My Cancer Pt. II, Medical Fat Shaming Could Have Killed Me


I have written about my cancer journey before. I’ve mentioned my care team, who make my life easier, and their credentials. I’ve written about how to interact with cancer patients. I’ve even spoken on the topic for a third time at Woodhull Sexual Freedom Summit.

I’ve tried to be kind and jovial, and reasonable about the entire thing. I’ve tried to be educational. I’ve tried to be happy just to be alive. I just can’t anymore. I can’t advocate for patient rights, I can’t advocate for science without a little venom. Coming off a post raging against alternative medicine, I can’t be quiet about it anymore. This post is incredibly, intensely personal. It was very hard for me to write. There are things in here that some of my best friends do not know. In fact, the only person who does know all of this is Jon. Now, I’m laying it all out for you all.

I had walking pneumonia when I was a senior in High School. I was very sick during a production of Footloose, but I kept chugging through it. When the show was over, and I was still sick, I went to see my PCP in Pittsburgh. She told me I had bronchitis and walking pneumonia. I got treatment for it, and most of the symptoms went away. During my checkup after that, I told my doctor I wasn’t quite recovered and I still had a cough. I was told to give it some time. I was 17.

Over a month later, and I was still coughing. At that point, I was told that I had bronchospasms. She gave me Advair and a rescue inhaler. I was told to lose weight, that it would help. I was told that losing weight would probably fix the problem entirely. At that point, I was at my lowest adult weight. I continued to take the medications as expected, and I made a reasonable recovery. This cough continued through two years of college, before I moved home. Even despite making the walk up “cardiac hill” at Clarion University on a nearly daily basis, I was not getting any better with being able to breathe when I got up the hill. I paid it no mind. My weight stayed around the same. Any time I went to see the doctor to figure out why I couldn’t shake this cold, or that cold, I was given an antibiotic and told to lose weight. I was 19.

Eventually, I met the partner who would become my spouse. The first Thanksgiving I spent with him, he got me sick. Of course he did. It was one of the rare times he’s been ill, and so naturally it was more contagious than anything I’d ever experienced. I went home from our trip, snuffly, and coughing. I anticipated it would be fine, just a cold. I picked up some Robitussin and called it a day. I figured that the cold was just aggravating my bronchospasms and that’s why it was taking so long to recover. I had just turned 21.

For almost a year, I blamed the consistent cough to bronchospasms, continued to take my asthma medications and try to lose weight. It was getting harder to exercise when I was getting out of breath doing things that I had done for much of my life. I was finding it harder and harder to hold notes for long periods of time when I sang. I was finding it harder and harder to play my flute. I shrugged it off that I wasn’t practicing enough.

The first time I coughed up blood, I shook it off. It was just a little bit, and chances are it was just from a raw cough. I shrugged it off and kept going. It was just a cold, you know? I was living in York, PA the next time it happened. The blood was bright red in the palm of my hand. I went to the ER only to have them tell me that there wasn’t anything they could do for me. It was probably just a broken blood vessel. They prescribed me some antibiotics, told me that if I lost weight, I would have a stronger immune system. I didn’t have insurance, and I’m still paying that medical bill off. I was still 21.

I was scared. My partners were scared. I was starting to think that there was something really, really wrong with me. I felt like I was stuck in a nightmare, and that the cough would never go away. We moved to Virginia, and a week after my 22nd birthday, Jon and I got married. I had a physician diagnose me with GERD, so I started taking Prilosec. I was informed that if I ate healthier, and lost some weight, that would help with the reflux. Things continued to get worse. I was hardly able to climb a flight of stairs without getting winded. I was tired all the time. My doctor felt that losing weight would help. Maybe I could try yoga, or swimming. It was very hard to continue to move when you can barely breathe. I turned 23.

We moved to an apartment in an area with a beautiful waterfront. My hubs and I found out we were pregnant, and we were so incredibly thrilled. We barely had time to process the news before we found out I miscarried. I was miserable. I couldn’t function. I assumed it was because I was fat, and had heard that fat women have a harder time having children. I internalized a lot of that self hate during that time.

miscarriage post

The only thing I posted on the day I miscarried.

So I walked.

I walked nearly everyday. It was easy to walk in the area I lived in. I walked to work, to the bus stop, to the metro. I walked in good weather and bad. I never lost weight, in fact I gained some, getting to my highest weight of my adult life. Walking short distances left me sweaty and breathing heavily. Eventually I asked my husband to take me to work, because when I walked the 1.7 miles to work, I was barely able to function the rest of the day.

During this time, I began seeing a new doctor. She did her damndest to help me, and expressed a preference that I lose weight, but was never pushy or demanding about it. She understood that it’s hard to lose weight when you can’t work out. I was given multiple inhalers. I was on Prednisone (a steroid) more often than not. I was given a diagnosis of asthma, and a number of other potentials. I took a Z-pack so often that I know how to spell Azythromycin. I took so many antibiotics that I am able to tell you that Levaquin makes me violently ill. I kept getting worse. I had a CT scan [AN 6/28: at an emergency room] that diagnosed me with a touch of pneumonia in my left lung. I was treated for the pneumonia, but it didn’t really get any better. My doctor worked tirelessly, and I will never forget how kind she was.

After one particularly stressful day when I couldn’t get into my apartment, I sat in the hallway coughing, and coughed up about a teaspoon or so of blood. Bright red blood in my hand. I shrugged it off again. Shortly after this point, my coughing spasms became terrible. I was having a hard time holding my bladder. Often I would need to close the store I worked at to run to the bathroom. Often I would miss. I got very paranoid around this time, always bringing extra panties with me, sometimes bringing a second set of clothes. I was 23, and who really wants to be peeing themselves every time they cough? I would leave parties early because I was terrified that I’d cough and pee myself. That I’d sit on someone’s couch and leave a urine stain behind. The concept of that was mortifying. I learned very quickly how to hide my coughs, a tactic that I still use now.

My best friend and I trying to pretend everything is normal. I did my best not to cough at her wedding. I'm pretty sure I failed.

My best friend and I at her wedding. I did my best not to cough at her wedding. I’m pretty sure I failed.

I began wearing pads, but eventually had to switch to adult diapers. I remember the first time I bought a pack, I sat in my car crying. My preferred brand was Silhouette, because I could wear them under my jeans without anyone noticing. I noticed. I noticed all the time. I was ashamed. I cancelled plans. I stopped having sex because I stopped feeling sexy. Jon was incredibly patient with me, but I know that it took a lot out of him. If you know me at all, you’ll know that sex is my preferred method of meditation. Sex is my religion, and I worship with my body. Sex is how I connect with my partners, with my body, with the universe. It was around this time that I sunk into the deepest depression I’d ever been in. My doctors still had no idea what was wrong with me. I went to see an allergist, thinking that maybe it was something in the Virginia ecosystem that was making me sick. I found out that I wasn’t allergic to anything.

I didn’t want to be “that sick girl”, so I spent my time when I had to be social smiling and laughing. Shrugging my cough off as allergies, or a cold, or GERD. I was always sick. I just wanted some nights to pretend to be normal. Pretend as though I wasn’t going to go home to one of the most humiliating parts of my existence. Diapers are nothing compared to what was happening when I was at home. We tried everything. I spent time researching medical interventions, and my doctor, to her credit, helped me try all of the ones that she felt could help. I spent my spare time researching alternative medications. Apple cider vinegar, eucalyptus, mint, custom teas. We cut out gluten, cut out dairy, cut out acidic foods. I ate so much fucking rice during this time period that I can barely stand it now. I tried crystals and healings. I tried meditating. I would have tried anything if it made me feel better. One of the people who worked and lived in our apartment complex commented to Jon that she heard me coughing at night.

I remember spending my nights hacking in the shower. Curled up under the stream of hot water in a too small tub. I had the hot water on my chest, the steam rising up, trying to help me breathe. My coughing spasms now made me vomit. My coughing spasms made me urinate. I spent my nights in the shower curled around a bucket coughing, vomiting, urinating. It was fucking humiliating. I had only been married a year, this wasn’t fair. I wanted to enjoy my time with my partner, not have him rubbing my back when I couldn’t sleep at 2am. I remember one particularly bad night when I hadn’t eaten in about 24 hours because I couldn’t keep anything down, the coughing fits were so bad. I spent my night in the shower and he napped on the bathroom floor, effectively force feeding me toast so that I would stop vomiting bile and mucus. This was the first and second year of our marriage. I wanted to be having sex with my new husband, not spend my night sleeping, sitting upright so I could breathe.

I remember being so thrilled I was invited to this wedding, especially considering I had cancelled plans so many times.

I remember being so thrilled I was invited to this wedding, especially considering I had cancelled plans so many times.

It put a strain on our finances, it put a strain on our relationship, neither of which have really recovered. I started thinking that I was just a hypochondriac. That the things that were wrong with my body were coming from my mind. This was affecting my life so badly that I began researching inpatient facilities for mental health. I felt like I needed to check into a facility that could help me manage my hypochondria. At this point I had a gallon sized ziplock bag of medications. I was taking meds 3-6 times a day. My ziplock was nearly overflowing. Most of all, I felt like I needed a break. So I went camping with my then partner Kai.

From the Ren Faire that year. The last event I went to before my diagnosis.

From the Ren Faire that year. The last event I went to before my diagnosis.

Much of the camping trip I spent with Kai, was in the rain. When I came home, I got so incredibly sick, and for the first time had a fever. I got a chest X-Ray and a CT scan. An ER physician gave me Levaquin as an antibiotic and suggested I see a pulmonary specialist. The Levaquin made me violently ill. When I eventually followed up with my Pulmonologist, he pointed out something in my CT scan. There was something in my bronchial tube. I went for a bronchoscopy, and was then referred to a surgeon. He diagnosed me with cancer on October 23, 2012. You don’t forget a date like that. My surgery was scheduled for 13 days after my diagnosis. I had just shy of two weeks to prepare for all of this. Part of that preparation was creating an Advanced Directive just in case I was part of the 10% who did not make it through this surgery. Another part was writing letters to all of the people I loved. I wanted to make sure the people who were important in my life at that time knew that I loved them. 13 letters for 13 days. 12 people I loved and cared about, and a final letter to all my friends to be read at my funeral. “Any surgery has risks” is a phrase I never want to hear again.

I had my lung removed November 5, 2012 from a 5cm incision in my left side. My surgeon wouldn’t let me keep the lung (rude), but he did take photos (more than what is pictured here). The bottom half of my lung was black. It was dead. I had a rotting piece of tissue inside of me for who knows how long.

Check it out.

Check it out.

Were it not for physicians who tried to treat something beyond my fat, physicians who saw my whole health rather than make assumptions in an otherwise healthy 20-something, I would still have cancer inside of me. I would still be sick. I would still be sitting in showers at night, coughing and vomiting. Or, the cancer would have spread and metastasized inside of me. Were it not for physicians that saw me as a person, rather than seeing my fat as something to treat, I very well may have stopped seeking medical treatment, thinking that I was simply mentally ill. I could have died.

Now, instead of being dead, I live with a tiny amount of fear. Every time I cough, every time I get sick, every time I am around someone who is sick. Every time I’m near someone who doesn’t believe in vaccinations I get scared. I get scared that the one lung I have is gonna give out. Every time I get a cramp in my stomach, or have diarrhea I’m scared that the cancer has moved to my abdomen (where this particular cancer typically presents itself). I live my life as best I can, as strong as I can. I also live it afraid that this will happen again. Now, I’m lucky. I get a blood test every few years. I get some x-rays, some CT scans. I go for check ups with my physicians. Everything has consistently come back clear. The fear is still there. Jason Mraz said it best in his song “The Remedy” when he said “The tragedy is how you’re gonna spend the rest of your nights with the light on”. I’ll spend the rest of my life checking to make sure my cancer doesn’t come back, and the rest of my life afraid that it will.

If you’re a patient, advocate for yourself. Do research, and find a physician who work with you and treat you how you want to be treated. If you’re a physician, try to see the whole patient, rather than just the one part of them that you think can cure all their ailments. If you’re a person who doesn’t believe in vaccinations or believes there’s a magical cure to fix all cancers, go to hell. I would have done anything, paid any amount. I would’ve begged, borrowed, or stolen to get that cure. My cancer wasn’t even the worst or the most humiliating. When I see doctors only treating fat instead of treating patients, and people saying that cancer has a magical cure, it’s a slap in the face to me, and a terrible blow to anyone who has lost someone to cancer after spending their time begging for a cure. After spending their money desperately trying to be well.

When my surgeon told me a diagnosis five years prior could’ve saved my lung, I remember a feeling of complete and utter rage. Because I remembered the five years I spent looking for some kind of reason why I was always coughing, always sick. Most of all, I remembered being consistently told that the reason I was sick was because I was fat.

My doctors treated my fat, rather than investigating the real reason I was sick and it could’ve killed me.

In November 2015, I’ll be three years cancer free. I have one of my lung photos framed with the letters I’ve written. They were displayed at an art gallery in Alexandria Virginia. November 5, 2022 I am going to throw a party, and light a fucking fire. I’m going to read all of the letters to myself, except for the last one. The final letter I’ll read to everyone there. Then I’ll throw those fuckers in the fire, and celebrate no longer being afraid.

I’ve learned that I’m a bigger bitch than cancer could ever be. To quote my friend Crista, I am fucking MIGHTY.

I am Fucking Mighty.

I am Fucking Mighty.

-The Frisky Fairy.

69 Replies to “My Cancer Pt. II, Medical Fat Shaming Could Have Killed Me”

  1. Thank you for sharing your story. I love that you wanted to keep your lung after the surgery (come on doc!). I feel like we are kindred spirits. Such powerful words.

  2. Thank you for sharing this. Thank you for being brave. Thank you for still being alive and not letting fear silence you.

  3. I am nine months out from my cancer surgery – and I was so, so very fortunate to have a doctor who looked at all of me, not just my fat. Who listened to what I told him I wanted, and did aggressive surgery, not conservative, even though it meant a longer time under anesthesia and that was risky because I am fat.

    You are mighty. And the good doctors? They are mighty too. The rest can rot.

  4. Wow. I’m so sorry and angry for you that you were put off like that for so long. WTF? Where was all that training the doctors had gotten? Assuming because you’re young that there is nothing wrong with you (besides fat) is not only unethical and immoral, it’s stupid. Lots of young people have heart problems, cancer, tumors … all sorts of things. I want to go yell at all those doctors who thought losing weight would be the cure to everything.

    I’m glad you are talking about it. This is what we need. The doctors need to hear these stories. No one should go for five years with cancer in their body.

    I’m having a similar issue because I’m fat *and* have depression. All my aches, pains, exhaustion, sneezing, and coughing are dismissed as being exaggerated because I have depression … and because I’m fat. I was told by an allergist that my allergies aren’t bad enough to explain the degree of my symptoms and that I should get a hobby. A hobby! [At the time I was raising four kids, worked full time, was running two different volunteer organizations, as well as had a myriad of hobbies.] Never mind that I can’t sing like I used to (now they’re adding in “you’re getting old” to the list of reasons since I turned 60).

    I’m glad you are able to live your life. I hope it’s a long and full one.

    1. I feel you about being fat and depressed. My therapist spends half of our sessions harping me on working out and how it’ll be the cure to everything. I know it can help, but I also have a fuck ton of mental problems so I want those fixed instead haha! It sucks to have the fat be the first thing people go to.

      1. Geez Louise. Therapists should be about teaching self acceptance, not harping. I’d say NEXT! to that therapist

  5. I had a similar experience. Not with cancer, but I had a misdiagnosed congenital kidney defect and was told the back pain I was experiencing was that I just needed to work out and lose weight. Eventually it got diagnosed properly (10 years later) and the surgeon told me that he was very surprised they managed to save kidney. Normally after having the problem go on that long there is enough kidney damage has occurred that they just remove the kidney.

  6. Hi, thanks for sharing your experience. It is painful.

    Let me share a bit of mine.

    Part of the problem wasn’t just fat, it was young, IMHO.

    I had a partner who, at the age of 33, developed serious headaches. Had never had headaches in her life. She was a little heavy (listed as morbidly obese but was basically a size-16 6″0′ woman), but was young. Doctors kept saying, essentially, young people don’t get cancer, it’ll pass, take asprin. At least she was never told to lose weight, because that doesn’t cause headaches. When she showed up with double vision at an optometrist – where she couldn’t be seen as “making it up” – the ocular pressure was very high and she was scanned to find the problem and diagnosed — after 6 months of being told “we don’t do scans for headaches”.

    You can probably see where this is going. It was brain cancer, glioblastoma, it was caught a bit late, first round of treatment went well, came back hard, she didn’t make it. Glioblastoma is a rough diagnosis and I do think she should have gotten another year had it been caught earlier.

    She did leave us a book of her poetry.
    http://www.amazon.com/This-Layer-Plush-Veronica-Simon/dp/193115709X

    There’s a lot of flaws in our medical system. One is that scans are extraordinarily expensive – like $4000 to $6000 instead of $400 in other countries – so we’re scanning less and missing diagnoses. There’s a strong bias against scanning young people, because if it’s “just pain” or “just a cold” or “just coughing” they don’t want to do it — essentially rationing care on your behalf. A rational society would spend more on the health of young people, and less on the health of old people if there was a shortage, because young people have more of their life left — and I’m not sure we really have a shortage. Yet young people don’t have single-payer health care – only old people do – and likely don’t have the money, and these days probably don’t have health coverage through work.

    Just sharing this story, it shows age bias more than fat bias. I think both were active for you, from your story.

  7. Thank you for sharing this. I have an incomplete spinal cord injury because of doctors not taking my spine fracture seriously because I’m fat…I hate knowing that there are so many stories like ours about the fat shaming in medicine. I hope that the more people like you and me speak up, more doctors will realize their folly!!

  8. You are amazing! Your story, while outrageous, is mind boggling in this world of technology and science. Your story should be summarized in a humongous lawsuit naming all of the health care “professionals” who should be dammed for not treating the patient, but, rather, treating the symptoms that should have lead them to investigate beyond your weight! Since when did weight become a determining factor in how to treat the entire patient including the mental and emotional components of any ongoing, long term illness, especially in someone as young as you. Kudos to you for your up close and personal story shared with all of us! I am glad you are strong – I am glad you are able to tell your story – you are stronger – in spite of it all!

  9. You’re amazing and I’m so glad you survived this.
    I’m not surprised at how you were treated though because Pittsburgh is a teaching medical town and it’s hard to find a good doctor who listens to you. I told mine that if she ever leaves town I’m moving where she goes.

  10. Your story is amazing. You are amazing! Thank you for taking the time, effort, and pains that it took to put this all out in writing. Kudos to you! You ARE fucking mighty!!

  11. This could be my story except not cancer but a rare disease called pulmonary artery hypertension. I lucked into a doctor who treated
    me. I could have had so much more of my daughter’s childhood as functional had it been diagnosed.

  12. I went through almost the same thing, many years of in and out of the hospital and the doctors blamed it on my unstable blood pressure, I had the fatigue and so many more of the symptoms you had. I also knew it was more but got to the point that I also thought it was in my head. Last may I again almost passed out from very low blood pressure and ended up in the hospital. They couldn’t find anything else though. Just before I was relased the er doctor decided to do an Mri and found a brain toumer, had a biopsy and it was cancerous. Its a terminal type of brain cancer and they are unsure how long it had been growing. If you are sick and you know your body and that somthing is not right don’t give in!!!!! Advocate for yourself until the doctors are so sick of you that they check everthing just to shut you up… Its happening more and more and people are dying because of doctors dismissing peoples sicknesses becuase they cant find anything.

  13. PREACH IT, SISTER!

    My obstetrician was so busy trying to blame all the issues I was having on my weight, he didn’t see the actual issue which was cancer. My PCP was a gift from the heavens that thankfully saved my life so I get to see my baby grow up. Just over a year cancer free now!

  14. Wow I really empathise with your story.
    I have a major brain condition where my body produces too much brain fluid and essentially squashes my brain, eye nerves etc mimicking the effects of a brain tumour. I’d been back and forwards to the doctors for a long time complaining of headaches and dizzy spells along with Blurred vision and the combination of the fact that I’m fat and have fibro led to me getting sent away with bullshit excuses a lot. We don’t know how long I had it before it was picked up by an eye doctor 2 years ago when I went to get my glasses prescription checked after one doctor fobbed me off that it was that and I wanted to prove them wrong and go back and say next excuse! It’s already caused chronic migraines, blackout and I’m being tested for hearing loss and I have a constant headache to one degree or another and I’m a lucky one! This can make me go blind if it’s not kept under control and what do I get from my neurologist every time I see him? You’ve guessed it .. . . Lose weight it’s a magic cure! Yeah well tell that to the people I speak to every day on support groups who are under weight and have this illness, or the people who have lost weight and had it make their symptoms worse or worst yet the mother of the 10 month old baby I read about this morning who has just been diagnosed!! I can guarantee you that she didn’t get it because she was fat did she dr?!? Argh it makes me so mad.

    So thanks for sharing your story, you are not alone xx

    1. I hate that once you become fat everything is blamed on being fat.
      I have idiopathic cranial hypertension(sp?) and the solution is taking medicine, basically water pills, and loosing weight to reduce the pressure until I loose enough weight that the pressure reduces on its own. It sucks.
      My mom also had Lupus that went untreated for decades despite hashing constant tests done over the years because very doctor said her high blood pressure and arthritous was cause by age and weight. She lost weight and nothing improved. It took them decades to finally try testing for Lupus.

    2. I have the same thing, pseudo tumor cerebri, or idiopathic intracranial hypertension….have had it for over 17 years now , lost weight ,(150 lbs) still have the migraine headaches, all same symptoms you describe….was told if I lost weight , all my problems would go away….they have not….

  15. As a fellow cancer survivor…diagnosed December 19th 1990 you are a fucking rock star. I am violent and angry for you. I am beyond thrilled you are still here. And I am thankful that other fatties will learn from you.

  16. Wow–this is incredibly moving and powerful. I am so angry that you had to go through all that fear, pain, and bullshit bigoted so-called treatment for so long before finally getting proper help.

    I am so happy that you have been cancer-free these past few years, and I hope you get to celebrate many, many more.

    Thank you for sharing what must have been a vulnerable piece.

  17. Thank you. Keep speaking truth.

    Again, my story is similar. Surgery at 44 and coordinated care are finally solving something that was wrong with my body all my life. Fat was the result, not the cause.

    I wish you, and all your readers, health and happiness.

  18. Couple points:
    The pathologist needs the lung tissue to analyze microscopically to confirm the kind of tumor and to test for various molecular markers that can sometimes influence treatment decisions.

    Also worth noting that repeated chest CTs in young women lead to a small but measurably increased risk of developing breast cancer.

    1. I know why they kept the tumor, I was making a joke 😛 I’m consistently impressed and excited that they gave me actual photos!

      That breast cancer risk was one I didn’t know about. Unfortunately, I am already at risk due to my genes, and require a chest CT for follow-ups for cancer (and x-rays when I’m sick…I should be glowing by this point haha)

  19. I am really really grateful that you are still alive and able to share your experiences and wisdom. I hope it will help others in need, and that you feel better soon and remain free and healthy. 🙂

  20. You are mighty indeed, as well as courageous and inspiring. Thank you for sharing this vital story; I cannot imagine it was easy to do. Sadly, few doctors seem to be able to see beyond our fat, as I know and am reminded myself every time I am forced to seek medical help. Losing weight — which they should know is damn near impossible for most people in any sustainable sense — is the only remedy they offer to a myriad of woes, as if our bodies have somehow become ONLY fat, 100% composed of fat, nothing else to see here, nothing else that could be happening. This they do despite mounting evidence that fat is not as bad, eaten or carried, as we have long been told. I am grateful that you are still with us in this world, and I admire your courage and strength, but I am also just filled with pain and rage at the suffering you had to experience because too many doctors are not able to look beyond BMI.

  21. Thank you for writing this. Your spirit is inspiring. So sorry that you went through that experience for so long.

  22. After a surprise appendectomy, I had terrible back pain and a recurring fever. This stupid junior doctor-wannabe at the teaching hospital naturally assumed the back pain was due to being overweight. Turns out it was a raging kidney infection from being catheterized during the surgery and I spent a couple of weeks in agony thanks to that jerk.

    I wrote a very long letter to the chief professor of surgery and suggested some sensitivity training. Just because I am overweight, doesn’t mean I’m not ill!! I hope that junior learns that lesson early enough on to prevent situations like mine – or even worse, like yours.

    You rock!!!

  23. I think a lot of doctors will also dismiss younger patients as well. I had a really bad DVT in my leg that didn’t get treated near as soon as it could have because no one considered it possible because I was 18. By the time I was in the ER it went up my whole leg and into my abdomen towards my kidney.Afterwards I spoke to my doctor about an event a month prior to the DVT and asked if it could have been a mini stroke, which she said “no” to because I was “too young”. Even then she was still denying the obvious. I was shocked she couldn’t see how it was linked, and possibly something I could have used as a warning sign. I’m glad you were able to get help and I think it’s great you are advocating for self research. A lot of times doctors, family, and friends will dismiss clear signs because it doesn’t seem like the most likely option because of age, weight, sex, etc.

  24. Your story is ultimately a happy one – but no one should have to fight that hard to appropriate medical care!

    As an “obese” person I find anything medical to be a bit daunting.

    However as an older (40 now) fat person I am no longer willing to accept poor treatment, and since something serious – but nowhere near as bad as your experience, I have taken a new attitude.

    They work for me, in exchange for my money I am buying their medical expertise. I have asked more than one dr to separate their personal opinion from medical fact – when they have leaned way too close to the “lose weight and it will resolve”. I have learned to be forthright and be prepared to find a new Dr if there is too much fat shaming and not enough medicine going on.

    The worst experiences were when I was pregnant. Apparently being fat and pregnant is an instant CATASTROPHE! It becomes the only thing that is focussed on – you’re going to get diabetes (nope), high blood pressure (nope), low birth weight (nope), high birth weight (nope), and any of a zillion other scenarios. Weekly appointments, ultrasounds and so much medical intervention is was almost a joke.

    I had the easiest pregnancies of anyone I know, and both my deliveries were short, painless and perfect – one doctor actually said “well you were lucky, you should be greatful”

  25. Thank you so much for sharing your story with us, as an overweight woman myself, I’ve been privy to the ‘you’re fat’ diagnosis but i found that it was mainly with male doctors it happened with, at 11st when i was 13 i was told to loose weight when I had a cold, now at 21 and 17st, and a fair few years of being told my remedy to not being sick is to loose weight, I’ve refused to see male doctors at all. but recently I had no choice as there wasn’t a female physician in at the time, I had been having sharp pains in the side of my breast for a few days and I was understandably concerned, so I went in, I got examined and the rudeness of this man was shocking, tthe whole time he examined my breasts he grimaced and looked like someone had put shit under his nose. By the end of it he told me nothing was wrong with me and t go home. But then he suggested that I lose weight as the extra breast tissue was what was causing it, instead, I became angry(Not proud of it) but I was in pain and he was dismissing me with a half assed examination and diagnosis. and I left, complaining to the staff at time and asked if there were ANY female nurses on at all, where they took me, visably upset to a rather overworked nurse, dispite that, she comforted me, examined me and diagnosed me with a mamary gland infection. something the doctor should have been able to do, her advice was to keep them cmpletely supported with a correctly fitted bra and then had me perscribed with a course of anti inflamitories and strong painkillers. I actually wept with relief because she was right and after around two weeks the pain was gone and needed no more investigation

    Not anywhere on the grounds of cancer but this was my experience with the NHS.

  26. It’s not often I get emotional when reading something but your story left me in tears. I’m so sorry that this happened to you, and I’m very glad you eventually found the problem and a doctor who actually wanted to help you instead of just suggesting weingt loss as some kind of cure all. As a fat woman myself, it’s very concerning that such a major problem was overlooked by doctors for many years and blamed on your size when this obviously was not the problem. It’s awesome you have been cancer free for a long while. Thank you for sharing – you are MIGHTY as fuck 🙂

  27. Thank you all so much for sharing this part of me, and sharing my stories. I wrote this piece as a way to process through some of what I had been holding inside of me for sometime. I did not expect it to have such a profound effect on so many people. I appreciate how amazing and respectful everyone has been, and I thank you all from the bottom of my heart for being wonderful!

      1. That’s wonderful. Is it open only this weekend or will it also be open next weekend (7/18 and 7/19)

      2. Rebecca: I’m gonna get a friend and come on down next weekend. This sounds like a great show. I found the studio web site and got the dets.

        Susan

  28. I so identify with this story. I, too felt complete and utter rage and trying to figure out what was wrong with me for five (or more) years while doctors just thought losing weight and exercise would cure me. How sad. I’m glad you have your health back.

  29. Your story could be mine. I was bleeding for a year and they said it was because I needed to lose weight. I was just fat, and so my periods were screwed up, because “it’s not like it’s cancer.” One of the doctors said that to me. Anytime any friend of mine is having a medical issue and they just don’t feel right, but especially if the doctors say lose weight as the answer, then I tell them to keep pushing. I had a cancer, with symptoms for as long ago as TEN years, and it was constantly put off as I’m just fat. What’s worse, my cancer involved super hormones, which of course, make losing weight near impossible, and helped pack on pounds.

    I think fat shaming in the medical community is a serious issue – even now I’m experiencing high blood pressure, because of a medication, and it’s taken me physically getting my own medical records from the past years to prove to the doctors I don’t have high blood pressure, just because I’m fat. If I were 100 pounds lighter, I probably would have had something to combat the blood pressure already, but I’m fighting for three months now – progressively feeling worse and worse, because of a stupid medication, but the medical community assumes I deserve it because I’m fat, so obviously I should have high blood pressure.

  30. The fury you feel, is justified. The thankful thing is that it was eventually caught but the knowledge that it could have been fixed years before can’t be taken back. I can relate to the fury, to the “will you give my diet a break??”. I’ve been 10 to 20 lbs underweight since 2nd grade, I was also never hungry. My doctor had me drinking nutritional drinks that made me sick, she had me taking meds I didn’t need because the side effect was weight gain, or they treated the surface of my breathing issues. All the while not addressing / looking for the underlining cause of everything.

    When I was 14 a different doctor diagnosed me with CO2 Retention (in a nutshell, persistent CO2 poisoning). He suspected it had been going on for years because normally levels that high should have killed me. He gave us a list of symptoms to watch out for and my Mom was furious because each item she had complained about since I was 7 years old. Later on we found out my doctor suspected, or “unofficially” diagnosed me with it … to this day I don’t completely understand.

    After a couple months of treating the CO2 poisoning my symptoms were under control, including my appetite, and that year I gained a couple pounds. Two years later during my spinal fusion the surgeon realized my “good lung” was stuck to my rib cage and non-functioning. For the past 3 or 4 years I had been living off my “bad lung” – which explained my sudden need to use oxygen bottles – and some how no one ever caught that. He fixed it during the surgery and I came off the table healthier than I had been in years. That year I gained 12 lbs! I remember hopping into my Mom’s room one morning excited that I couldn’t get my jeans over my thighs.

    Maybe if she had worked with my other doctors more; if she had looked more out of the box and not so much on the surface, I wonder if things might have been different. In the end the one thing she kept trying to improve improved its self once the actual causes were fixed. I’m still under weight but I’m proportioned to my size, and I’m not looking to gain any more. Like you, I also live with fear; fear that something similar could happen again with my health and go untreated. Fear that my different doctors could unknowingly be working against each other because their focused on just their thing. If I notice things and speak up, I don’t want be ignored until I’m hospitalized again.

    I wish you so much love and luck on your journey. Don’t worry about being smiles all the time, because some stories shouldn’t be hidden behind them.

    – Courtney

  31. Thank you! Thank you for sharing. Thank you for baring your raw soul so others can get a glimpse into a struggle that almost took your life. Thank you for advocating for all us fat bitches, because we all know that not many people (even fellow fat bitches) do. Thank you for being strong. Fst shaming is real, its alive and well and its no better than any other form of prejudice. Here’s go those who choose to be themselves even when the whole world tells them they aren’t worthy. This is something I struggle with every day, and this story has given me hope. Thank you.

  32. Hi there,
    Great to here you are doing so well. Your story sounds similar to mine. Just wondered if it was neuro-endocrine cancer? This is what I’ve recently been diagnosed with (i am 40). I am having an op to remove half my left lung on the 1st. I have two young children and sm completely terrified. Best wishes xx

  33. Thank you for sharing your story, my friend went through a similar journey, with doctors not looking past her size.
    I wish her story had a happier end like yours 🙁
    But I’m grateful, that I had the time with her that I did, for your story, and for your recovery and hopefully your ever continued health.
    If you’d like to share my friends story to add more power to the point, please share it <3
    http://asdeal.blogspot.ca/2014/09/a-sad-story.html?m=1

  34. I am dreadfully sorry this happened to you…but I dont think it was anything to do with fat and your physicians. It was your youth. Doctors never seem to look for serious stuff in anyone young. I had serious sciatica myself at 20…my legs actually cut form under me…I was in outrageous pain. Doctor? Well he assumed I was malingering and after painkillers. He didnt even examine me.

    I remember on Michael Moore’s “Sicko” a girl who had cervical cancer at 22 and the insurance company informed her she was ‘too young’ to have it.

    Plus, you said you had a kind doc, who looked beyond your weight. She still didnt get to the root of it.
    Doctors, like it or not, have to tell you to lose weight. They are duty-bound to tell smokers to stop smoking too.

    And docs are human. They make mistakes.
    What needs to change, seems to me, is this attitude of ‘you are too young to be really ill’. They think you’re malingering and wanting to get off work.

  35. Am I missing something? It seems to me one (preventable) health issue masked another. I think you’re casting blame in the wrong direction.

    1. None of my bloodwork or any other tests indicated that I was unhealthy in any way. My pulmonary functions test even came back /normal/. ( even after my lung came out my pft still reads pretty much around where two lungs are.)

    2. Yes, you absolutely are missing something. You are missing the fact that a doctor who doesn’t even bother to look past the top layer and seek other potential causes for symptoms, especially symptoms that don’t respond to treatment, is not serving their patients to the best if their ability. You are missing the fact that fat people get other diseases too, and a good doctor won’t refuse to investigate things the same way they would in a not fat person, simply because of weight. You are missing the fact that looking at a fat person and dismissing all the things they have going on as simply being fat KILLS people from missed diagnoses all the time, and that that is not acceptable. You are also missing the fact that being fat is not always preventable. And you know what? You are missing compassion.

  36. Wow. I’m so happy you’re here, surviving & thriving to tell your tale, Mighty One!

    I have a slightly similar tale, but blessedly mine ended up with “only” a permanent disability instead of a chance of death…

    My GP was obsessed with weight. Every single time I walked in the door. What am I eating? Why am I eating it? On & on. Even when the purpose of my visit was entirely unrelated. I could be going in to talk about a hangnail & she’d find a way to turn the conversation around and tell me I’m too fat.

    Quite frankly, I (probably like you & most other people who carry excess weight) was very well aware of my weight. I NEVER forgot about it. God knows, I was never permitted by anyone in society – not even well intentioned family – to forget about my weight. So I got to the point where I just felt “beat down” and defeated. I just didn’t want to hear the lectures anymore.

    Like you, I had been experiencing issues off & on for years. My issue was back pain. My tiny mom had something similar, so I expected I’d inherited a genetic Chronic Pain Condition from her…but I knew it would be utterly futile ever convincing my doc that an issue with back pain would be anything else but due to “fat”. So I “toughed it out.”

    I have a very High Pain Tolerance – also inherited from my mom – so I ignored the pain with stretches & tylenol for a very long time. Until one day I woke up and realized I was at my breakng point. Suddenly the pain was so bad, getting out of bed caused me to literally scream in pain and the thought of the hour commute to & from the office was more than I could bear, forget about the workday.

    I had been to a nearby walk-in clinic for quick things (UTI Scripts, etc) & met a wonderful and caring new doctor who I learned would be soon taking on new patients and was biding my time to switch to her. Since I couldn’t get an official appointment yet, I had to go back to see her at the walk-in clinic. The minute I saw her smile I burst into tears! I told her my whole story of being fat shamed, avoiding the doctor & the crippling pain I was now in as a result. She was AMAZING. It was one of the first doctors who saw the patient first instead of the fat.

    It took a year of physical therapy, accupuncture, aqua therapy, specialists, surgeons, back injections & more prescriptions (including a round of steroids that made me gain another 70lbs!) than I can count before I was finally told my devastating news. I’d left it too long. I’d avoided the doctor for so long that I’d gone PAST THE POINT of it being operable. My condition was permanent. I wouldn’t be able to return to work & the career I loved and was advancing in was over at 38.

    Never have I let a doctor treat me as “less than” since. It cost me far too much. I square my shoulders & look them in the eyes. I FORCE them to see the patient if they’re unwilling to look. Once, when my doc was on maternity leave, I went to a walk-in near my home for asthma & a bad cold. I just needed my inhaler. But he saw FAT. And was sure my laboured breathng meant “heart problem”. He refused to write me a prescription & made me go to the freaking hospital emergency room! I was fairly close to yelling at him for being a fat shaming, discriminating pig. He was all smug telling me to come back & thank him for saving my life.

    4 hours later, I got a script for my asthma inhaler & a little vindication after the hospital doc called & yelled at him for sending me needlessly when they’re busy! Although 4 hours in hospital chairs kills my back & laid me out for 2 days…

    I wish doctors really understood the consequences of their prejudices.

    So happy you’re doing well now! Living well is the best revenge. I’m still workng towards that – hard to figure out what to do with myself that’s meaningful when i’m knocked out flat on a dime, but hopefully I’ll find the right volunteering fit.

  37. Thanks for the great article! I wish you continued good health. And babies if that’s where you want to go…

    I have an autoimmune disease – diagnosed 7 years ago. 
I am now 60 years old, but had symptoms dating back to age 25. 
When I was younger they were intermittent, and sometimes vague, so I do understand why I wasn’t diagnosed then. But by age 40, I had issues nearly all the time, and at 40 I had entered the middle-aged-woman zone where everything is attributed to your hormones.

    Years of doctors, and huge cost in medical bills, consistently I was diagnosed with middle-aged woman syndrome, it’s because you’re: 

    – depressed

    – mental case
    – a hypochondriac

    – you’re overweight – just lose weight (saying that “when this started I weighed 112 pounds” was met by disbelief)

    – hormones & peri-menopause
    – 
seeking pain meds (even though I refused to ever accept a prescription for pain meds even when offered)
    … 

yup, I know the story. Lose weight was the #1 recommendation every time.

    Exercise made it worse, sometimes so much worse that I couldn’t do anything for days afterwards if I overdid it even a little. And I like to be active – I love hiking and backpacking, roller-skating, or yah, sex, yup, like that too!
    
Simple blood tests would likely have led to a diagnosis many years earlier.

    In my case, it might not have made a huge difference in my actual physical condition at this point in my life (the course of my illness may have been the same since there wasn’t a lot to be done about my illness 35 years ago when I first developed symptoms, who knows), but maybe my family wouldn’t have thought I was mental or using drugs (tried to get me committed at one point) , several relationships might have lasted, I might have been able to keep the wholesale bakery I owned, and I wouldn’t have spent time feeling like maybe I was actually a hypochondriac. 

    It’s difficult staying positive when you are dealing with real illness but nobody believes you, including your doctors, and you have to convince people you’re not lazy, an overly-emotional PMS-y female, or selfish/self-centered (because you cancel at the last minute when you don’t feel well).

    Earlier in life, I had pelvic inflammatory disease – more than once – and it was never properly diagnosed. 
Again it was chocked up to my behavior rather than an actual physical problem, “Oh, intercourse is painful? You must not be getting sufficiently aroused before insertion…” 

    “Well, no, actually I already had an orgasm before we did the PV stuff, and I was very well lubricated. Maybe there is actually something wrong!”
    The doctor looks at me with skepticism.

    
I was only vindicated when I nearly died from an ectopic pregnancy that resulted in a ruptured fallopian tube. The nice female GYN resident [who believed me when] I told my history to her [in the emergency room], came back after the surgery and said that everything I had told her was 100% correct about where they would find scarring.
    Unfortunately, the multiple bouts of PID left me infertile.

    ———
    As a side note. 
I was a volunteer with the San Francisco Sex Information Hotline for 17 years, wearing many hats, including being on the staff that trained folks to answer questions on the phones. I also volunteered at a community free clinic, the National STD Hotline (called VD way back then), the SF AIDS Hotline, did in-service training on how to talk to folks about sex for the volunteers at the Berkeley Free Clinic and more…

  38. You are fucking amazing. My new hero. I get this too. I won’t go into it all (lol) but man I am glad you got through this cause you are the type of person we need in this world. That I need in this world.

  39. Saw this article on Everyday Feminism. Reading it, I could relate to it so much. I’ve had a similar process myself, except with my knee.

    It’s a long story, so I won’t bother with a lot of details, just that after falling and injuring my knee when I was 19, it took the doctors over six years to diagnose me with two tears in different places in my meniscus because they kept focusing on my being fat, even when I was losing weight and my knee pain was getting worse. I ended up having to scream at a nurse and a doctor and telling them flat out that if it WAS related to my weight, my knee SHOULD be getting better. And my other knee was FINE, so if it was weight-related, why is my other knee not hurting? It was so bad that I had to use the electric shopping carts to scoot around the store, and that was extremely embarrassing for me.

    Long story short, I was diagnosed with arthritis in my right knee when I was only 25, and was told that it would grow progressively worse. At least I can walk now, right?

  40. Im so glad you are doing better.

    Fat shaming int he medical society is ridiculous. A friend of mine past away a year ago due to a similar issue. She had a lump in her side and they just told her it was because she was fat. Then said she was whiny for pushing the issue further. Truth was she developed stage 4 sarcoma cancer, and it could have been prevented earlier if they just checked her out. We posted a similar story on our blog. Thank you for sharing your story and being so courageous!

    Jason – Pinupsforcancer.blogspot.com

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