Being Able to Do the Things that Make Me Happy
Jade is a 47-year-old Canadian woman who has lived with persistent pain since she was a child. Pain has impacted her in different ways throughout her life, particularly in terms of how much she has been limited by her pain. So, for Jade, living well with pain is a relative experience—relative to when things were at their worst. During some of Jade’s most challenging times, she relied on the support of a wheelchair and dealt with debilitating side effects from the medications she was taking. Roughly 15 years ago, Jade was diagnosed with lupus and Ehlers-Danlos syndrome (EDS). Getting these diagnoses and starting some specific medications have helped Jade find her way to a relatively better place. She also has extensive and diverse supports throughout her life that allow her to stay engaged in her life in the way that she wants to. And for Jade, this engagement is what defines living well; even when things are hard, if she is able to do the things that matter to her, she sees herself as living well.
Anything is Better than That
Understanding Jade’s experience of living well requires an understanding of her relative experience of not living well. Jade shared with me:
There were many days where I just couldn’t even move or get out of bed or anything. In those times, I kind of got really down and really frustrated, and I also didn’t always have the answers to what was wrong with me. Every doctor, a lot of doctors, were dismissive, and they couldn’t figure out what was wrong.
Jade had times where she was basically sick all the time and would need a wheelchair if she had to go any long distance. On her commute to work, she would have to stop part way and nap in a parking lot because of the sedating effects of her medications.
It was after the birth of her son, when her pubic bone had separated so much that she could not walk, that she got her EDS diagnosis. EDS is a genetic condition that affects connective tissue. There are 13 different types of EDS and joint hypermobility is observed across all types. Jade presented with this hypermobility from a young age, and she shared some of her early life experience with me:
I had been going to physio since I was about eight or nine because my kneecaps would sub lux and my one shoulder would sub lux, and I also distinctly recall I used to sit with my legs in a W, my legs behind me, and I remember having to go to an orthopedic surgeon and him saying, if you don’t stop sitting like that we’re going to have to operate on your legs. And so I was super flexible and having all these subluxations but nobody could tell me why and I went to physio to have therapy for the pain but nobody said you should be bracing your joints when you’re doing sports or taping, none of that was really known at the time so I’ve done all this damage to my joints because, of course, being flexible I was a gymnast, I was a figure skater, I trashed my body doing party tricks with my double jointed-ness.
Even after finally getting the EDS diagnosis, however, Jade still experienced barriers to care. She told me about her experiences with being diagnosed:
I always suspected I had lupus, but nothing was showing up at the same time on the blood work until after 10 years of my diagnostic odyssey, finally everything started showing up at once, and I got the confirmation that that’s what I had. And when I was first diagnosed with Ehlers-Danlos, lot of doctors still had no idea what that was.
Since Jade was diagnosed, EDS has been added to the Observed Structured Clinical Examinations for physicians, which has slowly led to a greater awareness about the condition, but the course of Jade’s life was undoubtedly influenced by her healthcare providers not being aware of this condition when she was young.
What Better Looks Like
As I have been emphasizing, living well for Jade is rooted in comparison to when she was not living well. She wrote to me:
[Living well] is relative to periods when I was not thriving but rather just surviving. Even though I still have daily pain, as long as it is not as bad as it has been in my worst periods, then in my mind, I am doing well. I’m doing well if I can work, attend school, and do things that make me happy, like socializing, spending time with family, and travelling. I no longer need a handicapped parking decal, and I don’t need to take a wheelchair if I will be walking longer distances. I still have days where the pain is so bad I can’t get out of bed, and in these moments, if they last more than a day or two, I feel down about how my pain limits me, but I remind myself that I can still accomplish more in a year than most people who don’t have the same limitations and I should be satisfied with what I have done.
Being able to do the things that matter to her is central to living well for Jade, and she works incredibly hard to make a life that involves the things that make her happy possible.
What Makes Living Well Possible
There is a lot in Jade’s life that is in place to support the management of her pain. When I reflected to her that it must take a considerable amount of time to do all the things she does, she responded to me: “Yeah … but it all becomes kind of part of the routine and so it doesn’t really.” She does not spend a lot of time thinking about what she is doing to manage pain because everything she is doing is a normal and habitual part of her daily life. She simply puts one foot in front of the other and does what needs to be done.
Her Husband and Her Son. Jade lives with her husband and her teenage son, and they are both a part of her support team. She shared with me: “My supportive husband and son help with cooking and cleaning so I can just focus on work and school. They take care of me when I am suffering.” Spending time with her family is also one of the things that matters most to Jade and defines living well, so being able to enjoy moments with her husband and her son is an important part of living well.
A Healthcare Team. A team of different healthcare providers is another important support for Jade. Weekly massage therapy treatments are essential for her. She explained to me:
It’s a medical necessity, if I don’t have that, when my massage therapist goes on vacation, I suffer, or when I go on vacation and I don’t have my massage therapist and my chiropractor and the guy that does my back injections, I suffer.
Jade also does weekly physiotherapy and bimonthly trigger point injections or prolotherapy. In addition to her family doctor, she sees a range of different specialists, including a rheumatologist, ophthalmologist, neurologist, gastroenterologist, otolaryngologist, and a pain specialist. These physicians, along with her pharmacy team, support her in optimizing her medication regimen.
Medications and Supplements. Two medications have been especially beneficial for Jade. She suffered “from migraines for a few years to the point where [she] was having at least 15 or more a month,” and for two years, she cycled through different medications trying to reduce the frequency of her migraines. Now, she told me: “I’m on monoclonal antibodies and those have been working really well and even though I still have between two and four a month, it’s so few and far between that it just feels like I don’t have migraines anymore.” After she was diagnosed with lupus, one of the medications she tried was prednisone, and it has really helped. She said to me: “Prednisone made the biggest difference. Everything that I had—like I would get psoriasis on my scalp, I’d get eczema on my eyelids—all of that went away.”
Jade also uses supplements, electrolytes, and ointments to support her in living well (see Figure 1). Tiger Balm is a particularly important ointment for her. She shared with me:
The Tiger Balm is always at my bedside, and it works so much better than most other rubs, and I think it’s just because it distracts your brain from the pain and even the smell of it, at this point after using it for so many decades, is like a placebo effect for me … I smell it and it’s okay, it’s taking away my pain.
Functional Tools and Adaptive Supports. Jade has an expensive bed that has improved her sleep and plays an important role in her living well. She shared with me about it:
I distinctly remember one day being really frustrated and being like, okay, I have to make some concrete changes in my life if I’m going to be able to live at all. So, I bought a $6,000 mattress that’s super comfortable and special ergonomic pillows and that is the number one thing that makes the difference because I wasn’t sleeping. I had an expensive pillow-top mattress, and I’m a side sleeper, but my hips would hurt, and I have to roll over every 15 minutes. So, I wasn’t sleeping at all, and I still do have to toss and turn at night, but I get a much better sleep and that’s really, if when you’re not sleeping, everything else goes to shit.
In addition to her bed, she has made modifications to her work environments in the daytime. She told me:
I have an ergonomic workstation both at home and at work where everything is adjustable, and I have sit-stand desks and … the occupational person came in and set everything up for me and even at home I have a thousand-dollar chair to sit in for when I’m working because I’m sitting so much in the day that it really impacts me.
Jade uses a roller bag, so she does not have to carry anything. She can only wear special shoes, Hokas or Birkenstocks. She uses multiple tools to support pain management, including trigger point roller balls, foam rollers, a transcutaneous electrical nerve stimulation machine, and many heating tools. She elaborated about the use of heat: “I have heated everything—vest, socks, slippers, mattress pad, heating pad at my desk, back belt that can be plugged in at my desk or in the car, heated car seats, even my massager is heated.”
Since getting her EDS diagnosis and understanding the importance of bracing, Jade has braces for multiple joints and KT tape (see Figure 2). She shared a bit about her use of the braces with me:
All the splints and stuff, I don’t wear them every day because my pain comes and goes but even when I go traveling, I bring them all with because at some point in the week I’m going to need one or the other.
Jade also takes regular breaks during the day to stretch and do physiotherapy exercises.
Modifications and Sacrifices. There are various other ways that Jade has modified her lifestyle and made sacrifices to stay engaged in the things that matter to her. She told me: “I’ve had to make sacrifices in my work to ensure my body doesn’t suffer more than necessary.” Jade works as a nurse, and she explained what some of these sacrifices look like:
I really miss bedside nursing so I went into teaching because my body can’t handle the bedside nursing and even just doing one or two days of clinical with students was too much so then I went into a leadership position where I didn’t have to teach clinical. I can work, which is fulfilling, but it’s not necessarily the job that I would choose to do as a first choice.
Jade’s current position at work affords her a lot of flexibility, which is allowing her to balance work and parenthood with a doctoral program. With respect to managing the demands of school, Jade told me: “I work well ahead of the deadlines knowing that anything could happen any day, and I could be out of commission for a week or so.”
One of Jade’s conditions also requires that she largely stay out of the sun, so she wears big hats and has other clothing to protect her from ultraviolet rays. Additionally, Jade has a number of dietary restrictions in place to prevent pain flares, which she said “is probably the most inconvenient part of all of this.” There are many different pieces to the broad foundation that supports Jade in feeling well enough to be able to engage in the things that matter to her. With respect to all of it, she told me:
The modifications that I’ve made to my environment and to my work life have been the biggest helpers, and sometimes when your pain gets better, you get into this mindset where like, ‘Oh, I’m better now and I don’t need to do all these things,’ but then you really see how much they’re helping when you’re in a different environment. If I go to a hotel, for example, there’s no bed that is as good as my bed.
The Cost of Living Well
The broad and diverse range of supports that Jade has access to are made possible by the Canadian healthcare system and her extended health benefits. With respect to the cost of all her supports, she said to me:
Luckily most of it is covered through my benefits, but if someone didn’t have insurance and they had the same kind of symptoms as I did, they wouldn’t be able to get the services that keep me going every day.
She elaborated further about the importance of the healthcare system and her extended health benefits:
The fact that we have this social system where we get our medical care covered and our hospital expenses covered and that we can then have these extended benefits as well and I’ve got them through my work and my husband’s work, that’s a huge facilitator. I go to school in the States online and so we often have conversations about the medical systems because we’re in a medical program, but I just think there’s no way I could ever live there between myself and my husband, who’s diabetic. We would never be able to afford the medical care that we need in the United States.
Jade put it succinctly when she said: “I’m really fortunate that I have really good medical coverage because my medical expenses are through the roof.”
Advocating for Herself
In addition to the financial resources necessary to build this foundation of living well, Jade identifies her education as an important factor. She told me:
I’m a nurse, so I can navigate the medical system pretty well, but I can’t imagine what that would have been for somebody who isn’t as resourceful as I am because I had to really advocate for myself to get services, to be believed that my pain was real.
Even with her education and qualifications, Jade has had repeated experiences with healthcare providers where she felt dismissed and like they did not believe her. Yet, she still emphasized to me: “Definitely my education has helped tremendously and my work experience and the connections that I have.”
Determined to Move Forward and Live for Today
With everything that Jade does to manage pain on top of working, parenting, and going to school, she is busy, and keeping busy is an intentional part of her strategy. She shared with me:
I’m constantly staying busy, and I don’t really do well with idle time because I think I just have to keep moving forward and keep moving period, just stay busy and focus on other things and not focus on my pain, just like put it aside, it’s all distraction and avoidance. And distraction though is really helpful with pain, we know that, so whether it’s sitting and watching TV for 12 hours or working on a dissertation. There are different forms of distraction.
Staying busy not only distracts Jade from her pain, but also from feeling down or discouraged about how it is impacting on her life. She is determined not to wallow. She told me: “I’m just going to pull my socks up and move on and try to live my best life and not just lie in bed and cry about my circumstances.” On the days where pain keeps her in bed, Jade focuses on remembering that this will pass. Making her life what she wants it to be is a disciplined practice for her.
Jade’s determination around moving forward is rooted in her desire to make her life the best that it can be. She explained to me:
I think the most substantial part of ‘living well with pain’ is that I know things can change quickly, and I can have very little quality of life, so I live for today. I take trips. I bought a boat. I go diving even though it may hurt. I do the things I love so that my pain doesn’t define or restrict my life.
Jade has not always approached her life in this way. She shared with me about how the change came about: “For me, it was just making a decision that I didn’t want to live that anymore, so I was just going to do whatever it took and whatever it cost to put the structures in place to be able to have a better quality of life.”
It is Really Hard
Even though Jade identifies as living well, she acknowledges how challenging it is to live with ongoing pain. She told me: “I wouldn’t wish anybody to have to live with daily pain.” When I asked her if she had any advice for people who are struggling with persistent pain, she humbly said to me: “I don’t know if I could give anyone advice because everybody’s experience is so different and it’s their own and it’s subjective.” She made a point, however, of speaking to the mental health aspect of living with pain being a significant challenge for many people, and she emphasized the importance of self-advocacy. Her suggestion for others was: “Advocate for yourself—that’s the only way to kind of get what you need—and really try to find a good team of people who will support you.” This self-advocacy work and building a support team is what Jade has done—and continues to do—in pursuit of a fulfilling life that is not defined by her pain or her limitations.
- Image submitted by Jade as part of her response to the question, what does “doing better” or “living well with pain” mean to you? Jade told me: “All of it is kind of required, if I’m without any of those things I wouldn’t be able to get through my days.” ↩︎
- Image submitted by Jade as part of her response to the question, what does “doing better” or “living well with pain” mean to you? Braces for multiple joints are a part of living well with EDS. ↩︎