Living Well: things you should not say to a chronically ill person

It’s Monday morning and I’m nursing another migraine hangover. It’s raining outside, so my condo is a nice and cool temperature. I actually had to close the balcony door this morning and take my new cushions inside. And like many other nights with insomnia, I was wide awake at 5:00 am. That was far too early to get up, so I started making breakfast around 7:30 am and here I am. Ready to face the day.

Oh great. Someone’s car alarm is going off again. Yay, for city living.

Living with chronic illnesses is a tiring thing. Yesterday, I was fighting a migraine all day. At 8:00 pm, I got really bored and decided, “I’m going to go back to Walmart today! And find some bedsheets and a few other things I forgot on Saturday.” Great plan. But things didn’t work out that way.

I got to Walmart and about five minutes into my shopping trip with a half full basket, because my stupid dollar coin wouldn’t work in the cart – I started getting dizzy again. Then came a hot flash. And then the migraine hit full on. I managed to pick up another item and ran for the cash reigsters.

It took all my strength not to get sick while waiting in the line up. Luckily, it was short. I ran outside after paying, and ordered an Uber. I had a “Karen” moment when the Uber pulled up. It was a mini-van. I hate mini-vans. The back seats are always so hard to climb into with my knees.

I tried climbing into the front seat and the driver said, “No, Uber doesn’t allow it,” I almost started crying. I gave him a frustrated look over my mask and struggled to get into the backseat. While there were cars waiting behind us. I apologized to the driver later and “Sorry, I have a really bad migraine, it does this to me,” and I could see that the guy didn’t care. And no, I didn’t give him a low rating. No one was at fault in this story.

What people don’t know about migraines, is that they can alter your entire personality or mood within just a few minutes. The amount of stress that your brain goes through during a migraine, is equivalent to a stroke or heart attack. Severe migraines, when you get migraines almost daily, hit even harder.

When I got home, I took two gravols, and some pain meds, and went to bed. And that was pretty much my night. I did get to sit outside for about an hour and enjoyed my new patio furniture.

I was on Twitter this morning, searching for something to write about today. I’m running out of ideas for daily posts. And a discussion triggered me.

Someone vented about how people shouldn’t “offer up advice” to someone who lives with a chronic illness. This hit home. Even on this blog, with my Living Well series where I educate others about living with chronic diseases – I still receive some of these comments on a regular basis, “have you tried this?” Or “how about this oil?” Or “how’s your magnesium?”

So, today’s post is going to be titled — “things you shouldn’t say to a chronically ill person.”


“Ugh, you’re always sick”

I found out at Christmas time that the person who complained about me at work was a younger coworker who couldn’t understand why I was always sick and needed part-time hours. On my last day of work, she aggressively sad, “Ugh, you’re always sick,” and rolled her eyes at me before walking away.

I had been on part-time hours for months and my employer knew very well that I was living with a disability. They had agreed to the “accommodation” – but my other coworkers started resenting me because of it. In the end, it makes for a very hostile work environment. I went off work and my doctor asked for a work from home accommodation, but the employer was just not having any of it. So, I’ve been off work since. Then the pandemic happened, and here we are.

When I had bronchitis, I heard comments like, “you should quit smoking” which is hilarious (/me sarcasm), because I was one of the few on the team that didn’t smoke and never have. It was the smell of smoke on their clothing that triggered coughs.

Losing friends is a part of life now

I’ve lost friends over my disabilities. My not being able to drive due to anxiety is also a deal breaker for many when it comes to dating. So, I mostly just stopped dating. I mean, there are other reasons like abusive and toxic relationships, but not driving can really suck sometimes. Here’s an actual conversation with a former friend.

“You’re always sick when I want to hang out with you,” he said one night.

“Well, that’s what living with a chronic illness is like. Sorry, but today is a bad day,” I said.

“You should really talk to your doctor about that,” he said.

“You do know what chronically ill means, right?” I said and the conversation ended.

Unfortunately, some people are just that way.

Have you talked to someone about this? You shouldn’t be sick all the time.

This. This one so much. When one is chronically ill, regular medical appointments are crucial for maintaining good health. Some diseases like arthritis or hypermobility worsen with age, wear and tear. Some diseases or illnesses NEVER go away. Living well with chronic illness comes from having a good medical team, an even better support group, and taking the right medications, and getting the right treatments.

I don’t think people quite get the grasp of what “chronically” means.

You should exercise more and watch what you eat.

Yeah, because that’s the last thing I want to do when my brain feels like it’s going to explode. While exercising regularly is great for bone and joint health, it’s not the end all cure for disease. Please, just don’t.

Mental illness isn’t a real disease.

Or my favorite line I encountered recently, “you’re just an attention seeking whore seeking sympathy” or “just keep popping those happy pills” or “she might commit suicide and blame it on me.” Yeah, those are comments and posts I’ve seen from other bloggers about people like me who have gone to therapy.

I worked professionally in addictions and mental health for FOUR years. I’ve seen what these illnesses can do to people first-hand. I’ve also experienced severe anxiety which is related to my migraines. This line of thinking is just dangerous and comments like these – are intended to inflict pain on others. Don’t be that guy.

Have you tried…

My number one pet peeve of being a blogger is the amount of unsolicited advice I get about my migraines. Even on posts where I’ve shared all the treatments I’ve tried and introduced new ones for patients who might be looking for ideas. Anyone who has been reading my blog since 2019, knows that I struggle with migraines. They know everything has been tested and tried.

It’s pretty ignorant to assume the patient who has lived with an illness for a long time – hasn’t done every bit of research to find out what treatments are available to them. Most of us have. It’s why I started this blog! I’m sharing what I’ve learned with others.

It’s also really important to note that while you may have found medication that works for you – that medication may not be suitable for someone else. You don’t know their history, allergies or even lab results.

So please, unless specifically asked for advice – don’t offer it.

It’s one thing to say, “I use Maxalt for my drugs because I get auras” as opposed to “You should try Maxalt” even when I’ve stated that I don’t get migraine auras. Sharing your experiences – that’s fine. I enjoy hearing about them.

“But you don’t look sick.”

Ugh. I’m not even going to go into detail here. I blogged about this one recently and it’s still getting likes. So, just please don’t say this. Not all disabilities are visible. You don’t know what people are going through on the inside. Just be a good person, a good friend, and offer support when possible.

And lastly…but most importantly:


HAVE PATIENCE!

If your friend has been diagnosed recently with a chronical or terminal illnesses or has a sudden disability, please be patient with them. They may not always be up for a social outing. They may have to back out last minute when you have plans due to symptoms popping up. It doesn’t necessarily mean they don’t love you – it just means they aren’t feeling well and are not up to getting together.

This has happened to me so many times. It got to the point that I stopped making plans. Then the pandemic happened which was like a sigh of relief for me. I stopped feeling guilty about backing out of plans. Those “feeling good” days are far and few in between and I make the most of them. But you never know when a migraine or other symptom will pop up and leave you feeling useless for the rest of the day – or even week.

The best thing you can do is just offer support and understanding. Because most of us, feel really shitty about having to back out of important plans. I always feel like I’m disappointing others. And that’s a big part of why I’m not working right now.

And on that note, I think I’m going to get off my high horse and start my day of cleaning – and try to be productive now that I’m migraine free.


Are you a migraine sufferer? Let me know your pet peeves about living with a chronic illness. What are some things people have said to you that really frustrates you?


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