I have been wanting to write this list for a while now, but I never felt like “coughing for 3 years and regularly sick” was a strong enough podium to write from. However, with my nice new title of Person with a Primary Immune Deficiency, I’m totally allowed to write it now! It was penciled in my head for months and written while I was sick so excuse the sarcastic undertones (I was feeling pretty terrible at the time!)

This is written as a kind of “I’m joking… but seriously… but yea kind of a joke… but maybe take it kind of seriously?” sort of list. I don’t want it to seem like I don’t understand that pretty much everything on this list is from a really well-meaning place of love, and pretty much every single one of these things have been said by close friends and even family members (although parents get a free pass for life).

If you’ve said one or two or all fifteen things on this list, I get it, you definitely are just looking out for me. It’s more just saying I’ve heard these things a million bajillion times over my lifetime and just laying it out there why it’s kind of painful sometimes! It’s not personal – the fact that something you said made the list means that many other people have said it as well 🙂

Also, as I’ve said in my first post, my Common Variable Immunodeficiency isn’t  (yet?) as bad as some others so it’s probably not something everyone will relate to (i.e. no chronic pain or autoimmune disease etc) but I bet loads of people with CVID have heard all of this too!

So here we go…

 

1. “Oh, you still have that cough?!” (after one week)

I’ve had it for around 3 years, so yea, I’ve still got it since last week and I’ll probably still have next week and the week after that and the week after that.

Please try not remind me, people have been saying this to me for, well, 3 years.

 

2. “Maybe you should go to the doctor…”

What is this “doctor” you speak of? Oh you mean that lady I’ve seen so many times this year I’m probably single-handedly helping fund her kids to get through medical school?

If I haven’t gone, I will, don’t you worry. Mamma wants a neurosurgeon and she ain’t getting it without me!

 

3. “Have you tried [insert medicine/tonic/vitamins/herbs/naturopathy/acupuncture/witch doctor]”

This is one of the most well-meaning things people say to me, and sometimes it’s a new idea. Also, this is totally ok if you’re a doctor or have a deep understanding of CVID, but if you’re not, unless you’re really scraping at the latest medical revelations, please don’t. I’ve probably either done it or decided not to. I’ve been sick for several years, and been a sickly person for most of my life – people regularly offer advice without me asking.

If I don’t use cough medicine, it’s because I don’t believe it works. If I don’t want to take something because of how it reacts with me, you won’t convince me to change my mind. And yes, I’ve already taken or am taking a million different vitamins and probiotics which haven’t ever made any noticeable change. I’m taking them daily though, don’t worry.

I’m also poor – being sick is expensive. Unless you’re offering to pay/gifting me medicine/or have a friend who can help me, I’m not sure I can afford a shot in the dark, as good as an idea as it sounds.

I really am sorry, I know you’re just looking out for me.

 

4. “That sucks. I only get sick once a year.”

“And I live on a diet of coffee, beer, chips and cigarettes and never sleep properly.”

Fuck you. Not fair!

 

5. “Excuses, excuses!” (when I don’t drink, need to sit for a bit, leave early, can’t guarantee I’ll be able to go to an event, don’t go out)

Trust me, this one instance you’re seeing is the tip of the iceberg. I regularly can’t do everything I want to and pressuring me won’t help. I’m a social, active person – I’m doing none of this because I want to.

When I get jokingly teased each time I can’t do something I really want to, it cuts me a little inside. Even so, I’ll smile and try say something polite or funny to try detract from how gutted I am I can’t do everything I should be able to (unless you’re like, the hundredth person to say this then maybe I’ll snap at you and get upset… Sorry Ella… Haha)

 

6. “You’re always sick, lolz!”

Yup, that’s pretty funny. Feeling unwell so often, missing out on work, social events, spending all my time and money on doctors and medicine, getting bedridden, being unable to exercise and genuinely worrying that my health might kill me is pretty funny.

I know you’re trying to make light of my situation and I appreciate that, but as above, it can sometimes be hard for me to see the humour in something that’s physically and emotionally painful for me.

 

7. “You know you can drink on antibiotics, right?”

I’ve taken 7 different lots of antibiotics in the last 3 months and usually have on average an infection that will require them every month or 2. So yea, I know a thing or two about antibiotics and the effects of drinking, binge drinking, eating, not eating and most things on them. Don’t worry. I can even feel the difference in my sweat when I exercise on antibiotics.

If I’m not drinking on antibiotics, it’s because I know how they negatively affect me. If I am drinking, I’m drinking against my best judgement and I know I’ll pay for it. I don’t need your help in deciding what’s best for my body, I’m pretty good at making my own, sometimes stupid, but educated decisions.

 

8. “But you’re so healthy!”

No, if I was healthy, I wouldn’t be sick 😛

I have a fairly healthy lifestyle, yes. I exercise, yes. I eat well, yes. I go to bed at a responsible time, yes. But no, I’m not healthy, despite my best efforts.

 

 

9. “You pay how much for the doctors?! Mine’s only [less than half the price]”

Similar to #7, I’ve been to a bajillion doctor’s appointments with lots of different doctors in many different medical centres in a few different countries in the last 27 years.

I’ve been to half-decent, cheap doctors, shitty expensive doctors, and now I’m with a good, yet quite expensive, doctor. It’s not an accident, it’s a considered decision. I’ll pay more for a doctor who doesn’t just diagnose symptoms but is preventative in their approach (which is the problem I’ve had the last 27 years).

 

10. “I need to go to the doctors but it’s so expensive!”

As above, please don’t complain to me about how you can’t afford to go to the doctors. I see you drinking and going out. You can afford it.

I promise, I’m spending MUCH more than you on my health and saying that is like salt in the wound. Maybe complain to someone who probably ISN’T keeping their doctor’s children topped up with caviar in their lunchbox 😛

 

11. “Die quietly” (when I have a coughing fit)

Another joke I hear alllllll the time. I’d lay off this joke on people who are literally always coughing – it loses its charm after, like, a year…

 

12. “It’s bad for your body when you take lots of antibiotics”

I know you’re worried about my well-being, but my body doesn’t properly make the things that kill infections and get rid of viruses. This means I can’t usually kick illness very easily without a medical intervention, and believe me I’ve tried. I HATE antibiotics but the negatives don’t outweigh the positives when the positives mean that I don’t die agonisingly from a bladder infection.

 

13. “Ahhh you thought you’d actually get up today!” when you crawl out of your bed after midday

Please don’t tease me, or anyone for that matter, for being too sick to get out of bed. #justsaying.

 

14. “I know how you feel, I had that earlier this year”

Yeeeaa… You probably kind of understand… But if you kicked your illness in a few days or kept up your social life while sick and that didn’t spiral into a more serious illness then no, I’m not sure our health is comparable. 

I regularly watch several people one after the other get sick and better, sometimes without medicine, in the time that it’s taken me to recover from the same thing. Difference is I’ve spent nearly $100 on doctors and antibiotics and it developed into something worse and I also got shingles and then got thrush from the antibiotics (but I won’t tell you that part..).

 

15. “Drink lots of water, eat oranges, go for a walk, get plenty of sleep and you’ll be fine – that’s what I do”

As above, I do that. And no, it doesn’t work the same for me. When your body hates you and doesn’t do anything to prevent you getting sick or help you get better, it will generally take more effort for me than it does for you to get me back to tip top shape.

 

And the whining is over!

Now I’ve told you 15 things NOT to say, I’ll just put it out there that the best thing you can do is just be there. It might feel like you want to say things like “I’m sure you’ll be better soon” but that’s not necessarily true, or offer practical advice, but I have a team of medical professionals working on it so you really don’t need to! Let’s just chill yo! And maybe a hug if it seems necessary 🙂