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I’m Disabled but Don’t Police My Fitness

Getting a diagnosis for Ehlers-Danlos or any other chronic illness can be quite the mountain to climb. But what happens when you get to the top and begin the descent of learning to live with the diagnosis? I’m going to be doing a series of how to adjust to life with a labelled disability. Today though, I’d like to talk about the exercise aspect of things (to nobody’s surprise!).

Specific to EDS, there are some recommendations the medical community will make to a newly diagnosed patient. There will be some movement restrictions such as no running, no heavy lifting, no heavy cardio, no high impact activities. The reason for this is because these activities have a higher impact on the joints and muscles, areas of the body which are directly affected by the genetic defect that causes EDS. Yoga is also discouraged as it can sometimes prompt us to stretch too far and that does need to be avoided if you have hypermobility. There is also a high comorbidity of dysautonomia amongst EDS patients. This includes Postural Orthostatic Tachycardia Syndrome (POTS) and Mast Cell Activation Syndrome (MCAS). These can be triggered by intense activity among other things.

So there is some reason to ask EDS patients to be careful with their activities. But is there enough to ask every one of these patients to give up exercise and then police them for that?

To be fair, most of the policing comes from other EDS patients, and not the medical community. I was in physical therapy before my diagnosis for a couple injuries and it was my PT that suggested I be evaluated for hypermobile EDS. It was also her that encouraged me to get back in the gym to manage my hypermobility. Since then, I absolutely notice a difference in my pain levels and subluxation occurrences when I take more than a few weeks off from exercise. I am very confident in my routine, which does include yoga from time to time, especially as a warmup or off day activity.

I help admin a Facebook group for athletes who have EDS. I help others with EDS to use exercise to help manage their chronic pain. I encourage others like me to find a form of exercise that works for them while listening to and honouring their bodies. I personally think that the benefits of exercise should no be given up because you have limitations to deal with. That’s why I do what I do!

Unfortunately, there will always be people who will criticize others who are doing what they want and not “following the rules”. Recently I had an experience in a group that focuses on calling out ableism. I mentioned that I have hEDS and I workout and do yoga. Someone proceeded to accuse me of playing doctor and telling EDS patients that they don’t need to listen to their doctors. Apparently me doing yoga is attacking the entire medical establishment and saying doctors don’t know what they’re talking about?

I can tell you one thing, which is that I respect doctors fully. However, my doctor doesn’t live inside of MY body. This is my home and I’m allowed to do what I want with it. The people who come to me for my professional guidance have already made a choice. I am not a doctor, I know that. But I have extensive knowledge, not just as a trainer or graduate student, but as a disabled person myself.

My professional advice will always be this: do what is best for your body and don’t fucking police someone else for their choice of physical activity. Living with a chronic illness that involves a lot of pain is difficult enough already without people making you feel guilt for taking care of yourself the best way you can.

I hear constantly from others with hEDS that physical activity reduces their pain levels and allows them to do more and feel better mentally as well as physically. With all of the obstacles already facing us, why not use every tool to hopefully stave off any other health problems we could be facing down the road?

The bottom line is this: disabled bodies are policed enough from everywhere. Please fucking stop it. Trust me. I know my body. You know yours. We’re all just trying our best.

Why you should hire a disabled personal trainer.

When you think of a personal trainer, what do you picture in your mind? I’m assuming there’s a lot of muscles, low body fat, ripped abs, etc? At least, that’s what the fitness industry convinces personal trainers they need to look like or they’ll never get any clients. If you can’t walk the walk, then why would anyone want to work with you?

There is a section of the fitness industry that is ignoring these arbitrary standards and these people are becoming trainers, coaches, and teachers regardless of what their body looks like. There are fat trainers, athletes, and yoga teachers these days. I personally love filling my social media with people who are breaking these barriers and making a new path to invite everyone into the fitness world.

While I love my fellow big bodied people breaking stereotypes, when I search for disabled personal trainers, I find a distinct lack of options. Instead, I find a lot of information for trainers who are working with disabled people which is nice, but I feel like it’s lacking. Is there an assumption that only abled people can understand how to train people properly and well?

I polled my Facebook friends on this. I asked them: would you hire a disabled personal trainer? I got only positive responses, with several friends confirming that what someone’s body looks like does not determine their knowledge and that for them, the expertise mattered more. So I thought I’d compile a few reasons why you may purposefully hire a disabled personal trainer even if you are not disabled yourself.

They are passionate.

I became a personal trainer to help people improve their lives. I continue being a trainer even though I now have a disability because I cannot give that dream up. Now I focus more on functional fitness and helping people supplement their lives with fitness, but my passion remains the same.

They have more intense knowledge.       

My experience with hypermobile Ehlers Danlos Syndrome has increased my awareness of how our bodies are so interconnected and how one tight muscle can affect something somewhere else. One of my clients has learned a lot about this from me since we started working together over a year ago, and she is always astounded by how a muscle she’s not even using is working because she’s doing a simple isolation move. The truth is that your body is anything but simple. It is a complex machine. Who knows better how to work a machine than the one who has to deal with a busted one all the time?

They have the credentials.

Regardless of what some people might say, credentials do matter. Some personal trainer certifications are much more difficult to get than others. For instance, if someone has a CSCS, it means they have already met a certain level of qualifications to even sit for that test, and have then passed it. I got my Masters in Sports and Health Sciences because I love learning and wanted to formally increase my knowledge. Likewise, experience is a form of credentials in my opinion. Does the trainer you’re considering have experience and formal education through school or reputable certifications? Then maybe it doesn’t matter if they’re a little fluffy around the middle or use a cane to maintain mobility.

They will listen to you.

Do you remember The Biggest Loser? Screaming trainers pushing puking fat people past any reasonable limit? Not caring about injuries? Pushing the boundaries of health and legality to achieve any modicum of weight loss? I feel as though a generation of personal trainers were inspired by this terrible example and thus tend to push their clients beyond what is necessary. Maybe the reason you think exercise sucks is because a trainer in the past has done this to you or it’s the only example you’ve seen. Listen. You don’t have to do Crossfit or a million burpees or be half dead at the end of your workout to have it be worth it. And if you told me that you’re not feeling something today, fine. Skip your workout and take care of you.

There are also a lot of examples out there of people who are joining a gym because they want to get fit and do not care about losing weight but their goals are not respected and they still have things like weight loss shoved in their faces. Bodily autonomy is very important in the disability world and for me, that includes the goals you have for your body. I recently wrote another post on how I’m so tired of weight loss. So maybe finding a trainer who lives outside the box would be safer for you than someone who may not always respect your goals or may think you’ll eventually change your mind (yes they’re out there, yes it’s gross).

They may be more accepting and compassionate.

Being disabled is an existence of marginalization. I have received so much acceptance from my fellow disabled people, and they tend to extend acceptance to other marginalized groups. Obviously this one is on a case by case basis because anyone can be nasty, but at least with me you know you’re accepted because everyone is welcome around here.

You jive with them.

Getting along with your trainer is extremely important. Finding someone who gets you and who you connect with is vital. Communication needs to be open and respectful. They need to listen to you and you need to be teachable. It is give and take on both sides. You are a team. I’d urge you to give a trainer a chance if all the above is in place and you get along with them, even if they don’t look like a typical personal trainer.

You’ll be supporting intersectionality.      

Obviously this one is personal. It may not matter to you but if you’re here, then it probably does. Supporting increased diversity in the fitness industry is extremely important at this point in time. The industry is sexist, ableist, racist, homophobic, transphobic, and altogether a total damn disaster. We need more diversity in it. Furthermore, financially contributing to a disabled person is a form of social justice. Disability benefits? Seriously extremely difficult to get and are barely enough to live on. If social justice is important to you, support a marginalized trainer from any group that society constantly shits on.

That’s my full list! I would love to hear from you on this topic. Would you hire a disabled trainer? Have you in the past? Maybe you’ve had a coach or trainer who lives outside acceptable body norms and I’d love to hear about it!

Amanda

A Weight Loss Confession

I’d like to start this with an apology. I have, in the past, been active in the promotion of fatphobia. One way I did this was by selling weight loss to people and for that, I have regrets. It’s a false hope, a potentially dangerous undertaking, and it doesn’t help many people in the end.

I continue to get the question, “do you do weight loss”, and I must admit something:

I AM TIRED OF THINKING ABOUT WEIGHT LOSS.

Whether this weight loss is my own or a clients’, honestly I am so over it. There is so much going on in the world. So much that cannot be helped by me micromanaging my calorie intake.

For me, the truth is that my weight has been stable for the last 5 years. It has not budged. This has not been a conscious decision. What has changed is my body fat level, and I think that is, to me, personally more important to my health. And as a side not, when I was several sizes larger, I also weighed twenty pounds less, so take from that what you will. The truth is that I can maintain this weight without even thinking about it, and that is good for my mental health.

Look, there are thousands of personal trainers out there who do weight loss. There are programs with coaches and points and everything you could ever want to convince yourself that this time it will work long-term. But I don’t want you to be counting out single almonds or saving calories or points or agonizing over a piece of birthday cake for the rest of your life. Doesn’t that sound exhausting? I’m exhausted from thinking about weight loss all the time. For me or for others. Don’t you want to do anything else? Have legs strong enough to climb a mountain? Go on a long leisurely bike ride down by the river? Go swimming for hours at the beach with your kid? Have strong arms to plant a whole ass beautiful garden? I don’t believe that health and fitness should be the focus of life. Honestly, one single minute/moment/second could take you from healthy to unhealthy. Health is not everything. It’s especially not the only thing. There’s a lot more to life. Your health and fitness habits should support the rest of your life. They shouldn’t become your life.

What it comes down to is that I don’t want to focus on weight loss. I want to help you build the life you want, supported by fitness. You are not your body. Your body allows you to do the things you desire. What could you achieve if you let go of weight loss?

“Leggings aren’t pants” is ableist. Stop it.

Ah, “leggings aren’t pants” has been around for quite a while now. Leggings weren’t quite the hot button issue they are now when I was younger but they’ve slowly become much more ubiquitous, especially since I became a mother six years ago. Or maybe that’s just when I started paying attention because #leggingsforlife, right?

Ever since they became a “thing” in popular culture, there’s been the debate. Are leggings pants? Should you make sure your buns are covered with a long shirt or that you’re wearing undies that won’t show a pantyline? Why do we police what others are wearing so much? Let’s chat.

First off, right out of the gate. What are pants? Generally they have two leg holes and you pull them up and they sit around your hips. I mean, envision some pants. Google it if necessary. So, by definition, leggings are pants. But obviously there’s more to this issue than just definitions.

This is kind of what I’m envisioning for my definition of “pants”. Original artwork masterpiece by me obvs.

Second argument? They’re too revealing. Too tight. Show. Too. Much. How dare you show your body’s shape. I don’t think I need to tell you that this argument is a total load of crap. You do not need to be ashamed of your body’s shape. You have a booty. You have some kind of something in your crotch. I don’t know your body, but I do know that if you want to wear leggings, you should. You don’t need to hide. You don’t even actually need those super thin, seamless panties that cost $18 each just to hide the fact that you’re wearing underwear. NEWSFLASH WORLD. Many people wear underpants, this isn’t weird.

Alright, that’s my facetiousness out of the way. Here’s what I really wanted to say. Saying that leggings aren’t pants is ableist and we all need to stop regardless.

Women are usually the ones wearing leggings so I’m going to focus on women’s clothing for a bit. Please note that I fully support men and anyone else wearing leggings because gendered clothing is silly and it doesn’t even matter who is wearing them but I digress.

Women’s clothing is uncomfortable. It’s impractical, you can’t move in it, most of it doesn’t even have functional pockets. It’s reaching some absurd levels honestly. I started wearing leggings in earnest after I became a mom because they’re functional. I can move. I can bend without my booty popping out for a visit with the other moms at the park. Who remembers bending down in high school and then standing up and having to hoist your jeans back up by the belt loops. Be honest, I am not the only one. I saw you all do the same thing!

Even with comfort aside, leggings are supremely practical for people with disabilities. If you’re sitting in a wheelchair a lot, maybe you want something comfy to be in that doesn’t involve buttons digging into your belly. Maybe you want something easy to adjust or to get off and on. If you have mobility issues, maybe you don’t need restrictive denim on top of that. For me, I find the compression of leggings to be very helpful in supporting my joints and the softness a lot better than denim on my fragile EDS skin. They’re also a lot better if I’m in a flare and sitting on the couch in severe pain all day.

I’ve been thinking about this a lot and clothing policing has a lot to do with body policing. Do you remember What Not To Wear? I loved it so much. But as I got older, I realized that shoving everyone into the same clothing box is really terrible. Just because I’m curvy doesn’t mean I want to hide my body or camouflage certain bits. I don’t need to highlight this and solve that. I need to wear what’s best for me and what makes me feel comfortable and fits my body best in the way that makes me feel best.

So what’s the solution to this problem? It’s simply yet another example of policing other people’s bodies and prescribing random standards that hold some back. Even if you’re not disabled, you deserve to dress your body comfortably. So the solution is to tell anyone who says that leggings aren’t pants to stop being an ableist jackass. People can wear what they want. People can wear what’s best for their body. That’s it.

Thoughts on Before and After Pictures

Before and Afters. They have a constant presence in the world of fitness. Almost every program out there begins with ‘take your before pictures’. From the front, from the side, from behind. You’ll need them to reference how much you’ve brought your body in line with society’s ridiculous expectations!

Okay, that was a bit much. Especially since I’ve taken before and afters of myself and others so I don’t have much of a leg to stand on here. But I don’t use them anymore and here’s why:

Life is built on more important before and afters than the ones you take at either end of a fitness program.

One of the most important before and afters I have experienced in my life is ‘before and after having my son’ who empowered me to become my true self. Or ‘before and after getting married’ that helped me lose my naivete and gave me many adventures across this continent. Or ‘before and after my EDS diagnosis’ when all of my physical and mental ailments finally started making sense.

I know that you have been through many important before and afters to, but do the ones that come to mind involve being half-naked for evaluation by strangers on how skinny you got?

The truth is, I don’t think there should be a ‘before and after’ fitness. I don’t think you should be killing yourself for 12 weeks in order to take a picture and go back to reality. I think you should find a trainer or philosophy or programming that takes you way beyond that. It should be a constant, something that you return to after breaks and are able to follow easily when you are able to exercise.

And honestly, our bodies naturally vary their size and shape over the course of our lives, regardless of what program we are following. I am a few sizes bigger than before I gave birth, but a few sizes smaller than what I was in the year or two directly after that experience. I am more muscular than I was as a teen, when I hardly experienced puberty’s effects on my shape until I was almost 20. I remember the thinness of my youth and the large belly that grew my large baby. My body will continue to change as I’m only 32. I’ll keep getting grey hairs and wrinkles and my body might get more or less muscular or thinner or bigger or fatter, and that’s just what happens. What I’m more concerned with is that I can keep being functional in my everyday life and there will never be an ‘after’ for that.