deny illness exists in the same way as people do about getting older

– you appreciate what you’ve actually got, despite all the barriers. The small things in life are definitely the big things. You learn that a lot sooner than the average person

– death stops being this unknown thing that happens in the future. It sounds weird, but it’s a lot less scary thinking about it when potential death is entirely possible some days.

– you actually try to achieve the things you want to do in life. They might not be what you planned, but you don’t put things off like other people do, because they’ve taken time for granted.

So here’s to another year of having stayed alive. To having made the best of a challenging situation. To having enjoyed small moments which I know I would have taken for granted before I was ill. It’s not how I thought it would go, but it’s not been all bad either 😉

Underweight Vs Overweight

A friend and I had a conversation a while ago and what she said stuck with me. She said:

‘People assume that thin people have their s*** together. Which is wrong because you can be underweight and really unhealthy and overweight and totally healthy’

It’s sad to say, but it’s true. As a quick back story, I used to be super thin, wearing a UK size 8. Sure, I did sports and was incredibly active. But at one point, I was surviving on whatever ‘meal’ the vending machine at university provided me with (usually cheese and onion crisps and a dairy milk), I wasn’t getting enough sleep and I was almost proud of the fact that most days I had to choose between eating or going to the toilet, because I didn’t have time to do both. Unless I ate on the toilet, which I did a couple of times!

I looked healthy, but I really wasn’t. I was having a lot of issues with my gut, I wasn’t sleeping much, I had a seizure and chest infection after chest infection. I could literally eat whatever I wanted and never put on weight. At that point, I was buying aged 13 jeans from the kids section of New Look because they were cheaper and fitted me better (I was 21). But because I wasn’t overweight, no one said anything to me about my lifestyle or diet. In fact, no one really asked about it, they just assumed I was doing everything right.

Fast forward 10 years and I’m now double my body weight than I was back then (seriously). My BMI puts me at obese. But I eat more healthily than I did then, I get sleep, I’m not running on adrenaline. I generally just look after myself the best I can and don’t treat my body like a machine. Despite all that, whenever I go to the doctors/have any interaction with HCPs, I get the same routine:

1) you’re overweight

2) your health would improve if you lost weight

3) have you tried to lose weight?

4) do you exercise?

5) you’re increasing your risk of X illness because you’re overweight

And so on.

Any symptom I have, and I mean *any* symptom or illness, is blamed on the fact I’m overweight. So I fight back now:

1) I know. You think you’re the first person to notice?

2) of course it would. That’s also obvious. But you haven’t looked at why I’m the weight I am, you’re just making an assumption I’m doing something wrong.

3) eating less and moving more is not the problem. It’s not a question of willpower or motivation. My weight is the way it is *because* of my illnesses, my weight hasn’t caused my illnesses.

4) if I exercise the way you want me to, I will die

5) I’m at risk of all those illnesses anyway because of my endocrine problems. Losing weight won’t prevent me getting them, although it might slow them down.

It’s always the same attitude- you’re fat, so you don’t know how to be healthy and you’re lying when you say you eat healthily and exercise. You’re lazy, you just need to try harder. You can’t have followed your diet/exercise plan properly. You don’t have your s*** together, basically.

I never got blamed for my causing my health problems when I was skinny. Which is essentially what healthcare professionals do when they’re going through their comments. They’re blaming me for being chronically ill, casting a judgement which then taints the quality of healthcare I receive. As an overweight person, it generally takes longer for me to convince someone to refer me for further tests/appointments than when I was thinner. My integrity wasn’t called into question- I never got asked if I was med compliant a much as I do now I’m overweight. The notion being that if I’m ‘lying’ about not being able to lose weight, I must be lying if I say a medication hasn’t worked (ie I haven’t been taking it properly). People just see me how I am now, make a judgement and then assume I’ve always been like that. But even if I was overweight because of ‘something’ of my own doing, there’s still something that needs looking at. What if (and I’m making these up here) I’m obese because:

– I’m overeating because I’m depressed

– I’m not exercising because I’m too scared to leave the house (for whatever reason)

– I’m really struggling financially so I eat what’s cheap, which is carb heavy.

– I feel the need to eat everything on my plate because my dad used to beat me if I left anything

– I don’t have time to eat properly because I’m trying to work 3 jobs. So I eat whatever I can eat as quickly as possible

– I’m addicted to drugs so I eat all the time with cravings and then don’t remember having eaten so much

There are so many social reasons as to why people aren’t necessarily eating a balanced diet, but it’s not very often that medics actually ask you what has made you overweight. In fact, I think I can count on one hand the amount of times someone actually asked about it properly and didn’t just say ‘you’re overweight and damaging your health. Get your s*** together’. So what happens? You either don’t go back to the doctor because you feel ashamed and your health deteriorates further, or you walk away feeling depressed, which exacerbates the problem further anyway. How is telling someone they’re overweight and fat shaming them (basically) helpful if you’re not going to do anything else about it?

This viewpoint isn’t just limited to healthcare professionals though. And I probably was one of those judgemental people in the past that thought that anyone overweight had brought it on themselves. But then, like I said, I still fitted into kids’ jeans at that point, so my view of the world was still pretty childlike to match. I like to think my stance has evolved since then. So why is it that people think it’s ok to comment on people’s weight? It’s less obvious than being told ‘you’re fat’ by doctors, so here are some examples:

– comments when you order a pudding when eating out. I always feel the need to defend my choice to do so now, whereas I never did before. Why shouldn’t overweight me enjoy a treat like skinny me did? Is one dessert going to make me put on 10kg? No. But people assume that I must eat that kind of food all the time.

– people tell me what to eat a lot to ‘cure’ me anyway, but I get way more comments about what I ‘should’ be eating now I’m overweight

– ‘are you eating for two?’

– comments as to the amount of calories in something they’re eating. And if I don’t react in a suitable way and take the hint, comments about the amount of calories in something I’m eating.

– ‘you’ll have to go for a run now you’ve eaten all of that. Burn off some weight’

– ‘you know X is bad for you, right?’. Clearly I need a thinner guru to guide me through not eating a stick of butter as a snack, because I wouldn’t have worked it out for myself.

No one ever believes you used to be skinny. Never. But if a skinny person says they used to be fat, everyone believes them. And then tries to use them as a motivational tool for all the other fat people. You get judged for being overweight if you don’t exercise, but people laugh at you if you do try to exercise. And do you know how difficult it is to buy gym clothes in large sizes? Virtually impossible. Why, if people are so keen on all the overweight people losing weight, do they only make practical sporting clothes up to a size 18 (if that?)? It just puts you off even more. And exercise is *hard* when you’re overweight. It’s like dragging an anchor around in comparison to when I was thin.

Because overweight people don’t have their s*** together enough to exercise. They don’t care what they eat. They’re incapable of reading about healthy lifestyles and implementing them. And if they say they’ve tried something and they’re still overweight, they must be lying.

I’m going to add in a bit about how thinner people *do* get comments about their weight. Because people still did comment on my weight when I was underweight. But it was far less judgemental and pretty much always done in a way that was meant to compliment rather than ‘inform’ me of what I should be doing differently. For example:

– ‘you need to eat more’

– ‘you’ll only be skin and bones soon’

– or you’re compared to an anorexic because you’re so thin. I remember someone I know being really offended that people kept saying she was in denial about having an eating disorder because she was so thin. But she actually ate lots, she was just thin.

So it does happen when you’re thinner too, at the other extreme where people can comment on you being too thin. But in general, I found I was more likely to be listened to more and judged less when I was skinny versus now when I’m overweight.

I think the take-home here is people should really just mind their own business! Pointed comments and assumptions are never helpful and don’t serve any purpose except it then makes that person feel more defensive about any future conversations. And that’s the important thing people forget here- you might be saying your ‘helpful’ comment or piece of advice for the first time to someone, but guaranteed it won’t be the first time that person has heard it.

In general, we need to stop being so judgemental. Because if we actually looked at our lives in detail, who actually does have all of their s*** together?