Monday, August 29, 2016

Body Shaming and Chronic Illness

One of the first things I heard when I started this illness journey was that my body was attacking itself.  And that rather than fighting off foreign invaders, my body was mistaking my own organs and joints as things that weren’t actually supposed to be there.

While that provides a somewhat easy explanation for a very complicated process of what’s going on, it’s a profoundly negative thing to be told.  And it sticks with you. 

We are told that our bodies are attacking themselves.  We are told that we must have done something along the way that caused this to happen. 

I’ve never been the most confident person in the world.  I’ve been self-conscious most of my life.  And THEN I got sick.    

But with all of this stuff going on, I never really had to worry about my weight.  If anything, I had to be worried about being underweight.  And then, slowly, my weight crept up.

I felt like I was stuck in a rut.  While I used to look at some pictures of me in high school and think I was chubby, I know now that I really wasn’t.  And I was so fixated on gaining the “Freshman 15” in college that I inadvertently lost 15 pounds.    

At my lowest since high school, when I first went to my rheumatologist, I weighed in at 86 pounds.  I know now that, that definitely wasn’t healthy.  And part of my lack of eating was the amount of pain I was in.  That had a lot to do with it.  It wasn’t that, that was my goal all along, to weigh 86 pounds.  And until about five years ago, I never topped out at more than 98 pounds.  Then things changed.  And the number kept going up and up.  When I went to the doctor in February, I weighed in at 121 pounds.  It was the most I have ever weighed in my whole life, and I was completely disgusted with myself.    

That number on the scale was the kick in the pants that I needed to do something about it.  And it wasn’t just the number on the scale.  It was the way I felt.  It was the fact that I could barely look in the mirror let alone consider letting another human being see me without clothes on.  No one in my life was explicitly telling me that I was fat, but I could tell by some of the looks I got that people thought I had gained weight, and I had.  This doesn’t really hit you until you start losing weight and people tell you how great you look.    

So in June, I joined Weight Watchers.  It’s not so much that I wanted to diet, as much as whatever I was doing myself – mainly eating as many carbs and as few fruits and vegetables as possible – wasn’t working.  Sure, it didn’t help that eight years ago I got sick, two years ago my dad died, eight months ago I lost my job and my boyfriend of three and a half years broke up with me, and I moved back to Michigan; jobless, boyfriend-less, and otherwise confused about where my life was headed.  Who would blame me if pizza became my go-to food? 

But I’ve had to do something, and I’ve tried to look at this whole experience as more of a lifestyle change than a diet. 

But I assure you, there is no judgment towards other people.  I know some people I have talked to have looked at me and said “I would kill to weigh what you weighed at your highest.”  But that’s not what it’s about.  It’s about the fact that I didn’t feel like I looked good, and I didn’t feel good, physically or emotionally.  That extra weight was literally and figuratively weighing me down.  

But slowly, I’m working on turning my negative self-talk into positive self-talk.  I can actually look at myself in the mirror again, and shocker, kind of like what I see.  I’ve lost almost 13 pounds, which puts me almost at the high end of my goal.  I know 13 pounds isn’t a lot, but it is for me.  It’s actually 10% of my starting weight.  But honestly, and I keep having to tell myself this – the pounds don’t matter, the percentage doesn’t matter, as much as how I feel, physically and emotionally, matters.    

I hate when my rheumatologist asks me if I’m exercising.  Because it’s not code for “are you moving enough?”  It’s code for “get off your butt and move, you fat ass”.  Trust me, I’ve known him long enough to know that, that’s exactly what he’s saying.  And rather than retort back, “And what’s your excuse?” I smile and nod, and pretend that what he said hasn’t hurt me at all, when clearly, it has. 

I don’t think I’ll ever hit below the 100 pound mark again, but who am I kidding?  I’m 31 years old.  It’s not as easy as it used to be.  Seriously, at 25, it all started going downhill. 

So from the very beginning of our illness journeys, we are fed information about our bodies that our profoundly negative.  And we are expected, despite the pain, despite the stiffness, despite the medications and their side effects, despite whatever else in life might happen besides our illnesses, to rise above, and do it with a smile and all while looking great, all like you would never know we were sick.    


  1. It's definitely hard to love yourself when you're chronically ill. I have a hard time loving my body because I feel it doesn't love me back.

  2. You sound so depressed. I understand completely what it is like to be diagnosed with RA - I wasn't quite as young as you, I was 28, in grad school at Stanford and raising 2 kids as a single parent. (No child support - he was a Penn law grad and knew how to get out of it). I was under a lot of stress. The brain dead, cruel MD who called me on the phone to tell me I had tested positive for the RA factor and my RA was severe and crippling and I should think of giving my kids to their father since a cripple could not care for them was perhaps the one medical pro who initiated me into self help. I had as much free Stanford med care as I wanted and found out it was worth what I was paying for. I holed up in the med school library reading journals and med texts, learning what my doctors knew and then visited a variety of health food stores and interviewed them for what people with RA took. From this I designed my own protocol, turned down drugs, got verbally abused by my Stanford doc for that, and cured myself. I refused to define myself as a patient, as chronically ill and to align myself with people who said, "There is no cure." Every problem has an answer - we just need to find it. I did and it took a year to be completely symptom free but clawed hands and painful hips were gone, never to return. Today, I would do low dose naltrexone as it cures RA but I didn't know about it then. Gaining weight? That happened years later during a period of great emotional stress - I lost the weight - 30 lbs. I stay away from doctors, ride my bike, hike, and if a med problem comes up, I research, diagnose and design a protocol. That included almost a decade of chronic neck pain that I finally found the reason for when no one else could. I certainly hope you don't define yourself as a patient, as ill, and incurable. The medical community has no interest in anything other than what they know and it is not enough. And taking that abuse from your doctor - I need to ask - why??? Why in the world take that crap? he doesn't seem to be helping you physically so what's the point of taking his verbal and emotional abuse? How can you heal with this toxic environment. But congrats on beginning to tun it around, and the efforts into losing weight - bravo! I know it isn't easy - so why not make it easier on yourself? BTW, the kids stayed with me - we all made it through - (they gave me comic books to make me laugh because I told them laughter helps the immune system. Trust me, comic books are not to be scoffed at when used as medicine!) One of the main lessons I learned about RA was that inflammation was the root cause and diet was critical. I cut out meat, coffee, alcohol, carbs, sugar. The result was a slow but noticeable reduction in pain - this wasn't all I did but I started that right away. Eventually the only thing never to return was meat. Sugar? Very little. Carbs - very little. But coffee came back and so did a drink now and then. But haven't had any meat, chicken or fish since. I'm veg, not vegan. And I cured my RA. It can be done.