How Fatphobia Threatened My Life With Chronic Illness

It’s appointment day. I have many appointment days each month, and I dread every single one of them. I stand naked in front of my mirror, aggressively grabbing and shaking my stomach, pulling the loose skin on my arms, my salted tears crusted on my face, I desperately attempt to prepare myself for being let down by my doctors again.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Before I get into my life after being properly diagnosed, I want to share my story from the years prior to now. Getting diagnosed and accurately treated did not happen overnight; it was a decade of hell I had to endure, and for many fat people, they are still undiagnosed, invalidated or even dead due to discriminatory neglect, particularly BIPOC women. My story is not over. I know I will experience more fatphobic medical horror in my lifetime. I still do, but I want people to understand the hell I went through so I can inspire others to never put people through this again.

I was 19 back in 2013, where up north at my university I was rapidly developing my most alarming health symptoms that to this day have not gone away. I started experiencing debilitating fatigue, dizziness, lightheadedness, vertigo, vision issues, brain fog, pre-syncope and syncope. I would faint in my home. I would faint in the snow when walking to work. I would get dizzy during class and have to excuse myself to the bathroom for the last 15 minutes. I was experiencing such severe dizziness that one day I decided to go to the ER. I was terrified. I felt like I could never sit up, stand up, stay awake, or even remotely function without fearing I would pass out, fall or get very sick. The doctor took one look at me, saw my weight and my mental illnesses in my chart, and immediately told me I needed to lose weight and see a therapist for my anxiety and post-traumatic stress disorder (PTSD). He did not perform a single test, no echocardiogram, no labs, nothing. Eventually my health was in such poor shape, I had to drop out. My fainting decreased after moving home, but only because I was bed bound or completely home bound for the vast majority of the years to follow. I may not have been fainting anymore, but my dizziness and severe fatigue had not improved.

Fast forward a few months, and I was covered in hives from head to toe, my face swelling every morning. I was told I had chronic allergies and to work on my diet and lose weight. To this day, I still do not know what causes my allergies to be so severe. Seeing a psychiatrist, I was on medications causing extreme  weight gain. Struggling with debilitating self-esteem and internalized fatphobia, I begged and pleaded for my doctor to take me off the medications making me gain weight and she yelled at me, “well, would you rather be fat and happy or skinny and miserable for the rest of your life?” While it was uncalled for how she treated me, I do wish I listened to her, but I mostly wish other doctors would have listened to her. Because she was right, why deprive myself of mental stability because of my internal fears of being fat? I was 19, vulnerable, trying desperately to look like the people my age, and doctor after doctor only seemed to see my weight as a negative anyway, so why should I believe this grumpy old psychiatrist?

One year later, I was diagnosed with fibromyalgia, ME/CFS and IBS. While I do still have those illnesses, I now know what caused them and that it’s so much more. When diagnosed with ME/CFS and fibromyalgia, I was only tested for lupus and rheumatoid arthritis. Once tested negative, they gave up looking for anything else, blamed my weight for it worsening, and blamed my mental health for the severity of my pain. When diagnosed with IBS, my gastroenterologist just told me to lose weight, watch my diet, cut food after food out. Not only were diets hard for my body and my budget, I still did not lose weight, I only got sicker and fatter. At 21 years old, after doctors not taking my stomach problems seriously, I had to have emergency surgery to remove my gallbladder as well as finding very high liver enzymes. Had I been taken seriously from the start, this could have been prevented. I felt like maybe they were right, maybe I am in pain because I am fat and depressed. Maybe it is my fault.

I lived the next five or six years going to doctor after doctor, begging and pleading for additional help, begging for someone to listen, for someone to look past my weight. Begging for someone, if they cared so much about my fatness, to maybe for once see if it is something out of my control causing it. I lived all of my early and mid 20s sick and blaming myself for all of my ailments. I’ve had so many doctors deny me services, deny me testing, deny me even 10 minutes of their time to listen, because they take one look at my body and immediately place the blame on me. I’ve had gynecologists tell me my extremely heavy periods were due to my weight. I’ve had pain management doctors encourage and push for exercise which only made my dizziness, post-exertion malaise and injuries worse. I’ve had doctors push for weight loss surgeries despite me telling them my inability to already hold down food. After almost a decade of fighting for answers and validation, I wanted to give up. But I knew I’d die if I did. I had to learn to be assertive and fight back.

Over the last year, because of my demand for doctors to listen, because of my lack of fear of requesting new doctors, because I demand to be heard, I now finally have accurate diagnoses. After years of my weight and mental health being blamed, I am now finally diagnosed with hypermobile Ehlers-Danlos syndrome, something that I was shut down for years because of the false assumption that only thin people can have it. I was diagnosed with postural orthostatic tachycardia (POTS) eight years after when I first started to experience symptoms, which, again, stems from the Ehlers-Danlos syndrome. Because I went so long undiagnosed, on top of my fibromyalgia and ME/CFS, I have 27 years worth of constant injury, pain and poor treatment leading me to irreparable damage such as small fiber neuropathy that is rapidly progressing, bursitis in both hips, arthritis, and I am reaching out to orthopedic doctors to take a look at my neck and shoulders.

Had I been diagnosed early on, I would not have nearly as many irreparable complications and chronic pain conditions as I do now. Because I went years of undiagnosed GI issues, although I still do not know the cause of my bowel problems, I found out that I have Barrett’s esophagus: a complication from chronic and persistent GERD causing your esophagus to grow the wrong tissue over the burns and damage. I have migraines, poor skin healing and infections, insomnia, allergies, hearing loss, and a litany of other problems that can all be explained and tied back to my Ehlers-Danlos syndrome, many of which could have been prevented or slowed down had I been taken seriously from the beginning.

At 27 years old, I finally have a better understanding of my health problems, but that took years of me fighting tooth and nail to finally get answers. I would go years in my life where I wanted to give up because I was so fed up with how doctors were treating me (or rather, not treating me) because I am fat. While I am grateful now for having the answers and my medical team, I also grieve over the years of my life I have lost because of how long I went untreated. I grieve over the illnesses I have now that could’ve been prevented had I just gotten diagnosed sooner. I grieve over the decades worth of medical trauma that haunt me daily.

Along with my long overdue Ehlers-Danlos syndrome and laundry list of illnesses that took me almost a decade to finally find out about, I also found out that on top of my weight gain from my struggle with medication side effects, I have Hashimoto’s disease that has gone untreated. I was finally told by a doctor that a large portion of my weight gain over the years was not my fault. My immune system is attacking my thyroid making it underactive and dysfunctional, leaving me with so many serious symptoms that have gone overlooked until now. If doctors care so much about weight, then why don’t they see weight gain as a symptom of something serious and not a punishment of poor health? Why do they place blame on the individual and not on the system that has failed us and led to so much suffering and years of invalidation and neglect? When will the perpetuated bias be dismantled once and for all? And especially when will that be the case for other plus size minorities such as plus size Black women in particular? When will it be our time to take over and be heard?

Not only am I privileged to finally have answers, I am also privileged to be alive. I may have irreparable damage and complications that could have been prevented if doctors took me seriously, but there are so many who are far less fortunate than me who die from illnesses unrelated to their fatness, but from neglect and never properly diagnosed until it was too late. My demand and need for a better healthcare system does not stop at just dismantling the fatphobia, it’s also dismantling the racism and classism and all other minorities affected by neglect, bias and medical violence. We deserve to get answers right away. We deserve to not be blamed for our poor health to the point where our families are digging our graves. We deserve to be part of your healthcare. We deserve to be in your research. We deserve to live.