Hi friends, long time no write!
Let's face it, I'm woefully behind on blog posts. This is for two reasons: 1) my hands are killing me thanks to some kind of mystery arthritis that none of my doctors are too concerned about, despite its significantly affecting my ability to type, cut food, etc., funtimes always. And 2) I have such a backlog of posts going I barely know where to begin! The first I can't seem to do much about right now, but the second I can - so let's get to it!
Firstly, that 4th post in my "A calmer mind" series (that is so long ago you've all forgotten about it by now), well...that isn't going to happen. Moving on! Secondly, it's long past time I pull together the results of healthcare experiences survey. That's what I'm gonna do right now so I can share it with you, and move on to hopefully posting some more frequent but shorter (and thus hand-friendly!) blog posts again.
Thank you so much to everyone who completed the survey. I was amazed at the response it got, and was surprised by some of the answers and the ways they did and didn't match up with my own experiences. Please note the responses were completely anonymous and did not contain any identifying information (such as names, email, etc.), though I have my suspicions about a couple of them being friends of mine I did not ask/confirm whether they were. I also did not ask for people to submit info about their specific health conditions, as I wanted to focus more on their healthcare/practitioner experiences than their specific diagnoses. (Please forgive any typos or redundancies I've overlooked - I tried to catch them all, but I've been having some mild cognitive issues and it's more difficult than usual for me to focus and catch these details!)
Let's start with some quick demographics about the responders...
22 respondents, all female.
Age (average): 34.7 (median 35.5).
Length of illness (average): 13.6 years (median 14)
Is it any surprise that all respondents are female? Not to me. I'm sure it's partly skewed to my readership, but have you noticed that most of the people you know with chronic illness are women? I only know a couple men who have been struck with significant chronic illness, but literally DOZENS of women. Most of them developed it in their early to mid 20's, and sadly, most have not had significant recovery since getting ill - it's completely derailed their plans and dreams for careers, having children, building a support system and community, saving for retirement, etc. - all those things you're supposed to be spending your prime working years doing are completely shelved for a lot of us. Those who are lucky enough to have supportive family or spouses manage, but it's been heartbreaking and scary for me seeing how much some of my single chronically ill friends (especially those with less family support) have had to struggle to survive. It's practically an epidemic of chronically ill young women, and nobody seems to be talking about it.
- In relationship: 7 (1 polyamorous) [I'm assuming these are non-cohabitating, but I realize that wasn't too clear in my form]
- Single: 6
- Married: 5
- Co-habitating/Common-law: 4
- USA: 13
- New York: 1
- Oregon: 1
- California, USA: 2
- North Carolina, USA: 1
- Washington DC, USA: 2
- Georgia, USA: 1
- Virginia, USA: 1
- Unspecified: 4
- Canada: 6
- British Columbia: 4
- Saskatchewan: 1
- Unspecified: 1
- UK: 2
- Australia: 1
Health status self-identification
- Living with chronic illness: 20
- Disabled: 11
- Terminally ill: 1
- Living with mental illness: 12
- Supporting a chronically/mentally ill partner: 2
I have to point out the significant overlap of mental illness with chronic illness and disability - just over half of respondents also have concurrent mental illness with their chronic illness. Obviously a whole other (very complex) topic!
When it comes to having a general practitioner ("GP", also known in some places as primary care physician or "PCP"), 18 of the 22 have a GP (3 don't and one didn't answer). Of those 18, the length of time each person has had their GP broke down as:
- Under 1 year: 7
- 2-5 years: 6
- 5-10 years: 2
- Over 10 years: 3
I found it very interesting that despite the average length of illness being 14 years, that the bulk of respondents hadn't been with their GP for very long. I'm not sure if that speaks to people moving around a lot, difficulty accessing GPs (which was my personal situation), or some other factor.
The respondents as a group see a variety of specialists, I'll list them from most commonly seen (with number of respondents who listed them) to least, highlighting those that are most common among respondents. Note: one reported to have no team, and one reported having an inadequate team. (I meant this question to be for MD specialists, but some other practitioners were included, so where appropriate I've moved those to the other practitioner section and made sure they're not duplicated.)
- Obstetrician/Gynecologist (OB/GYN): 10
- Psychiatrist: 9
- Neurologist: 8
- Rheumatologist: 7
- Allergist/Immunologist: 6
- Gastroenterologist (GI): 6
- Ophthalmologist: 6
- Ear, Nose, and Throat (ENT): 5
- General Surgeon: 4
- Endocrinologist: 3
- Pain management Doctor: 3
- Cardiologist: 3
- Internist: 2
- Dermatologist: 2
- Neurosurgeon: 1
- Functional/Integrative MD: 1
- Lyme specialist: 1
- Medication manager: 1
- Sleep specialist: 1
- Consulting Physician: 1
- Orthopedic surgeon: 1
- Orthopedist: 1
- Audiologist: 1
- Hematologist: 1
The number of respondents seeing OB/GYN's came as a bit of a surprise to me, though I did not ask how many have had or tried to have children, so I can't tell if that is due to pevlic/vaginal issues or childbearing/pregnancy. I was also pretty surprised to see how common Psychiatrists and Neurologists are - I'm sure the explanation for this is complex so I don't want to guess at it, but I wonder if the similar number is a matter partly of neurological issues causing cognitive and emotional symptoms (note: those aren't necessarily the same people seeing both practitioners, so just thinking out loud here - unfortuantely the way the data is spit into Google Docs isn't the easiest to evaluate).
Other practitioners people see include:
- Physiotherapist: 9
- Counselor/RCC/CCC: 6
- Massage therapist/RMT: 6
- Acupuncturist: 6
- Psychologist: 5
- Naturopath: 2
- Osteopath: 2
- Social worker: 2
- Chiropractor: 2
- Reiki/Energy work: 1
- Occupational therapist: 2
- Podiatrist: 1
- MLD (manual lymph drainage) therapist: 1
- Biofeedback: 1
- Dietician: 1
To me that reads as a lot of seeking support for mental health and pain management issues, but just making assumptions there!
Satisfaction with practitioners
Okay, now that we're done with the breakdown of who everyone is seeing, let's move onto how they feel their experiences with these practitioners rate. Surprisingly to me, because I've had a real struggle with this myself only having finally found a GP this year after 17 years in this city, many people actually have and are happy with their GP/PCP. Most respondents rank their GPs as exceeding their expectation, very good, or good. Only a few are dissatisfied with the care they're getting. Three reported not having a GP, which is something that in my opinion should never happen when someone has chronic health issues! When it comes to specialists, very few have found theirs exceeding any expectations, but most rated theirs very good or good, with a few mediocre but none terrible. Other practitioners ranked very similarly to specialists.
The bulk of respondents felt their GP and their "other" practitioners treat them with respect, listen to them and believe what they say about their bodies, treat them as a partner in care, care about their wellbeing, and generally do their best to provide adequate and pleasant care. This section is one place where specialist care lagged behind by about 25-30% vs. GP's and other practitioners. Respondents specifically flagged that they felt their specialists did not respect them and talked down to them more, didn't seem to care or empathize as much about their condition or wellbeing, made them feel rushed in appointments or like they're an annoyance, and overall felt lower levels of trust towards, and higher levels of anxiety about seeing them. Whereas I was surprised by the positive response about GP care, I was equally surprised and a bit sad that the response about specialists aligned so closely with my own experiences.
I had a few interesting comments when it comes to specialists as well - a few respondents had been prematurely discharged from programs or as a patient when their health issues were far from resolved and left without ongoing care. Others stopped going back to their specialists because their experiences were so negative. (I've definitely been there myself, so no judgement.) One noted that it was too difficult to get in to see their specialist in a timely manner when having more critical issues - this is something that seems to be a real problem at least in Canada, there's often no middle ground between waiting 3+ months for a specialist appointment and going to the ER. Another noted they'd been discouraged from researching their health condition...so much for becoming an active participant in your own healthcare! As for GPs, one commented that their GP lacks the time it would require to really understand their condition, another that their GP was struggling to manage their medications, and another said their care was hampered by local laws - clearly GPs are working within some tight constraints that are less than ideal.
Experiences around mental health
On the whole, I was surprised to discover that respondents felt a fair amount of support around mental health with all three types of practitioners, but especially their GP's (with specialists only lagging slightly). One person said their GP worked with their psychiatrist directly, but at the other end of the spectrum, two others that their GP did not address known mental health issues. It seems like all the advocacy and campaigns around being proactive about mental health have been succeeding on the level of primary care!
There was unfortunately a higher number of negative experiences with specialists (more than double those with GPs or other practitioners) in terms of having physical ailments blamed on mental health issues, using that as an excuse not to provide what respondents felt was adequate care, and also labeling respondents with mental health issues they did not feel they actually have. Specialists also ranked much higher when it comes to shouting at patients in their appointments (they were the only type of practitioner reported as doing this), ridiculing or belittling patients in appointments, silencing patients who are attempting to describe how their illness is affecting their lives, and minimizing their illness or suffering. Unsurprisingly, respondents feel the least comfortable disclosing mental health issues to their specialists.
Some of the most shocking comments I got were on the topic of specialists and mental health - I will let these ones speak for themselves:
"[My specialist s]aid I should leave my partner and go on permanent disability indefinitely and I wouldn't get better."
"I once had a rheumatologist LOOM over me and angrily demand to know why I'm not working. Oh yeah, I prefer spending all my time hanging out at hostile doctors' offices as opposed to being out there gainfully employed and social. I'm sure it has NOTHING to do with being chronically ill."
"Suggested that I was ill because I didn't really want to get well; lectured me on Hippocrates when I said I didn't believe my illness to be psychosomatic (as she was implying)."
"...this survey made me wonder - WHY HAS NO ONE EVER ASKED ME ABOUT MY MENTAL HEALTH while dealing with serious symptoms and non-stop medical investigations?!!? I get that treatment through my employer - thank goodness. I'm just in shock now. Thanks for the eye-opener."
And because there's always a mix, one positive comment was: "My psychologist and other specialists who know about mental health stuff have all been awesome. I'm lucky!"
Sad that is seen as lucky or rare, but I try to remember that the practitioners are also working within a system that can make it very difficult for them to provide care and remain empathetic. I got the sense that other practitioners (such as physiotherapists, massage therapists, chiropractors, etc.) and respondents did not discuss mental health much unless that was their area of care.
Overall, the responses to my survey were mixed, more so than I expected, with a slight skew to the positive for GP's and to the negative for specialists. The open comments section I left at the end of the survey brought more depth to the conversation:
"Overall, I've been utterly failed by my healthcare practitioners, whether it be directly by them, or by the system being wholly insufficient for meeting my needs."
"If you are outside the box in terms of a quantifiable, definable disease you are SCREWED. The doctor will initially ride in on his white horse to save you, because he believes he's certainly The Chosen One to do it. And then when the going gets rough, the disease proves elusive, and the ego takes a few slings and arrows, you the patient are suddenly a problem. A incarnate reminder of his failures. So the hostility begins and the patient is invariably called mentally ill, particularly if the dynamic is male doctor-female patient. It happens so, so often that it's either something in the personality of most doctors or something acquired in medical school. It's left me deeply [anxious] about doctors and doctor appointments, which only confirms to them that I'm crazy. A vicious cycle!"
"I feel fortunate that I have practitioners I really like and trust. But then -- I've chosen to go out of network (self pay) for the important ones. (Spent most of my life savings by age 50 and had some help from family.)"
"It's a royal pain to have to change [doctors] all the time because of health insurance, and the copays are outrageous in most plans that are affordable."
"I feel Im one of the lucky ones who've found a PCP that cares enough to listen, not make assumptions, and advocates for me. Before that my other doctors blamed all my health symptoms on stress (good and bad), lack of exercise, depression, excelling at school (claiming that being a "perfectionist" causes my pain and gut issues, hypersensitivity, my menstrual cycles, being a woman). This happened mostly while I was in college. I've noticed that as I get older, doctors and specialists listen to me and take me more seriously."
"I find that healthcare practitioners are so overworked due to the fee-per-service structure. If they were paid a salary with an expectation of workload to obtain that salary, then I feel they would be better able to see and care for their patients. I've heard that the "one item per visit" is becoming standard, which truly scares me as I don't know how a practitioner will ever find the cause of illness when not allowing themselves to approach the patient holistically. Further to that - there is far too much segregation between the holistic therapies and the western medicine therapies. It is time that we bring them all together -- the best of all -- under the blanket of our medical care system."
"In my general experience... Western medicine has been useless at best, destructive at worst, unless we're talking about acute infection or illness for which they can prescribe medication. Alternative health care practitioners may or may not be effective or make a difference in my health, but they nearly universally listen, ask questions, seem to care, and take more time."
"I have a number of unusual comorbid conditions. It has taken me a very, very long time to assemble my current care team, and they are outstanding. Before them, I saw a lot of insensitive, demeaning practitioners in every field. I suffered a great deal, and became sicker because they couldn't pay attention to what was really happening with my illness. Now that I've got my A-team, I don't want to let any of them go."
There's no doubt that it's difficult living with chronic illness, especially when compounded with mental illness. In some areas, care seems to be living up to the needs of patients, especially when it comes to primary care. In others, it's failing miserably - especially when it comes to specialist care for complex patients. Surely a consequence of the disjointed way medical care treats bodies as a set of systems rather than a whole, and also of the lack and outdated organization of resources in a system that is overburdened. There's still room for improvement (especially when it comes to specialist care), and some women with chronic illness in the so-called "prime" of their lives are falling through the cracks.
Do you have something to add to this conversation? Please do comment below!
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