Why Diagnoses Matter

If you’ve been diagnosed with a chronic illness or disability, you may have experienced doubt as to the importance of getting a diagnosis from people around you or in online spaces. I know I have and that’s why I wanted to discuss this topic and affirm why getting a diagnosis is important. But first, a story.

I had been about two years since I was diagnosed with hypermobile EDS. The signs were all there in my childhood: the intense growing pains in the legs common amongst many of us, knee and ankle problems requiring physiotherapy, hypermobility (which I didn’t know about until I was 30!), endometriosis, mental health issues…the list goes on. If you’re a zebra, you get it.

I despaired over my body for years, especially when my endometriosis flared during periods and when my digestive issues started. I wish I knew what was “wrong” with me!

When a physiotherapist suggested I be assessed for hypermobile EDS when I was 30, I was shocked that nobody had put the pieces together before. None of my previous PTs even told me about the hypermobility! And when I was finally diagnosed a year later, it was extremely validating. And the day before my appointment, I was telling a group of people how excited I was and one told me that I was hinging too much on this unnecessary appointment. You know, a lot of people have hypermobility and it doesn’t cause a problem so why bother?

Well first of all, EDS is way more than hypermobility. The two are not interchangeable diagnoses. They are separate. People with hypermobile EDS display so many more symptoms than just hypermobility. The impact of having defective collagen is widespread throughout the body.

The personal validation I felt when my diagnosis was confirmed was amazing. There was nothing “wrong” with me. I had a genetic defect which explained almost all of my health problems. I was not wrong, I was right! Victory!

In my opinion, this feeling of validation is the most important reason why pursuing a diagnosis is valid and necessary. Usually getting a diagnosis provides information and an explanation. It’s a deepening in the knowledge of ourselves. My body does this because of this. This condition is connected, and this is not, and these are adjustments I need to make.

The second biggest reason is because with knowledge comes a path, treatment options, a way forward. Even for something like hEDS which does not really have much in the way of medical treatments. It means understanding the causes of certain things and being able to approach them in new a novel ways. EDS treatment usually focuses on physical therapy, but there’s a large number of these patients who take charge of their own physical conditioning and with knowledge of a diagnosis, they can find the best way to approach for them and their bodies.

The third reason is because our society is an ableist hellscape and not having to grind one’s (disabled) body to death just for the chance to live. Receiving a disability diagnosis and accepting that as part of me has allowed me to take the rest I need. To slow my life down to the pace it needs to be for me. Having a piece of paper that validates me is nice because having to battle with doctors is difficult enough but the rest of society is just terrible about it.

As you can see from my story above, people will always doubt whether getting a diagnosis is worth the trouble and effort or whether it matters at all. It does matter. Some people avoid diagnoses, saying that labels just harm. A diagnosis is not a label, though. It’s knowledge, it’s confidence, it’s validation. It’s a good thing. Go forth and get diagnosed and give the finger to the doubters.

Managing Life and Wellness with Premenstrual Dysphoric Disorder

About 5 years ago, I was experiencing a cyclical issue that I couldn’t figure out but was causing some terrible symptoms. Migraines, a deeper depression than I normally live with day to day, and some extreme anger. I initially went to the doctor because I was afraid that I was displaying some signs of Bipolar Disorder, but I was actually diagnosed with Premenstrual Dysphoric Disorder.

Symptoms

The symptoms of PMDD are extreme mood swings, increased depression and anxiety, migraines, extreme fatigue, painful menstruation, and other bodily and mental pains. For more info on symptoms, go here (I’m sorry that the language is not gender inclusive. I didn’t write it.)

The trouble with PMDD is that the symptoms are very similar to PMS and they occur around the same time during one’s menstrual cycle. However, PMS is not as extreme as PMDD. The mood swings with PMDD are extreme. I am not usually a very angry person. I have a lot of patience. But when my PMDD is flaring, I get and stay very angry and impatient for several days. And then it just disappears and I wake up in the morning one day and I feel normal again. Another clue to PMDD is hormonal migraines. I am very aware of my menstrual cycle and I usually get a migraine when I ovulate and then a few days before my period actually starts. And then my period is over and I’m back to normal for a couple of weeks.

Surviving with PMDD

The biggest struggle for PMDD for me is that half the month, I feel totally useless and down. It feels like I get two weeks to be normal and then I have to struggle for two weeks through migraines and body pains and anger. And on top of that, Hypermobile EDS does not play well with the hormonal changes in the second half of the menstrual cycle either. So what do I do??

I think that the best tactic is to do what you can when you can. As I type this, I’m in the first half of my fertility cycle. I feel very much like myself and honestly, I wouldn’t be able to even write a blog post when my PMDD is flaring up. So when it isn’t, I take full advantage of being able to be more active and of having the mental clarity to do things like writing or programming or studying. This way, I get things done and take care of myself, which paves the way for increased self-care when I need it after I ovulate. During those times, I may need more sleep, I may need gentler forms of exercise like yoga or stretching or walking. I may not even be able to do those things and that is ok! It is fine to rest. Take it day to day. If you’re not also struggling with a disability that also affects your day to day life, then PMDD may only take a few days out of your month. It is even more vital then to take rests when you need to. Your body is asking for it. So remove guilt from the equation, hunker down, give yourself grace, and wait.

The treatment of PMDD is fairly basic, involving both anti-depressants and hormonal birth control. Together these both stabilize the mood and hormones, making the hormonal shift easier to survive. Eating well and exercising are also recommended. Nutrition may play a role in the severity of the condition as there is some evidence that deficiencies of certain substances can make it worse (read more about the supplement recommendations in the article above. Talk to your doctor, I’m not a doctor, I’m not responsible, etc.). Exercise and conditioning can help too, mitigating pain, decreasing stress, and helping to even out hormonal levels.

Unfortunately, PMDD can last from when it develops until menopause. Does that suck a whole lot? Fuck yeah! That’s why it’s even more important to take care of yourself. You have 20-30 years of this possibly?? Taking 2-3 days a month to survive is allowed and encouraged. Yes, this may impact your social life and the dishes may go undone for a couple days. Do not feel guilty! This is a terrible disorder and quite frankly, if you’re making it through, you’re a MFing rock star to me!

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Podcast Resources: Episodes 2&3

Hey everyone! So here are the sources I used for my 2 podcast episodes on Fatphobia/BoPo/Fat Liberation. I highly recommend you take a look through them after listening to the episodes because there is a lot of information out there. If possible, definitely read the book by Sabrina Strings. It is an amazing breakdown of the origin of racial tensions and fatphobia in Western culture.

Episode 2:

Fearing the Black Body by Sabrina Strings

Fat Phobia Affects Everyone by Sabrina Strings (article regarding the content of the book referenced above)

6 Tools For Understanding and Dismantling Weight Stigma and Fatphobia by Gillian Brown

Episode 3:

https://en.wikipedia.org/wiki/Body_positivity

Black Women Started The Body Positivity Movement, But White Women Corrupted It by Danielle Jennings

The Feminist History of Fat Liberation by Sarah Simon

Why I’m Trading Body Positivity for Fat Acceptance by Amee Severson

The Fat Acceptance Movement: Answers to 5 Important Questions by Ashley Laderer

Why I Cancelled My Planet Fitness Membership.

Today I stood in front of the trainer at Planet Fitness and had to admit to her why I was cancelling my membership. I mumbled something about not agreeing with the “Biggest Loser thing” but I suddenly felt like I was going to get in trouble. She couldn’t put in an option for “other” under reason for cancellation so we just put down that I moved. We did move six months ago and I have room for a home gym in our garage which is what I’m working on setting up. But, after we did that she said she was genuinely curious to hear about my opinion on TBL. So I told her. And I’ll tell you, but first some background.

The Biggest Loser has been an inspiration to many people. Over ten years ago, I was one of those people. I lost weight and I did alright at keeping it off. I loved watching the people on the show hit their goals and encourage each other. But now we know that the methods used on the show are dangerous and harmful. It is not safe to lose that much weight that fast. And doing it requires constant exercise and near starvation. This is not sustainable. And you’d see later on when they were visiting people at their homes, exactly how hard it is to sustain that weight loss in a real world setting. Because we have jobs and kids and get sick and shit comes up. It’s also really difficult to see people eating normally while you’re starving yourself. Especially if what you’ve historically done is eat as much as you want in those same settings.

This is not a matter of willpower. The truth is that we need to eat, and we’re usually enjoying the company of others when we do. Eating is a communal human activity. It is significant in every single culture. Diet culture tells us this is wrong, but social health is just as important as, if not more important than, lowering our weight to an arbitrary number. I’m not saying that you need to eat socially to bond with people. Just that if you’re with a group of people, there’s probably gonna be food there. And why wouldn’t you want to enjoy yourself? And no I don’t want to hear about, “well they deserve it for getting so fat”. Hard pass on that fatphobic bullshit.

One person I really admire that has been a vocal critic of TBL is former contestant Kai Hibbard. She went on the show to lose weight and came out with an eating disorder and severe injuries. She has given a glimpse of the behind the scenes of the show and it is not good. They starved and dehydrated contestants. They were verbally abused by the trainers. There have even been accusations of them being dosed with medications to speed up their weight loss. If you’re interested in this topic I highly recommend reading her book and following her on Facebook and other social media.

Now that I’ve sad all that, we come back to me and the trainer at Planet Fitness talking while I was cancelling. I told her, you know, I don’t support the Biggest Loser because it does more harm than good. A lot of the people regain the weight and they just spread ignorant and dangerous methods. She said that she would pass that along and look up some of the stuff I told her about.

It was difficult to me to stand up and speak the truth out loud. And I didn’t even get to the worst part of it for me: Plant Fitness says that their gyms are non-judgmental. But that’s hypocritical if they are sponsoring The Biggest Loser. That game show is the essence of judgment. They spread the lie that it is better to starve and beat yourself into a smaller body than to exist in a bigger one. They tell society that you do not have worth and do not deserve respect or dignity if you are fat. Does that sound non-judgmental to you?

If you can, I urge you to cancel your PF membership if you have one. And tell them why. Align yourself with the oppressed and speak up for them. And if you have a membership and you have to keep it because of whatever, reason, that’s fine. But you still have a voice and you can still use it. So please, say something! And if they change their ways, then maybe I’ll see you there again one day.

-Amanda                                                                                

How Hormonal Changes Affect hEDS

When I gave birth to my son a little over 6 years ago is when my EDS became worse enough to start causing severe enough problems that eventually led to a diagnosis. One thing I started noticing after my diagnosis was that my joint issues flared around the time I got my period. I have seen mentions of this from many people who menstruate and have hEDS too. It’s a pretty common question in the EDS groups I’m in too! So what’s it all about?

(Please note that I am doing my best to use gender inclusive language in this post; please correct me if I can improve something)

The effects of hormonal changes will be more pronounced for people with uteruses because the monthly hormonal changes themselves are more pronounced. People with penises tend to have more stable hormones, and even if they were experiencing hormonal changes, men tend to have more muscle mass than women. This is assuming a person assigned male at birth; trans hormones are more complex than this and a trans man or trans woman will have different hormonal considerations. So those of us who menstruate will experience more hormonal changes and also deal with less muscle mass to protect those joints (depending on fitness level of course). If you are ovulating, then you will experience a slight hormonal change from then until you begin menstruating. At some point, the level of progesterone becomes higher than the level of estrogen. Estrogen is what would usually protect the connective tissues from the loosening effects of progesterone. If at this time you menstruate, eventually the progesterone level will go down, estrogen will become more dominant again, and the increased pain and laxity will go away. If you are pregnant, the progesterone level will stay elevated until the pregnancy is over.

Pregnancy considerations aside, what does this fluctuation mean for our poor connective tissues? It means that for 2-3 weeks out of the month, we will have normal levels of laxity. Then, in the several days leading up to menstruation we will have increased laxity, leading to increased pain and possibility of injury, until a few days into menstruation. For a more detailed medical explanation of all of this including birth control considerations, go here. (A note about birth control: the author recommends avoiding progestin only birth control. However if you, like me, have migraines with aura, this may be your only option for birth control. I have not found any issues from it but that’s a choice you have to make with your doctor about what’s best for you considering ALL of your medical conditions. I use the mini pill to control PMDD which is more important than possible increased joint laxity).

SO. What do we do? If you’re like me, you may have enough going on around the time of your menstruation that you become a tortured hermit. And that’s ok! It’s enough to just survive sometimes. Therefore, what becomes most important is what we do outside of this time period. Working on joint stabilization through resistance exercise is going to be really important. It may not lessen the pain much but it could be the key to avoiding dislocations during this time. I do have more subluxations during that week but I have managed to largely avoid full dislocation. You also want to make sure that your self-care is prepared in advance. Having any medications you need filled, basic life tasks done or easy to do, someone to help you out with chores, stuff for pain relief like bath supplies, heating pads, creams you like (love my icy hot roller when my spine is acting up!), and of course snacks and shows to watch. Think PMS prep but on steroids!

The most important thing in my opinion is noticing what’s coming and recognizing it and then giving yourself grace. You may not accomplish much during this time, especially if your joint issues get bad enough that you can’t move around much. Regardless if it’s from pain or fatigue, please be gentle with yourself. Your risk of injury is increased when you feel this way. If you push yourself too hard then you could end up with a serious injury and then you will be forced to rest even longer. You know your body best and so you may be able to do whatever you need to. But if you know you can’t, then don’t. And do not feel bad about that. Anyone who judges you because “It’s just a period” can actually be told to fuck right off!

I hope this is helpful. What I want you to take away from this is that you are not imagining things. There is a scientific explanation of what is happening during “that time of the month”. Some of you may be wondering, does this hormonal shit storm continue into our menopausal years? The answer is yes! Super awesome, eh?? Not really. I’ll be covering that at another point in the future. For now if you have any questions or comments, leave em here!

-Amanda