Lived Experience: Part 1 —
Serious trigger warning: Frank discussion of health, weight loss, weight loss surgery and eating disorders.
When I first began putting together a roundtable of Health at Every Size® (HAES) experts to discuss the social determinants of health (SDH), several people recommended that it would be valuable to have a similar roundtable with people who have felt the negative impact of the SDH.
It took me months to find the seven participants who volunteered their time to answer a few questions about their experience with HAES and the SDH. My hope is that their input will help HAES experts and advocates to approach the problem of the SDH with help and input from the grassroots level.
I would like to thank all of our participants for being so open and honest about their experiences. Tomorrow, I will share the second part of the roundtable, where they discuss how they would address the SDH and how HAES can be more effective in their lives.
Question 1: What are some of the barriers that you have faced over the course of your life in your efforts at self-care?
I have an aggressive clotting disorder and take blood thinners to keep it under control. Vitamin K counteracts the effects, so I have to be wary of green veggies and fruits. It has been difficult for me to create a balanced diet for myself in which I am getting all the vitamins and nutrients I need to stay healthy. I’ve sought assistance from nutritionists, who I’ve learned are simply glorified diet doctors more concerned with me losing weight than me losing my eyesight or other faculties. It’s very difficult being taken seriously, as my weight looms large in the minds of every professional I’ve met so far.
I grew up poor in a fairly rural community. So as a kid, despite my desire to participate in certain sports, the few things that were offered were not things that I wanted to do, nor was my family able to financially handle the cost of my participation. For example, in middle school I desperately wanted to join the dance team. I was able to scrape together enough money to pay for my costume/uniform and required gear (shoes mostly), but the daily before-school practices meant that my mom had to drive me to school. I know it was difficult for her to afford, and I think she breathed a sigh of relief when I didn’t make the team in high school.
So from an early age, I associated group or team fitness activities with not-belonging on two levels: as a fat kid and as a poor kid. Those kinds of experiences make it difficult for me to seek out fitness opportunities, something I know is essential to my self-care. Being involved in movement that I enjoy helps to alleviate depression, and just makes me feel better all around.
I must say that the first barrier is the culture we live in, where being thin is one of the most important things you “must” do as a women, and for some, as it was for me, it’s even more important than health itself.
I grew up as a fat kid, I wore an adult size 5 at age 9. My father is a doctor, so he took concern at how this was affecting my life, and he took me to a nutritionist.
I know he did this out of love, and my nutritionist always had the best interest in my health. Even so, I began my first diet at 9, and this left a big impression in my mind. I learned that certain foods where bad and that, for me, being a good kid meant sticking to the diet. So every time I failed and came back to the nutritionist office after I gained the weight back, it made me feel like I was a bad kid and a failure. It didn’t matter that I was smart or a great martial artist or talented, I always distrusted all my abilities and felt that if I wasn’t thin I was still a failure.
I went on and off diets ever since, until I turned 25. At 23, I said to myself that I didn’t need the humiliation of going through another appointment with my nutritionist, so I decided to take the matter on my hands and that is when my eating disorder started.
I didn’t think I was doing anything out of the norm until last year. When I really analyzed what I did, I discovered that my behavior was not normal. I was eating very little and I restricted my diet to a certain amount of calories, and I was exercising for two hours a day, six days a week as a way of purging. I skipped meals and in 2010 I ended up binging, until I learned that I needed to stop. So with help I did, I’ve been diet-free since 2010. Still, I get obsessive over exercise and I tend to overdo it. I’m trying to figure out how to keep moving without obsessing over it.
This idea that being thin was the most important thing in my life led me to do things that weren’t healthy at all, I would say that my first barrier is in the culture itself, and our standards of beauty.
My second barrier, perhaps, is the work ethic that I was brought up in.
We live in a world where we value working over resting, so I was the kind of person who would much rather not sleep than fail on my obligations in school. I ended up not sleeping at all, or sleeping just about four hours each day.
And this, I think, had something to do with my weakened immune system. I think that sort of thing keeps a lot of us from resting properly and, of course, keeping us from trying healthy habits.
Third, I must say it’s economic status. Ever since I was diagnosed with Hodgkin’s lymphoma, I’ve said to myself that I have to make my heath a priority. I’m not in poverty; I’m middle class and so far I have insurance, and my family manages to pay a psychologist for me. I’m truly grateful for this.
But ever since I finished my master’s degree, well, I ran out of funds since I’m also unemployed because I still have a weak immune system.
So I live of what my father can give me at the time. I know I need help with my eating habits, since I still have issues with food and movement; I still tend to skip meals and binge sometimes, and I know that I can’t overcome this alone. Where I live, all except one nutritionist focus on weight management. There is just one nutritionist specialized in eating disorders in my town; even so, I can’t afford it, nor I can afford to travel to the USA to San Diego to meet with a nutritionist who manages HAES.
Also, accessing healthy foods is kind of difficult because of the lack of money. Mexico is having an economic crisis, so even when I want to eat better quality foods and avoid chemicals in my personal hygiene products, I can’t afford it all; I have to eat whatever we have around, when we have it available. My dad is retired, my mom, my brother and I are unemployed.
Last year I had my scholarship and I earned around $700 a month, which was a big economic help in my house, but I have no scholarship anymore because I finished my degree.
One barrier for me has been anxiety and depression tied into my being transgender. For most of my life (and still sometimes today) I have avoided going out with friends or doing things in public that I enjoy doing because I’m afraid of the negative reaction I’ll get as a trans woman. Also, being a fat trans woman who lives in a smaller city, I’m not able to find very many clothes that fit me locally, and expressing myself through fashion is definitely one way that I practice self-care. At first I loved going shopping with my friends, trying to find cute outfits, but that soon turned south. Trying to go shopping for new clothes I like here where I live got to be so fruitless and depressing that I haven’t done it in over six months.
Lack of workout wear available/affordable in my size. Lack of affordable natural and organic foods. I’ve had people not take me seriously when talking about nutrition or exercise, thinking I wouldn’t know about nutrition because of my size. Assumptions that my attempts to better my health meant, often exclusively, that I was trying to lose weight. I’ve also worried about weight limits on things like workout equipment, and when I was shopping for a new bicycle, I had to keep reminding the store clerk of my needs with regard to weight limit.
My own beliefs of my worth have kept me from a lot of self-care. I felt like I wasn’t worth anything because I didn’t fit the typical society standards.
Time is the biggest barrier to self-care. I would give anything to be able to arrange my work schedule so that I could have more time to myself.
The older I get, the less I care about what people think, but I still have that nagging voice in the back of my mind. What if I go somewhere or try a new activity and I am the biggest person? What if I don’t physically fit? Are people going to laugh? What if I am actually not capable of doing said activity? I’m sad that I haven’t been able to completely shake these thoughts.
Question 2: What kinds of self-care would you like to engage in or adopt if there weren’t barriers to access or ability?
Honestly, I’d like access to an aqua-aerobics class. Unfortunately, most of them cater to seniors and retired people and won’t fit around a full-time working person’s schedule. Also, clubs with pools tend to be more expensive and are not handicap accessible (narrow ladder entry, etc.)
I’d like to get back my gym membership, but I can’t afford it right now. Gyms tend to be super-expensive. The gym I used to go to was nice, but I would have to take the stairs two floors down to get to the change room, then two floors up to get to the pool. I’m currently walking with a cane due to a knee injury, so that’s not going to work.
I’d like to take the fat-positive yoga classes offered in my city, but as a public transit user, as well as being a student and working half-time, I just can’t make it to any of the scheduled classes, all of which are at a studio on the other side of the metro area. Even if I could fit it into my schedule and have transportation, the cost would be a barrier.
I’d like to be able to chose movement options that I enjoy, but instead I currently only have time to do the walking needed to supplement my use of public transit in going about my normal, everyday life. I like walking, and I would otherwise walk for pleasure, but with the current state of things, I’m walking routes that aren’t very fun or interesting.
I’d like to cook all of my food from scratch, gardening and raising most of it myself. Again, the time limitations of a long-transit commute on top of working and going to school. Plus, with space limitations of being an apartment dweller, there’s only so much you can grow in planters on your patio, assuming you’ve got enough sunlight each day for growing things.
I’d also like to have dedicated time for my hobbies, as a way to relax. Time and space are major factors right now; my sewing table has been taken over by my fiance’s computer because we only have room for one desk in our bedroom. We’ll be moving soon, and I’ll have the space for my sewing things again, but the decision to pay more for an apartment that has a second bedroom we can use as an office was tough. It’s $200 over the budget we were comfortable with, which probably doesn’t sound like that much to most people, but to us it nearly broke the budget.
I would say that I would like to have the help from a HAES-trained nutritionist who would help me to learn to eat normally, and make better choices without obsessing about eating the perfect meal. I think that that, along with the help of my psychologist, would help me overcome my issues with eating and food, and would contribute to a better general health after cancer.
I would also buy a lot of more healthy food more often, and I would like to go to yoga classes, since I am the kind of person who needs instruction.
There is a great fat yoga place that I would love to go to, but every class conflicts with my work schedule.
I’d love to be able to experiment with my wardrobe and be able to wear whatever clothes I want, but I can’t afford to and I can’t find many clothes I like that are my size. I’d also like to learn to dance, but again, there’s the money problem, and I don’t know how fat-friendly any local dance classes are.
Gym workouts, dance, naked yoga. Shopping for clothes somewhere other than online stores. Nutrition advice that doesn’t revolve around weight loss. Eating organic.
Question 3: Have you faced any forms of discrimination by healthcare professionals? If so, what was your experience? How did it affect your view of the healthcare industry?
Personally I have not.
I’m able-bodied, and I’m Mestiza (mixed race), middle class, and a “small” fat women.
The persons who experience the most discrimination in my country are the persons who belong to Mexico’s different ethnic groups. Things are so bad for these persons that even public hospitals have denied their service to people who belong to ethnic groups.
Because my BMI is just 30 (I’m officially considered by my doctors obese, but a barely obese women), and because I have a very curvy body, I have not experienced discrimination in my doctor’s office. Just a bit of biased treatment when one of my doctors send me to test for diabetes. Still, it didn’t bother me because I have diabetic relatives, and I’m not sure if this was routine.
I have also noticed that the distribution of fat plays a role in how people treat you. When you tend to carry your fat over the abdomen, you get more social rejection than when, as a women, you carry it at the hips and breasts.
I used to think that weight discrimination didn’t happen in Mexican doctors’ offices, but I was wrong, since several of my friends have faced this kind of discrimination in a doctor’s office. It enrages me.
Also, the government is planning to change the health laws by modifying the Mexican Constitution. In short (among a lot of other awful policies), they are planning that we, the fat and the chronically ill, will have to pay extra to compensate the State, along with complementary insurance that would cover the illness that are not included in the basic service.
Lots of us in Mexico are hoping that these laws never come to reality.
I went to see a new doctor. Things went well. We talked about my weight, my health goals, my obstacles, etc. He bid me farewell and made a follow-up appointment for two weeks later. I went and he must have been busy. He merely gave me a cursory once-over and was trying to rush me out. Whatever, I didn’t really want to be there anyway.
A little while after that I became very sick. I had pain in my joints, swollen glands and a high fever. I went to see him and when he finally came in after the nurse’s initial exam he insisted that I be weighed — would not proceed any further unless I got on the scale. I was sick and had no fight in me so I obliged. Turned out, I had lost weight (alarming since I wasn’t trying). He was ecstatic and congratulated me — talked about my diet, what exercises I was doing, what more I could add on to my efforts, recommended a nutritionist.
My time was near up before I got to talk to him about the roaring fever I had that the nurse discovered before he came in. Suddenly, he couldn’t be bothered. Told me it was probably a problem with my teeth, gave me a script for a mild dose antibiotic and told me to see my dentist. I went to the dentist who, after an exam, became quietly alarmed. After an X-ray, that I had to pay for out of pocket because I had already had one at my last appointment, he found nothing at all wrong with my teeth. He called in a script for a higher dosage of the antibiotic and told me to get to the emergency room right away if I suddenly found it difficult to swallow.
I was furious and decided to do something about it. I wrote a nasty letter to the clinic abut how unimpressed I was with the new doctor and how he ignored my initial reason for coming in to the clinic. He replied to the other doctor but accidentally hit ‘Reply All’ and I saw him blatantly lying about what occurred during the appointment. I called him out, which made me feel better, but nothing really became of it. A year later and he is no longer practicing there, but I felt good about calling him to task, something I would not have done several years ago.
I think the clearest memory of discrimination I have in a healthcare setting was when I went in regarding menorrhagia (excessive menstrual bleeding). At the time I wasn’t making more than about $12,000/year, so my only healthcare was through the local health department’s sliding fee scale clinic. I could receive routine care through the clinic at very little or no cost.
The practitioner I had been assigned was a male Physician’s Assistant who seemed to be very unenthusiastic about being there. We had several interactions where I just felt like he wasn’t hearing me, and I got the usual “stop drinking soda and you’ll lose weight!” sort of crap. When I went in about my periods, as I’m asking the question he’s getting up and doing the whole hand-on-the-door-knob-I’m-done-will-you-shut-up-already thing.
His response? He shrugged and said “Well, you’re probably just built that way” and leaves. He asked zero questions about the frequency and regularity of my cycles. He asked zero questions about volume or flow rate. He didn’t ask about my risk factors for sexually transmitted infections. He didn’t ask me to keep records and check back in after a couple of months.
Five years later, I’ve finally pinned down that it’s likely a symptom of polycystic ovary syndrome (PCOS) for me, but I’ve still yet to find a treatment that doesn’t involve birth control, because I’ve already experimented with multiple forms of that with poor results.
I’m at a point where I don’t go into the doctor’s office until I’ve researched my symptoms and come to a preliminary idea of what might be going on. Whenever possible, I even have a method of treatment in mind, which leaves me in a position where I’m only seeing the doctor for confirmation and to write the prescription. I’ve had doctors treat me even more poorly for being so well-informed. One said outright that I couldn’t possibly know how to read medical research appropriately, and then dismissed my suggestion of what might be wrong out of hand, insisting that it must be something else.
Because I’m poor and don’t have a college degree, plus I’m fat, I must be lazy, stupid, and deluded. I hate that healthcare is an industry, and I think that’s one of the biggest problems we face. We’ve put our survival and well-being as a race in the hands of a for-profit industry, from health insurers to pharmaceutical manufacturers to doctors who pick specialties based on potential annual income. It’s completely messed up, when you step back and think about it.
In my early 20s, I decided I wanted to be thin. I threw out all the food in my apartment and started from scratch, joined a gym, started going three days a week, started riding my bike to work and being active on the weekends. I never managed to lose weight, but I started having irregular periods — was spotting in between. I went to a gynecologist who railed at me about my weight, and wanted to prescribe the diet drug Fen-Phen and weight loss surgery for me.
I refused those, but she convinced me to take birth control pills to prevent ovarian cancer. I started them and by the end of the month I had a blood clot in my calf. I thought I’d pulled a muscle hiking in the mountains, so I worked it out and kept going — had a new blood clot by morning. Over the course of several months, I had more episodes of calf discomfort and shortness of breath that I didn’t realize were related to each other.
Trips to the ER resulted in doctors telling me I was out of shape and needed to get more exercise to lose weight. They had cognitive dissonance in what I was actually saying to them against their own beliefs. Knowing something was terribly wrong, I stopped going to the gym and schlepping around on my bike.
Long story short, I went to a new doctor who, by the time I got to him, discovered I had legions of blood clots in my lungs. I could not walk from the chair to the desk without panting like I’d run a marathon. Doctors from other hospitals came to my bedside astounded that I had survived pulmonary emboli of this severity.
This experience and many others I have had give me a cautiously cynical view of the medical profession as a whole. I know that the help one needs often comes filtered though a medical professional’s personal beliefs. I will often seek another opinion when I feel it’s necessary and will do my own research.
Yes, and often. I had a doctor who wouldn’t give me contraceptives because I couldn’t possibly need them, as a fat woman (mid-1980s). Another would pick fights with me, then take my blood pressure, and when it was high (from fighting, duh!) he’d prescribe me medications that had terrible side effects. When I said I couldn’t handle the side effects, the doctor told me that those were not the side effects of that drug (FWIW, my blood pressure has been on the high side of normal pretty much forever — not medication-worthy).
When I changed doctors, the new one would all but ignore anything I went in for, in favor of lecturing me on my weight. The worst was telling me to go on a diet as treatment for a knee injury (I fell… not a stress fracture), and prescribing diuretics for what I thought was a bone spur on my heel (as a weight loss surgery survivor, diuretics can put me in the hospital).
I haven’t seen a general practitioner in over three years. I know I’ll get nowhere with anything that is actually afflicting me. Fortunately, I’ve had a great gynecologist. I’ve never had a single issue in her office. They have large gowns, and large blood pressure cuffs, and we discuss real medical issues there.
That’s just a small sampling of what I’ve experienced.
The only thing I can think of is that I’ve had doctors spend a lot of time talking to me about how I should lose weight when I’m at the hospital for completely unrelated things. Like when I broke my foot, when I broke my finger and when I’m getting check-ups for my epilepsy. Still, the doctors tell me that I should lose weight.
My Mom and I share the same doctor. My mother was suffering for over a year with a nonstop period. She was cramping and uncomfortable. He told her it was because she was fat and smoked. My sister got really frustrated and made her a doctor’s appointment with someone else since my Mom’s doctor refused to refer her. Turns out she had uterine cancer. Luckily they caught it in time.
Personally I am afraid to go to a doctor for two reasons: 1) I have depression and anxiety, and 2) I am overweight. All of my symptoms have been blamed on one or the other or both. I am due for a check-up and have been putting it off. I have a new doctor now, but I am still afraid.
I’d like to share something I witnessed within my own family. My grandmother knew for a long time that she had sleep apnea, but she didn’t want to seek treatment because she didn’t want to wear a restrictive face mask. When we finally convinced her to be officially tested, she was already unable to transfer from her wheelchair to the bed on her own, and we were using a Hoyer lift for transfers.
The sleep clinic was aware of her mobility limitations and size well in advance. When she arrived, there was only one staffer there for the night, and my mom (her caregiver) had been told she wasn’t allowed to stay the night to assist. They had a lift for transfers, but upon getting her out of the wheelchair and over the bed, they discovered that the lift was broken and they weren’t able to lower her to the bed or back to her wheelchair.
The staffer left her dangling in the broken lift, no longer over the bed or the wheelchair, and left the room to get a different lift. The next one wouldn’t function either. Finally, the third lift worked and they got her wired up for the sleep study. Unsurprisingly, by this time she was so upset and humiliated by the treatment that she was unable to sleep.
This was no rinky-dink, backwater doctor’s office. This was at a major regional hospital that otherwise has an amazing standard of care. She went on to refuse to be tested again, and almost a year later sleep apnea, along with congestive heart failure, contributed significantly to her death.
Her experience was so horrific, that others who work in the same healthcare system heard the story (without her name of course), in some cases working in different towns! Who knows what might have happened had she been tested and treated appropriately.
She had plenty of health issues, but there’s an ache every time I think about seeing her in intensive care on a respirator. There’s anger every time I think of her trapped in faulty equipment. There’s fear that I could be in that position myself.
I’ve been quite lucky in that regard; I haven’t had too many bad medical experiences. My general practitioner will mention my weight, but she has also said that she doesn’t think that everybody is meant to be thin, and she has heard of HAES before. My major problem with her is that she doesn’t have extra-large blood pressure cuffs.
When I was younger, she would put me on diets or give me diet pills, but that was before I knew better. The doctor that I had before her put me on this meal replacement cookie diet when I was around 12. I look at pictures of myself back then and I want to give him a shake. Sure, I was bigger than my classmates, but I was not fat.
I had surgery a few years ago and not one of the doctors mentioned my weight. I’m currently dealing with torn cartilage in my knee and, again, nobody has mentioned weight. Either they are afraid of me, heh, or here in Canada doctors aren’t as obesity-obsessed as other places. Who knows. I hope that my luck continues to hold out. Reading other people’s stories has my guard up, so I’m ready to have this discussion with doctors.