Able Humans of Ottawa

Able Humans of Ottawa A community health project by BuildABLE. Sharing personal stories from individuals with disabilities, life-altering illness or injuries, and many others - to help bring awareness to accessibility and inclusion in Ottawa.

Based on Humans of New York style story-telling, four(4) Bsc. Nursing students from the University of Ottawa, in partnership with BuildAble Accessible Design & Renovations, conducted interviews in our community with individuals who identify as having a disability, a life-altering illness or injury, parents and/or caregivers, or those involved in disability advocacy and beyond. The goal of this pro

Based on Humans of New York style story-telling, four(4) Bsc. Nursing students from the University of Ottawa, in partnership with BuildAble Accessible Design & Renovations, conducted interviews in our community with individuals who identify as having a disability, a life-altering illness or injury, parents and/or caregivers, or those involved in disability advocacy and beyond. The goal of this pro

Operating as usual

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08/05/2021

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"I'm a business coach and I love that I get to work from home and independently. I love helping to support other busines...
08/02/2021

"I'm a business coach and I love that I get to work from home and independently. I love helping to support other business owners who struggle with how to make things work when they think the only way to be successful is to just hustle harder and work more.

I had undiagnosed ADHD and undiagnosed endometriosis until I was in my 40s. And my whole life I struggled to figure out why it seemed like everybody else could work more than I could and didn't seem as tired. I couldn't figure out how to be an adult the way I thought I was supposed to be. With the ADHD, the executive dysfunction, not being able to prioritize properly, being easily distracted; all of those things on top of being so chronically tired with constant migraines and a lot of pain - I thought that was just kind of life. I couldn’t figure out why was everybody else not like this? Life seemed easier for everybody else.

The reason I like to talk about both (ADHD and endometriosis) is in both cases talking about it has made other people realize what's going on with them. And the sooner people can realize what's going on and start to figure out what to do about it, the better off they're going to be. I get private messages all the time from people asking, ‘where do I go to get assessed for ADHD?’ or ‘I've been thinking about hysterectomies, but I've been scared…’. I get so many private messages from people who don’t feel like anybody they to talk to knows what is going on.
And so that's why I think this kind of stuff is so important. ADHD is always a challenge. It's a challenge for helping make a family run smoothly. It's a challenge for following through on goals in business. It was a challenge with managing my endometriosis in some ways but also a bit of a gift because hyper focused on how to get the thing that I wanted, because I knew it was important. So yeah, managing life with ADHD is tricky. I feel like I’m always trying to figure out if I’m I prioritizing the right things. And then being exhausted. And wondering how to be a successful adult when I’m tired all the time? That's not how they promote being an adult or a successful entrepreneur – both of those are things that we’re told require hard work, focus and planning.

So I’ve learned that you need to trust that you don't have to be all the things you thought you had to be to be successful. Even if you're disorganized, even if you can't or don't want to hustle harder. There are so many ways to use the way your brain works, and the way you do things best and to follow what you love, that will work without having to stick to what you thought the rules were - and what everybody always told you was supposed to be.

That’s really what I most want people to take away from my story, so much of the stress comes from feeling like you’re not measuring up - so change the rules and expectations for yourself and things start to work so much more smoothly!" 1/2

"I'm a business coach and I love that I get to work from home and independently. I love helping to support other business owners who struggle with how to make things work when they think the only way to be successful is to just hustle harder and work more.

I had undiagnosed ADHD and undiagnosed endometriosis until I was in my 40s. And my whole life I struggled to figure out why it seemed like everybody else could work more than I could and didn't seem as tired. I couldn't figure out how to be an adult the way I thought I was supposed to be. With the ADHD, the executive dysfunction, not being able to prioritize properly, being easily distracted; all of those things on top of being so chronically tired with constant migraines and a lot of pain - I thought that was just kind of life. I couldn’t figure out why was everybody else not like this? Life seemed easier for everybody else.

The reason I like to talk about both (ADHD and endometriosis) is in both cases talking about it has made other people realize what's going on with them. And the sooner people can realize what's going on and start to figure out what to do about it, the better off they're going to be. I get private messages all the time from people asking, ‘where do I go to get assessed for ADHD?’ or ‘I've been thinking about hysterectomies, but I've been scared…’. I get so many private messages from people who don’t feel like anybody they to talk to knows what is going on.
And so that's why I think this kind of stuff is so important. ADHD is always a challenge. It's a challenge for helping make a family run smoothly. It's a challenge for following through on goals in business. It was a challenge with managing my endometriosis in some ways but also a bit of a gift because hyper focused on how to get the thing that I wanted, because I knew it was important. So yeah, managing life with ADHD is tricky. I feel like I’m always trying to figure out if I’m I prioritizing the right things. And then being exhausted. And wondering how to be a successful adult when I’m tired all the time? That's not how they promote being an adult or a successful entrepreneur – both of those are things that we’re told require hard work, focus and planning.

So I’ve learned that you need to trust that you don't have to be all the things you thought you had to be to be successful. Even if you're disorganized, even if you can't or don't want to hustle harder. There are so many ways to use the way your brain works, and the way you do things best and to follow what you love, that will work without having to stick to what you thought the rules were - and what everybody always told you was supposed to be.

That’s really what I most want people to take away from my story, so much of the stress comes from feeling like you’re not measuring up - so change the rules and expectations for yourself and things start to work so much more smoothly!" 1/2

"My endometriosis diagnosis came shortly after my ADHD diagnosis, when my disease flared out of control and landed me in...
08/02/2021

"My endometriosis diagnosis came shortly after my ADHD diagnosis, when my disease flared out of control and landed me in the ER. I actually feel like I'm one of the lucky ones, because once I figured out what was going on in my body, I took action - I really pushed, and I got results. The sad story is actually that I lived with pain and discomfort for 30 years that was explained away as normal and part of “life as a woman” and that’s the reason I talk about this so much because we need to get rid of the taboos around periods and pain and start making sure the medical and research community start finding solutions.
My disease was serious enough that once I got a diagnosis I got surgery in under a year (many wait years and years), but the diagnosis made me realize that for almost my whole life, basically from the time I was a teenager, the difficulties I’d been having could mostly be tied back to endometriosis. Extremely painful and heavy periods, migraines that started in my mid 20s, extreme exhaustion and anemia, a burst ovarian cyst in my early 30s. I can see dozens of examples where I went to the doctor, and nobody knew how to put together that the root cause of everything was endometriosis.

It's not like I think doctors are being malicious, but they're honestly not taught about it. At least 10% of people with uteruses have endometriosis, so how are you not taught enough about this? My doctor told me he could get paid more to deliver a baby vaginally than to do a five-hour surgery on endometriosis. There's no reason for people to go into this field, so there aren’t enough advances being made.

My organs were unrecognizable by the time I had surgery – it was just a big mass of gunk. I think partially I have a high pain threshold and a high pain tolerance, so I made it a lot longer than other people would have but even that first time when I went to the hospital because I was in so much pain, I only went in because I thought it would be stupid if I died. Not because I thought “I can't handle this” – because I didn’t want to die. I think in general women’s pain is minimized and we think, what's the point? Going in just for the pain doesn't seem to make sense. The only reason it made sense was to make sure I wasn't dying.
No wonder people lose hope and get discouraged and feel like giving up. If I hadn't done my own research, and then decided who I wanted my doctor to be, and then made a pain in the ass of myself until I got in to see that doctor, I would probably still be in pain. I did not have a pain-free day for over 6 months, all while being extremely anemic and was bleeding nonstop. There were moments when (I am sad to admit) I thought “I wish this was cancer because then maybe they would DO something!” It wasn’t OK, and it wasn’t normal, but we don't talk about periods. It's gross. Right? I just wish people would talk about it. I wish people would make sure there’s research dollars going towards helping those with endometriosis and that the education overall to medical professionals is better, so there can be empathy when you get in and start asking for help.

And I want people to know that they know their body best. If you don't like when a doctor says something, it's not non-negotiable. You have the ability to ask for what you want, and to ask for a second opinion. I've had a full hysterectomy now - they took out an awful lot of stuff in my body so that I could not be in pain all the time, but the disease is likely still there and I’m still going to keep talking about it." 2/2

"My endometriosis diagnosis came shortly after my ADHD diagnosis, when my disease flared out of control and landed me in the ER. I actually feel like I'm one of the lucky ones, because once I figured out what was going on in my body, I took action - I really pushed, and I got results. The sad story is actually that I lived with pain and discomfort for 30 years that was explained away as normal and part of “life as a woman” and that’s the reason I talk about this so much because we need to get rid of the taboos around periods and pain and start making sure the medical and research community start finding solutions.
My disease was serious enough that once I got a diagnosis I got surgery in under a year (many wait years and years), but the diagnosis made me realize that for almost my whole life, basically from the time I was a teenager, the difficulties I’d been having could mostly be tied back to endometriosis. Extremely painful and heavy periods, migraines that started in my mid 20s, extreme exhaustion and anemia, a burst ovarian cyst in my early 30s. I can see dozens of examples where I went to the doctor, and nobody knew how to put together that the root cause of everything was endometriosis.

It's not like I think doctors are being malicious, but they're honestly not taught about it. At least 10% of people with uteruses have endometriosis, so how are you not taught enough about this? My doctor told me he could get paid more to deliver a baby vaginally than to do a five-hour surgery on endometriosis. There's no reason for people to go into this field, so there aren’t enough advances being made.

My organs were unrecognizable by the time I had surgery – it was just a big mass of gunk. I think partially I have a high pain threshold and a high pain tolerance, so I made it a lot longer than other people would have but even that first time when I went to the hospital because I was in so much pain, I only went in because I thought it would be stupid if I died. Not because I thought “I can't handle this” – because I didn’t want to die. I think in general women’s pain is minimized and we think, what's the point? Going in just for the pain doesn't seem to make sense. The only reason it made sense was to make sure I wasn't dying.
No wonder people lose hope and get discouraged and feel like giving up. If I hadn't done my own research, and then decided who I wanted my doctor to be, and then made a pain in the ass of myself until I got in to see that doctor, I would probably still be in pain. I did not have a pain-free day for over 6 months, all while being extremely anemic and was bleeding nonstop. There were moments when (I am sad to admit) I thought “I wish this was cancer because then maybe they would DO something!” It wasn’t OK, and it wasn’t normal, but we don't talk about periods. It's gross. Right? I just wish people would talk about it. I wish people would make sure there’s research dollars going towards helping those with endometriosis and that the education overall to medical professionals is better, so there can be empathy when you get in and start asking for help.

And I want people to know that they know their body best. If you don't like when a doctor says something, it's not non-negotiable. You have the ability to ask for what you want, and to ask for a second opinion. I've had a full hysterectomy now - they took out an awful lot of stuff in my body so that I could not be in pain all the time, but the disease is likely still there and I’m still going to keep talking about it." 2/2

"I live with Fibro and chronic back and neck pain from a car accident. For a long time, it was not manageable. In 2002, ...
07/19/2021

"I live with Fibro and chronic back and neck pain from a car accident. For a long time, it was not manageable. In 2002, I couldn't take care of myself anymore, so I moved back to BC to live with my parents while I figured out what to do. I did a 14 month pain management program that taught me how to manage the pain, instead of the pain managing me. The program was expecting me to go in five days a week like others, but the most I could do was three days a week because it was just so tough for me. I was on strong painkillers for chronic back and neck pain. Your body slowly get used to the dose and then the pills aren't working as well anymore, so they increased the dose and it creates a cycle.

My grandma had told me that I lost the light in my eyes from the painkillers and that told me that I needed to make a change. I made a decision and said, ‘I'm not living like this. I'm not myself anymore’. When I discussed it with my doctors; they wanted to put me on other meds to help me come off the painkillers - and then of course I'd have to come off those meds too. I said, ‘nope - don't give me more meds, I'll just come off the pain meds on my own’. I would arrive at the pain program green and would need to run to the bathroom to throw up. But, I would come right back say, ‘what stretching was I doing when I left?’ It was the hardest thing I ever had to do, but it was so worth it. My grandma recently passed away…but she got to see my decision to do something about my pain. I’m glad she spoke up. Now with my Fibromaylgia pain, I'm proactive. I don't wait until I have a really bad day to do something. Every day, I have a routine that sets me up to manage. I'm going to have pain - so let's make it the least amount of pain possible.

By three o'clock my fatigue level is really high. So, I choose not to go out in the evening as it takes me two to three days to recover. My doctor also told me that I wouldn't be able to work full time with the Fibromyalgia and chronic back pain. Let me tell you, managing my pain is a full time job! But, I want to feel like I am giving something to society, so I created a way that I can work part time by working for myself by creating my own schedule.

I've had doctors who have just been nasty too; especially back when I was newly diagnosed because there was so many of them who didn't believe Fibromyalgia was real. It’s changed now. We now know what it is and how awful it is, and how many people are experiencing this, but there's still that stigma. I didn't want to talk about it to anyone because of what their reaction would be. You know, I would have coffee with my friends and they would see that Sue, and think I'm having a good day; and I come home from coffee happy – but exhausted. Then my husband would see the exhausted Sue. I didn't want people to see me that way, but well, at the same time I wish they could, so they could really understand how those few moments when we’re at coffee isn't exactly how life is.

There has been a lot of learning curves. I'm talking more about it on Facebook now and I’ve received messages saying, ‘I have it too, but I don't talk about it’. And that's when I decided that it’s time to talk about this and not be upset about the non-believers or what they're going to say. Just take the positive because there's so many of us out there. And we need each other."

"I live with Fibro and chronic back and neck pain from a car accident. For a long time, it was not manageable. In 2002, I couldn't take care of myself anymore, so I moved back to BC to live with my parents while I figured out what to do. I did a 14 month pain management program that taught me how to manage the pain, instead of the pain managing me. The program was expecting me to go in five days a week like others, but the most I could do was three days a week because it was just so tough for me. I was on strong painkillers for chronic back and neck pain. Your body slowly get used to the dose and then the pills aren't working as well anymore, so they increased the dose and it creates a cycle.

My grandma had told me that I lost the light in my eyes from the painkillers and that told me that I needed to make a change. I made a decision and said, ‘I'm not living like this. I'm not myself anymore’. When I discussed it with my doctors; they wanted to put me on other meds to help me come off the painkillers - and then of course I'd have to come off those meds too. I said, ‘nope - don't give me more meds, I'll just come off the pain meds on my own’. I would arrive at the pain program green and would need to run to the bathroom to throw up. But, I would come right back say, ‘what stretching was I doing when I left?’ It was the hardest thing I ever had to do, but it was so worth it. My grandma recently passed away…but she got to see my decision to do something about my pain. I’m glad she spoke up. Now with my Fibromaylgia pain, I'm proactive. I don't wait until I have a really bad day to do something. Every day, I have a routine that sets me up to manage. I'm going to have pain - so let's make it the least amount of pain possible.

By three o'clock my fatigue level is really high. So, I choose not to go out in the evening as it takes me two to three days to recover. My doctor also told me that I wouldn't be able to work full time with the Fibromyalgia and chronic back pain. Let me tell you, managing my pain is a full time job! But, I want to feel like I am giving something to society, so I created a way that I can work part time by working for myself by creating my own schedule.

I've had doctors who have just been nasty too; especially back when I was newly diagnosed because there was so many of them who didn't believe Fibromyalgia was real. It’s changed now. We now know what it is and how awful it is, and how many people are experiencing this, but there's still that stigma. I didn't want to talk about it to anyone because of what their reaction would be. You know, I would have coffee with my friends and they would see that Sue, and think I'm having a good day; and I come home from coffee happy – but exhausted. Then my husband would see the exhausted Sue. I didn't want people to see me that way, but well, at the same time I wish they could, so they could really understand how those few moments when we’re at coffee isn't exactly how life is.

There has been a lot of learning curves. I'm talking more about it on Facebook now and I’ve received messages saying, ‘I have it too, but I don't talk about it’. And that's when I decided that it’s time to talk about this and not be upset about the non-believers or what they're going to say. Just take the positive because there's so many of us out there. And we need each other."

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Ottawa, ON

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