What I Wish People Knew about Chronic Illness

I’m a chronically ill person. I’m not quite ready to embrace the word “disabled” just yet, but I have no choice but to accept that I have chronic illnesses. I have had these most of my life. They are just catching up with me as I get older, and they’re now easier to spot, though not always.

Many people in my life don’t know I’m chronically ill. Most of the time, I prefer it that way, for various reasons. Some of these reasons are because of things I wish people knew, but I just don’t have the energy to explain. Perhaps this post will help clarify things.

Here’s what I wish people knew about chronic illness.

1. Not all chronic illness is visible.

Most of the time, unless I say something, people won’t know I’m chronically ill. I wear pants that cover my knee and ankle braces, my S/I joint belt is usually under a sweater, my finger splints look like rings, and most people assume I’ve injured my wrist if they spot my custom brace. My illnesses aren’t always visible. Some days, they’re more visible than others, but for the most part, you can’t tell if someone is ill or disabled just by looking at them.

2. Chronically ill people aren’t faking.

It’s been a while since I’ve been questioned about my illnesses. This mostly happened in childhood. “She’s just looking for attention” was a common explanation for my symptoms when I was young. But even so, I’m still nervous when I need to use an accessible washroom or take the ramp or elevator instead of the steps, or when I need to sit down in social situations where people are expected to remain standing. I always feel judged. Perhaps it’s all in my head. But perhaps it isn’t.

There are so many chronically ill and disabled people who have been harassed for parking in accessible spots, called lazy for using mobility equipment, being fat-shamed for having lymphedema (not that fat-shaming is OK in any situation) and the list goes on. I wish people knew that you can’t know if someone needs a service just by looking at them.

3. You’re not an advocate for disabilities when you harass disabled people.

Related to the above, many people feel they’re helping disabled people by yelling at the “able-bodied” person taking up the accessible parking spot, or that they’re looking out for someone’s best interest when they suggest someone needs to lose weight.

Often times, you’re harassing the very people you’re pretending to help. Because you can’t tell if someone is chronically ill or disabled just by looking at them. You don’t know why someone has gained weight, and you don’t know someone’s health status based on their body type.

You don’t have enough information to make a judgement about someone you’ve only looked at for less than a minute and with whom you’ve never had a conversation. Always assume the best of people. If they’re using a service, assume they need it. If their body doesn’t fit your ideal of beauty, look elsewhere and mind your own business.

What I wish People Knew About Chronic Illness

4. I don’t want your cure.

I have an excellent team of health professionals helping me live my best life while taking into consideration the limitations I face. I am finally learning to love my body and listen to it. I never, I repeat never, want your cure or advice. Especially if your cure comes in the form of a multi-level marketing package.

But even if you feel that you have my best interest at heart and you’re not trying to sell anything, I still don’t want to hear how to take care of my illness from a person who has little to no knowledge of my conditions, and who is certain to have zero experience living in my body. Learn this lesson as soon as you can: if someone hasn’t asked for your advice, they don’t want it. This is especially true of people with health conditions.

5. You’re not entitled to my personal information.

I personally don’t mind answering questions about my illnesses (as long as you’re not trying to sell me a cure). But at the same time, I don’t want my life to revolve around them either. It gets tiring answering questions all the time, and even more tiring deflecting people’s advice about how to live my life/manage my health.

You’re not entitled to intimate personal information just because I have chronic illnesses. If you wouldn’t ask a random, healthy stranger about how they manage their bedroom life, don’t ask me, either. By the way, same goes for pregnant women. If you wouldn’t make comments about a random person’s body, don’t do that to a pregnant woman. It got so exhausting during my pregnancies when all people would see was my body and not me. Speaking of exhaustion…

6. Chronically ill people are often exhausted.

If I turn down an invitation, it’s not because I’m a flake or I’m avoiding you. Sometimes, I just don’t have the energy to go out, and on high pain days, I’m not very good company anyway. Also, I’m highly unlikely to go out during the pandemic unless I really need to do so. Please be patient and understand that sometimes, we just need to rest. This is true for a lot of people, not just those of use with chronic illnesses.

7. I still want to be invited

Just because I’ve turned down your last three invitations doesn’t mean I don’t want to be invited. Even if I can never make it out, I still like to know you’re thinking of me and would like to see me.

8. Chronic Illnesses Fluctuate.

One of the reasons I have a hard time with the “disabled” label for myself is that I view a disability as a permanent thing. Chronic illnesses, on the other hand, while permanent, tend to fluctuate, sometimes wildly, in how they affect the people who have them. 

For example, I can’t and I shouldn’t run or do other high impact activities. Some days I have a hard time even walking for a long period of time, let alone run. But some days, I am feeling OK, and I might run around the yard with my children (even though I shouldn’t). Some days, I may need to sit down for most of the day, while on others, moving around will actually help my pain. A few years ago, I was running triathlons. I shouldn’t have been, and all that running did unrepairable damage to my very unstable joints. Someone who saw me run a few years ago may have a hard time understanding why I can no longer run now.

There are some chronic illnesses that can go into complete remission, such as multiple sclerosis, among many others. That means you might see someone in a wheelchair today and walking around without any mobility aids tomorrow. Not to mention, ambulatory wheelchair users exist. Many chronically ill people face accusations of “faking it” because of these fluctuations. Please, stop punishing us for having good days. And again, always assume the best of people, especially if you don’t have all the facts.

9. I really, really, really, don’t want your diet and exercise advice.

It’s not just that you have zero experience living in my body and probably know nothing about my conditions. It’s also that I’m a former registered kinesiologist and my sister is a dietitian. It’s also that I have a close relationship to the medical professionals who actually know what’s going on with my body. I already have all the information I need, from reliable sources.

Even if you’ve “spent your whole life studying nutrition,” I still don’t want your advice. Even if you’re a “certified personal trainer” or a CrossFit instructor (especially if you’re a CrossFit instructor), I still don’t want your advice. Even if your cousin’s sister’s wife’s neighbour “cured” the same illness I have by going on this diet or taking that supplement, I still don’t want your advice.

This goes hand in hand with “I don’t want your cure.” Does this sound harsh and impolite? So does your constant need to fix me. 

So, if you’re curious about my conditions, I’m happy to tell you what they are and how they affect me. However, not all chronically ill people want to share their personal lives with random strangers, and I guarantee it that almost all, if not all of us, do not want to tell you about the personal issues we face just so you can tell us how to live our lives.

Want to help us?

See us as more than our illnesses. See us as more than our disabilities. For a long time, I stayed mum about my health conditions, because I just couldn’t stand how people would immediately make assumptions about my abilities of lack thereof. But I’m done with that.

My chronic illnesses are part of who I am, and although I’m not my conditions, they’re still a big part of my life. Having said that, my conditions don’t have me, I have them. I am capable, even though there are some roadblocks in my way.

If there is one major thing I definitely wish people knew about chronic illness is that we want you to get to to know us as people, and see us, not just our mobility aids or inability to go on a run.

ADHD Apps! Great apps for remembering stuff

I’ve found some awesome ADHD apps!

ADHD apps can help you remember stuff and organize your day to get things done.

Before I continue this post, I feel the need for a disclaimer. I have not been diagnosed with ADHD. Not yet. For a long time I didn’t see the point of a diagnosis for myself, but for various reasons I now think it may be a good idea to investigate. I suspect all the members of my family, except for my oldest daughter, have ADHD.

My son was diagnosed with it when he was 7. When I was reading the behaviours/symptoms for ADHD for his diagnosis, it was like reading an autobiography. I’ve always been easily distracted, I’ve always had a hard time sitting still, I’ve always misplaced or lost things, I’ve always interrupted people at inappropriate times (though I swear I’ve worked really hard at this and I’m really good about not interrupting now… most of the time), and the list goes on.

As an adult, I have developed many, many strategies for not forgetting things and for staying organized. Actually, I’m well known amongst friends for being well organized, but the truth is that it doesn’t come easily to me; I’m organized because I have to be. If I don’t write absolutely everything down, I’ll forget. If I don’t put things exactly where they belong, I won’t remember where I put them. Which is why I am so grateful for technology and how it can help those who like me, may be a little (or very) forgetful. Here are some apps I’ve discovered that help me so much in my day-to-day life. Maybe they can help you too, whether you have ADHD or not.

1. Habitica. 

I’ve gushed about Habitica on here before (I’ve even added a heading all about Habitica on the blog). But really, if you’re forgetful and also a bit geeky, if you love gamification, and if you enjoy meeting folks on the same journey of self-improvement, Habitica may be for you.

It turns your life into a role playing game and your tasks into quests. Complete your tasks, and your avatar (character) advances through the game, earning you experience points, health points, and mana along the way. You can also get “drops” of pet eggs and hatching potions so you can collect your own cute little critters as you advance through the game. Then you get drops of food for the pets, which you can feed to them so they’ll grow into mounts you can ride. So much fun 🙂

As you complete your tasks, you also get gold, which you can then exchange for rewards that you set up yourself, or some cute things in the game. The game is totally free to play, but if you help Habitica out by subscribing, you’ll get even more cool little things for your avatar, but these don’t have any effect on the game itself, they’re just for fun.

2. ADHD Apps miracle: Galarm (yes, it’s been miraculous for me lol)

Of all the ADHD apps I’ve found so far, this is probably the one I’m most grateful for. Even though I don’t necessarily need the paid version, I’ve purchased it as an immense thank you to the developers for helping me not miss my appointments. Every time I book an appointment or someone books a time to meet, it now goes straight into Galarm. I set an alarm for an hour to 10 minutes prior to the event, depending on how long it will take me to get ready and/or get there.

Although our phones come with built-in alarms, they don’t have a lot of functionality—well, at least mine doesn’t. If I want to set a single alarm for a Wednesday 5 months from now, my built-in app only has the option for me to set that time recurringly every Wednesday until I delete it.

With Galarm, I can set a one-time alarm for far into the future, and I can also make notes about that event. The paid version allows you to set alarms for groups—very handy if you, like me, have a family of forgetful people.

Great ADHD apps to help you remember everything! www.marianamcdougall.com

 

3. Multi-Timer

Ever set a timer on your stove, your phone, or your watch, and then the alarm goes off and you don’t remember what it was for? Or set a timer for one thing on the stove, another on your watch, and another on your phone, all for different things, then need to set a fourth but there’s nowhere to do it? No? Just me? OK, let me explain.

I’m a homeschooling mom of three young children. At any one point in my home, I might be timing a typing lesson, a laundry load, dinner in the oven, or body break times. I can’t set multiple timers with my phone’s built in system. Enter Multi-Timer. With this app, I can set unlimited timers for whatever I want, and I can start those timers simultaneously. It also comes with a multi stopwatch built in. The only downside of this app is that the ads are so incredibly loud. Pay for the premium version to get rid of the ads.

 

4. Floating Notes

Do you love to write reminders on sticky notes and place it on your desk to remind you of something, but then you leave the house without looking at the reminder and forget anyway? This is the app for you.

With Floating Notes, you can write reminders of all kinds which will superimpose themselves on your phone screen, which means every time you look at your phone you’ll be reminded. But not to worry, you can still use your phone just fine. You can pin the notes to the side of the screen so they’re out of the way, and you can set transparency so you can still see behind them. When you’re done with the note, just drag it down to the bottom of the screen to archive it. Genius.

 

These are some of the ADHD apps I use to aid with my forgetfulness. Even though they may not have been created with ADHD people in mind, they certainly do help mitigate the effects of high distractibility.

Do you have any apps that help you remember stuff? Let me know in the comments! And don’t forget to check out the MulttiTalented Life posts on this blog to learn that having lots of interests is actually a good thing!

New Year’s Resolutions When You Don’t Know What to Expect

I’ve never been one to make new year’s resolutions. I know they usually fail, and they’re far too vague to be of much use to me. This year in particular, new year’s resolutions seem to be even more futile… after all, how do you make a long-term commitment when the world is upside down and you don’t know what to expect?

But all is not lost; you can still make 2021 a good year. After all, it has to be better than 2020, right? Right….?

Continue reading “New Year’s Resolutions When You Don’t Know What to Expect”

Get Stuff Done While Fighting Monsters in an Enchanted Forest

I’ve recently shared my new obsession with a habit-forming app called Habitica. Habitica changes your life into a role-playing game—as you get tasks done in real life, your character advances on the platform. It’s a great deal of fun, and I can’t get enough of it. While some people certainly just use Habitica for the task-listing function, some folks get right into the role-playing side of things, which makes using the website even more fun.

Continue reading “Get Stuff Done While Fighting Monsters in an Enchanted Forest”

How to Exercise when You’re Stuck at Home

Many of us have been stuck at home for four months or more. Those of us who are chronically ill are going to be stuck at home for even longer. This isn’t the most motivating situation for remaining fit, but taking care of our health is really important. There are things you can do to stay active, even if you’re stuck at home. Here are some ideas.

Continue reading “How to Exercise when You’re Stuck at Home”

Family Bikes: Great Cycle Touring Set-ups

Travelling is out of the question for me for a long while yet, but a girl can dream. I’ve been missing cycle touring. I’m not sure how much more of that I can do, but I’d still like to try. We learned quite a number of lessons when we went on our family cycle tour in 2016. One of them is that the setup we had for our bikes wasn’t the best for our situation. If we take the road on by bike again, I’d like to try something different. Do you also dream of family cycle touring? If so, check out the ideas below for some awesome touring bike setups that are designed with families in mind.

Continue reading “Family Bikes: Great Cycle Touring Set-ups”

Children’s Nonfiction Books We Read During COVID-19

Children’s Non-Fiction Books We Borrowed during COVID-19

We borrowed so many library materials during the pandemic that I felt the need to break our materials review into several post. If you missed the first post all about the children’s picture books we borrowed, you’ll find that here. This post is all about the children’s nonfiction books we borrowed. Here’s what we read and what I thought

of it. Continue reading “Children’s Nonfiction Books We Read During COVID-19”

Happily Married Doesn’t Mean Always Happy

June 22nd, 2020 marked the day on which I have been with my husband for half my life. We started dating when I was 19, and I’m now 38. We have been married for nearly 14 years (we’ll be celebrating our 14th anniversary on July 29th). We are very happily married, and we make our marriage work. But being happily married doesn’t mean we’re always happy. Actually, I believe we’re happily married because we’re willing to be unhappy at times.

Continue reading “Happily Married Doesn’t Mean Always Happy”