Women’s experiences of navigating chronic pain within the context of living with an episodic disability

The power of being dismissed

Overwhelmingly, women experienced gendered treatment within the healthcare system and reported that they were frequently dismissed by their healthcare providers, most often physicians. To a lesser extent, nurses in hospital disregarded women’s symptoms, which was problematic when they controlled access to medications. Being dismissed occurred at many points, including while seeking testing and diagnoses, treatment for symptoms, or referrals. When women experienced dismissive behavior, it led some to question their own judgment or knowledge of themselves, “When a physician cannot find inflammation present in the blood or there isn’t anything tangible as an identifier, they automatically dismiss the pain as psychological.” Some found these experiences to be triggering. Feelings of shame and embarrassment were also evident when no biomedical markers could “prove” their pain, as suggested in this quote:

It’s easier to put the onus on the patient and say, “well we couldn’t find anything wrong with you” . . . Then the patient feels that instead everything is turned on them. So then, you know, the patient feels, “well they can’t find out what is wrong with me”; then the patient feels shame, you know, there’s nothing concrete.

The response of feeling gaslit or being triggered should not be surprising given the high number of women who disclosed a previous traumatic or abusive event in life.

Most women in this study experienced patriarchal or gendered communication from their physicians. In some instances, this included speaking to their male partner (or parent of a former pediatric patient) rather than addressing the woman directly during specialist appointments. The sexist communication was often overt, particularly for one woman who required her physician fill out government forms that would provide access to disability income supports:

A long time ago, when I was trying to get onto housing and disability [financial support], I had some really terrible doctors who gave me bad advice and they just left me hopeless. They were old school doctors which, you know, I can’t believe this one psychiatrist even told me “you’re better off marrying a rich man than getting on disability.” And I’m like, “are you kidding me? Don’t say something like that to a client.” I’ve had some bad experiences with some doctors.

Other women in the study had their pain experiences dismissed and blamed on them being overweight:

I actually lost 150 lbs—my doctor told me that it would help me so much with my pain, which wasn’t exactly true. Because I’m still in the same amount of pain, but I did lose a lot of weight to try to help that.

Generally, women reported that they did not have the energy to address these inappropriate comments because they were already dealing with pain and other symptoms caused by their concurrent episodic disability: “You know, I am a fighter. I mean I feel like that’s the only way we get change. It’s just I don’t have any energy left to fight at the moment.” Others feared the consequences that challenging their healthcare provider would have on their care.

The quality of healthcare received and how it was communicated also impacted participants’ experiences of chronic pain within the context of living with an episodic disability. Participants’ encounters with healthcare professionals, particularly in acute care settings, led to frustration and anger, as one woman shared:

And one doctor there who was an internist said to me two days in a row, well you have lupus why would you expect to get better? If I wasn’t so sick on that bed, he’d have lost a body part.

This type of dismissal affected participants’ plan of care and made it more challenging to get their pain treated, “You kind of fall through the cracks. And unless you have a huge gaping wound or something that they can see, it’s really hard to be treated for pain.”

All participants sought out healthcare professionals who were effective communicators and had compassionate attributes. When participants had compassionate health providers involved in their care, they had more trust in the healthcare system, even when they could not control pain or other related symptoms. This was primarily because regular providers could see changes, trusted, and respected the women’s experiences when they complained of pain, and had recall of past treatments and their level of success. One woman living with lupus who had a long-term relationship with an understanding and compassionate physician noted:

I had had that same doctor for 20 years, and he understood how my illness worked almost as well as I did. So, like I know the first signs of flaring, and he—we would have a way of communicating where I was able to say this and this, so this is triggering this, and, OK, this was the plan. You know, there was an understated agreement—he had also given me ways of just upping my Prednisone when I needed without actually consulting him.

Where long-term relationships could be maintained with compassionate providers, women were able to be active participants in navigating their treatment and controlling their pain and associated symptoms. As these relationships ended, primarily caused by retirements, women went back into situations where healthcare providers (mainly physicians) were in control.

(Dis)respecting medical advice

Influenced by gendered treatment within healthcare settings, women experiencing chronic pain and an episodic disability navigated the tensions between trusting healthcare providers and avoiding interactions that would not meet their needs. At times, this involved becoming more passive in their own care and deferring to medical advice. As a consequence, women described feeling powerless around being “put on” medications and fearing significant adverse effects, particularly from the use of steroids but followed physicians’ directives hoping for better management of their episodic condition, “I don’t like the way it makes me feel when I first take it, but yet I’m dependent on it. Because if I don’t take it I have a very hard time walking.” Women, often reluctantly, trusted the medications prescribed by their healthcare providers.

Many women attempted to control pain and manage exacerbations of disability by using a variety of natural supplements or vitamins that did not require a physician prescription. For example, the majority of women were open to trying cannabis in an attempt to control chronic pain symptoms, and some were actively using cannabis or cannabidiols. Physicians’ responses to cannabis ranged from supportive to cautious, with some doctors avoiding the discussion entirely. Anticipating or fearing disapproval from their physicians, and also exerting agency where they could, some women did not discuss these self-selected treatments with their physicians, while others were proactive in consulting with their physician as part of their own decision-making, “[I do] my own research and then I discuss that with healthcare providers.” While some women made decisions about their own self-care, a few noted that they would not attempt any medication or supplement that was not approved or suggested by a physician.

Seeking personalized care in an unpersonal system

Women navigated the rigidity of a healthcare system that inherently lacked continuity in care, thus creating instability. Many participants were connected to teaching hospitals, where general practitioners were residents replaced every 2 years. Despite the disruption that this caused, women in this study remained in these arrangements because specialist care was associated with a particular clinic or hospital, and specialists were difficult to access. Those who had healthcare providers retire were disheartened because no one was available to fill the void. For one woman with lupus, chronic pain, and multiple other health concerns, a physician retiring meant that she could not access a variety of needed medications, “The biggest problem when everybody on your team retires is that you have nobody to do [prescribe] medications. So, when you have to go off your 14 medications because nobody can prescribe, that causes issues.” Frustrated by the lack of continuity in care and succession planning, women’s confidence in their ability to manage their health was often eroded.

Healthcare professionals’ practices around pain assessment were another common challenge for women in the depersonalized system. In particular, women reported that pain assessments based on a few questions and requiring women to report their pain on a 1–10 scale were common and limiting. These types of pain assessments were generally ineffective in capturing the everchanging nature of the pain experienced by participants, particularly when healthcare providers were unfamiliar with the woman’s history. While many women reported frustration with these practices, one explained how she attempted to help the nurses conduct assessments that better captured the nuances of her experiences with lupus:

In my case, I find a lot of times when I go into the pre-assessment and the nurse comes in, she’s like, “How’s your lupus, are you stiff?” And I find it so irrelevant to me because stiff is not how I would describe my joint pain. So, often I’ll say “No,” and then they’re like “Oh, good.” But I’m like, “No, I mean my joints hurt a lot but they’re not stiff, and I know what you mean by stiff, but that’s not how I’d describe it.” So, a lot of times I think there’s like a set of questions that they have to ask, but if you don’t fit in those questions, you kind of have to be able to adapt how you’re explaining your pain, or how you’re feeling the pain, you know? My joints just feel like they’re eroding.

Both the language and the structure of standardized pain scale assessments were reported by women as problematic and out of touch with their experiences, particularly when asked to assign a numerical rating to their pain over a longer timeframe (e.g. Thinking about the pain you had in the last 7 days, what number best describes your pain, on average, where 0 is “no pain” and 10 is “pain as bad as it could be”?). For women who never experienced a day without pain, a score of 0 was outside their reality. Others had difficulty even quantifying the episodic nature of their pain. In an effort to make these numeric ratings more meaningful, study participants attempted to interpret their pain score for healthcare providers, as described by this woman:

When I’m talking to a new person or a new doctor about pain and they do the one to ten [pain scale], I’m always like, “Look, here’s how I’m calibrating it. I’m calibrating it with an eight being childbirth.” So, like, my six is still frigging serious, right?

When women in this study rated pain on a numeric scale, these ratings were often lower than their narrative accounts would suggest. One woman’s account of the significant impact of her pain on activities of daily living illustrates this disconnect with her pain rating:

If I’m barefoot, the time to take a shower, it’s too painful. Standing is painful, you know, little things . . . Like cooking, if I’m peeling vegetables I have to sit down. So, I mean that, in terms of the kind of pain—it’s just like it’s everything you do. So, six, seven at worst.

In general, the constant need to qualify and explain how pain was being experienced to new or disbelieving healthcare providers was common and exhausting for women and used up already limited energy reserves.

The “cost” of well-being

Financial constraints were a significant barrier to accessing healthcare not covered by the provincial insurance plan. Women were often interested in accessing care from a wide range of allied health professionals and believed they would benefit from such care. However, these services were not affordable, even with private insurance, due to the high (co)payments required. The list of practitioners that women were interested in accessing ranged from allied health professionals (e.g. massage therapists, psychologists, and physiotherapists) to holistic healers (e.g. acupuncturists, and naturopaths), and even to paraprofessionals (e.g. fitness instructors and personal support workers (PSWs)). Women did not necessarily seek out the same types of treatments or have success with the same type of practitioner, even when they had the same episodic disability. For example, one participant said, “I meditate while I’m getting the acupuncture. I find that it does work,” while another said, “Acupuncture? No, because I heard it’s not good for people with MS, so I just didn’t do it.” When women lacked knowledge about the impact of these therapies on their episodic disability, they were more likely to be interested but cautious, and often unwilling to risk further pain or disability by using these allied health or holistic professionals.

Women who were able to access financial support from government disability programs were more likely to access allied health professionals. Given that finances were a constraining factor for most women in the study, finding a licensed professional who was flexible enough to bill them in way that fit with the conditions of their extended health benefit was critical in securing therapies that women perceived as helpful:

I would go to an osteopath. I call it a tune-up. When I could go to him. He did all three [osteopath, physiotherapy, and acupuncture] and had it billed as physio. If I’d spent the money, I could stay functional enough to work because I’ve had three periods in two years where I could not work. I used to go every two weeks to three weeks. I’d go to physio and we wouldn’t do anything there that I couldn’t do at home. So, all the exercises I could do at home. It was the hands-on stuff. Things like the osteopathic movements that were critical to me. I haven’t been able to get one for a year and a half. I think this headache that hasn’t left for six months might just go away if I could see an osteopath for one or two appointments.

Yet, most women could not afford these therapies. Even PSW services to help everyday needs (such as bathing, exercises, cooking, errands, and housework) were difficult to access. In response, some women hired friends who could provide this type of support to benefit from PSW services in a cost-effective manner, “I have a friend that is a PSW, and she actually comes in once a week and does what my kids can’t do [cleaning, cooking, or helping with bathing].” Occasionally, charitable organizations (e.g. MS Society of Canada) were helpful in providing financial support for housecleaning and support in bathing or other activities of daily living by PSWs. Finally, despite all of the participants describing the need to find ways to cope with fatigue and its impact on pain, only one woman mentioned an interest in working with an occupational therapist, despite their expertise in energy conservation techniques.

Regardless of interest, cost was also a barrier for women being able to access professional support for exercise. As women’s level of disability increased, their convictions about the need for professional exercise support also increased. For example, participants sought out support from physiotherapists or fitness professionals, particularly those who had knowledge of episodic conditions and chronic pain, to preserve or regain ability. One woman shared her desire to work with a physiotherapist to regain function, “Getting the muscle strength back, like exercising, with somebody who could be there with me to guide me. But you know, I can’t afford something like that.” The fear of doing harm or causing more pain through exercise often interfered with regular physical activity. If cost was not a factor, women indicated that they would use professional services to remain active.

Seeking the essentials of living, beyond healthcare

Facing challenges presented in their interactions with the healthcare system, the women in this study enacted their own agency to navigate chronic pain management alongside medical care. They often began with “research” to identify the specific therapies and medications that would best support their own unique approach to managing their episodic condition and, in turn, help with pain. Many of the women described the extensive work done to learn more about their options:

Sometimes, it can be a giant mess and it becomes a struggle—you’re not just struggling to deal with the chronic pain and the illness and the disease and the takedown and the comorbidities and the constant information, you have to become your own doctor, I swear. You’ve got the three years medical school, but you don’t have the certificate hanging on your wall.

While this research included information about disease modifying drugs, women were also eager to try holistic modalities to address chronic pain, including diet, exercise, and other self-care measures.

Various approaches to diet for disease management were mentioned by participants. Although women primarily used their diet to manage episodic conditions, they noted that this also lowered pain levels. The women who discussed diet had done extensive research into different nutrition plans, “I went back to school to become a holistic nutritionist because I wanted to not set off my body with diet, because if I eat acid producing foods my pain goes bananas.” Few of the participants discussed dietary plans with healthcare providers, including registered dieticians or nutritionists. However, for one university student with lupus, the school nutritionist helped to develop a plan to support healthy eating on campus; another student moved out of her family home to have more autonomy with her diet, which she researched herself.

Many of the holistic strategies that women researched and used to treat chronic pain were self-enacted. Getting adequate sleep, taking supplements, conserving energy by scheduling activities, limiting stressful events or people, taking baths, or using hot or cold compresses were all strategies used to manage pain. Other approaches included prayer, mindfulness, meditation, and practicing gratitude. Surrendering to the pain experience was necessary at times, and despite growing more despondent, it was also used as a method of pain management. One participant shared how she came to accept pain as part of her life:

When I’m in really bad pain, or really down—like fatigued, I’ll just cry. I don’t know what else to do. Because I can’t really help myself, I just have to wait it out. But the longer I wait it out, the more the years go by and the next thing you know 10 years have gone by and what the hell did you do with yourself.

These types of self-enacted activities were the most common strategies used to manage pain because they came at no significant cost to the participants. While diet, exercise, and other self-enacted approaches are general health promotion strategies for all, they were seen as essential aspects of living that helped women have control over chronic pain and modifying the course of their disease. One participant described the necessity of these activities:

Self-care now is necessary for survival and self-care could be grooming yourself or eating. Simple showering and cleaning and cooking and socialising and chilling and the 100 other things I’m not mentioning. Those become, I would say essential to living; self-care that some people just take for granted.