The original article is here, but I’m including my own responses below…
I suffer from migraines and have haemochromatosis.
- You don’t look sick – No. Haemochromatosis doesn’t actually make me feel sick either. It’s still there though. If I’ve got my head down on my desk at work and have the lights switched off, it probably means I have a migraine. If I say to send me an email and I’ll reply to it as soon as I feel better because it hurts to talk, just take my word for it.
- You’re too young to be sick – So all those stories you hear about kids with cancer are just, what? Made up? Illness can hit at any age. I might not fit the typical demographic for haemochromatosis, but it is what it is. I can’t do anything about my genetics.
- Everyone gets tired – Yep. But there’s a difference between being tired for a day or so because you’re hungover or didn’t get enough sleep, and feeling like that day in day out for years.
- You’re just having a bad day – Yep. A bad day every now and then is something everyone has to deal with. Imagine having a bad day every day? Welcome to my life.
- It must be nice not having to go to work – Oh, that’s hilarious. I still go to work every day even when I feel like hell. If I don’t go to work, I don’t get paid. If I don’t get paid, I can’t afford to pay my rent or put food on the table. I don’t have the luxury of a family who is able to financially support me.
- You need to get more exercise – Classic! I could probably outrun every single one of you. I run at least 10km a day, and I compete in marathons and triathlons a few times a year. I swim. I surf. I scuba dive. More exercise? lol.
- I wish I had time to take a nap – When I get a migraine in the middle of the day and have to put my head down for a while until the drugs kick in and it subsides, it means I have to make up for whatever work I missed out on later. I’m lucky to have a position that allows me some degree of flexibility with my work hours. But ultimately, any time I miss due to a migraine I have to make up for later on.
- The power of positive thinking – I think I can! I think I can! I think I can’t actually change my genetic makeup. Shocker, I know!
- Just push through it – I could let migraines and haemochromatosis dictate my life. I don’t. I still get up every day and go to work. I come home every day and have to cook and clean. I don’t have any alternative. I live by myself, and I don’t have family support. Must be great to have the luxury to offload some responsibility on someone else, but I don’t have the option to not push through it.
- It will get better, just be patient – Better? I’ve been suffering migraines since I was 5 years old. They get progressively worse every year. Due to my diagnosis of haemochromatosis, I have severe liver damage and I have had to totally change my lifestyle. While the lifestyle changes have improved my health, they haven’t made my life “better”. They’ve made it more miserable.
- Have you tried [insert random treatment here]? – I’ve tried everything the medical professionals have suggested. I see a hemotologist, endocrinologist, gastroenterologist, hepatologist and a nutritionist for my haemochromatosis. And I see a neurologist about my migraines. Unless you’ve got a medical degree, you’re not qualified to comment on what I should or shouldn’t do about my medical conditions.
- You should stop [insert thing here] – I don’t smoke. I don’t drink. I’m vegan. I’m gluten free. You really want to tell me what I shouldn’t do? Get stuffed.
- It’s all in your head/you’re just stressed/depressed/anxious – At times, yes, I have been stressed and anxious. But here’s the thing – all those medical tests I have been through also say that I have haemochromatosis and that I suffer from migraines. They are not mutually exclusive.
- You need to get out more – Believe me, I’m already out more than most people. I exercise outdoors. I’ve climbed Kilimanjaro. I’ve climbed up to Everest Base Camp. I surf. I scuba dive. I travel a lot. Trust me, not the issue here!
- You take too many medications – Actually, I try to take as few medications as humanly possible. Medications put strain on my liver, which is the last thing I need. Under very strict medical supervision, I take medications for what ails me. All my doctors know exactly what my other doctors have prescribed me. I don’t take a single medication, either over the counter or prescription, without running it past all of my doctors first.
These are the things listed in the article. Honestly, what gets me the most is:
- But are you sure it isn’t [insert more simplistic cause]? – Yes. Because believe it or not, I’ve been run through the gamut of medical professionals. I’ve had the tests done. Unless you just completed a medical degree without anyone knowing, my doctors probably know better than you do. Inconvenient when it doesn’t suit you, huh? Much harder to bully someone when it’s a genetic disorder rather than an eating disorder, isn’t it?
- You’re just being picky – No. When I say I can’t eat something, it’s because of a medical condition. Sure, there’s foods I don’t like – and I’ll respond as such by saying “I don’t like [insert food]”. But if I say I can’t then don’t try to guilt me over it. Don’t tell me to get over myself.
I’ll admit, most people I know are very understanding. There’s really only a handful of people who give me grief over this stuff. But some of them are so persistent about it. I might go into detail about some of the bullying at some stage, but it happens. You wouldn’t believe the lengths some people will go to over this stuff.