Sunday, February 16, 2014

Feminism and Endometriosis

Some people think that feminism and endometriosis have absolutely nothing to do with one another. Others think that the two subjects are impossible to separate, having a cyclical nature of profound effects and response. More likely, you might not have contemplated the relationship between the two. Personally, I just want to put out some of my thoughts on the matter because it is driving me crazy how endometriosis is negatively affected by gender inequality and I want to clarify why.

First though, what do I define as feminism? Do I define it as a misandristic paradise with men as the prime target for subjugation? A movement that died out in the 70's? Or something relegated to women's studies in college? I prefer to see feminism as synonymous with the equalist movement. An effort towards gender equality in all things possible. Most socialism definitions recognize that third-wave (read, non-radical) feminism has moved past being an only-female focused movement, moving towards equality in general. I recognize valuable differences and contributions each gender makes towards to society and simply want to fix inequalities in areas where they have no business being, in which they artificially reduce our potential as a society (such as in the work place, the home, and many other opportunities).

The nice thing about the change in third-wave feminism is that it aims to benefit both women and men. By reducing the burdens of unhealthy archetype for masculinity, it helps men of all kinds explore their potential in a safer environment than fifty years ago. And being a feminist does not mean I disparage any sort of preferred lifestyle or choices. If a woman wants to be a stay at home mom, more power to her, and if a guy is chivalrous, I take it as a complement. Honestly, I'm a better cook than my boyfriend, so I tend to cook dinners for him, and once in a while he takes me out on a nice date where he holds doors open for me and pays for the meal (sometimes he'll let me pay for him though!). We both work, we live separately, and we each bring our own talents to the relationship. We have a mutual respect for one another. That's what I think feminism is--respecting and refusing to limit a gender based on false short comings.

Forgive the explanatory tangent, but it was necessary for understanding my viewpoint on this next part. How does this tie into endometriosis? If you have read my other posts, I am not an individual that purposely seeks out controversial subjects to stir up interest. I do not inject political agenda into my posts. So why now? The truth is, I am tired of seeing the relationship between sexism and endometriosis glossed over, and I want to verbalize my own perspectives so maybe others can acknowledge their own on the matter.

Current research indicates that the prevalence of Endometriosis ranks at around 10% of women, in forms ranging from mild to severe. That's 5% of the population. For some perspective, 2.8% of the global population has diabetes, 8.4% prevalence of asthma in the USA, and less than 1% for autism spectrum disorder. In the USA, if you consider both diabetes types together, up until age 50 the prevalence is still about 3.7%. Multiple Sclerosis is at 0.085%. 3% (by age 80) will receive a diagnosis of epilepsy by age 80.

The point of these statistics is not me trying to downplay any of these other diseases. I have asthma, and it's landed me in the ER several times. I feel major sympathy for those whose lives are stalled by a diagnosis of MS. The point of stating these statistics is that these diseases/disorders are regularly tested for when the symptoms present. These are diseases that everyone has heard of. Yet 5% of the population has Endometriosis, and no one but those effected by it have even heard of it. And it takes an median of 9 years for a woman presenting symptoms to be tested for Endometriosis by her doctor.

For example, even when my sibling had already been diagnosed with Endometriosis and I had been showing symptoms from my first menstrual cycle, none of my doctors would even consider checking for it until I was 21. And even then it was accidental, during a surgery for cyst removal and appendicitis. Yes, I had a cyst the size of an orange and they still were dismissing my suspicions. I was spoken to as a hypochondriac and belittled by any doctor I suggested the possibility to.

Ok, but just because Endometriosis is not as well known as it should be, does not mean it is tied into gender inequality, right? I mean, look at Breast Cancer--the disease's current status a great example of a successful campaign to raise awareness about a serious, primarily female disease. So I cannot just use lack of awareness as support for my argument. And I won't.

Gender inequality in medicine is a huge problem, and it affects both sexes. In regards to men, they are often denied needed treatment for mental disorders (such as depression) because of societal, toxic pressures to 'be a man' and not let emotions get in the way of things. When facing mood disorders, men feel disproportionate pressure and shame to shake off their struggles and move on. This often leads to alcohol abuse, as a way of coping and self medicating, and can consequently lead to alcoholism and the physical complications of long term alcohol poisoning.

The female effects of gender inequality in medicine are even more damaging. Women, in particular, are not taken seriously or respected when they communicate the experience of severe pain. In fact, they are often ignored. Women are less likely to be given pain killers for the same pain indications as men, primarily because they are simply regarded as likely to exaggerate, having a low pain tolerance, or just seen as 'whiney'. So when you have a female disease that is largely indicated by severe pain, it is likely to be ignored, unconsidered, and brushed aside.

In our medical world, no woman, no person, should have to go through 9 years of severe symptom presentation before they are diagnosed. Breast cancer incidence is less than 0.1%, yet women are constantly screened and educated. I am not dismissing the consequence of untreated breast cancer being death, and I recognize the health industry has a clear motivation for encouraging this education. Just last year, my mother had a double mastectomy from breast cancer, I am not trying to belittle it or say, 'no big deal'. But when you look at the emotional, physical, financial, and overall quality of life toll of endometriosis, where 1/10 women are affected, you have to scratch your head and wonder, "Why doesn't my doctor warn me about this? Why doesn't my doctor know more about it?".

I had to change gynecologists about 10 times before I found one who finally knew more about endometriosis than I did, and he is a national specialist. That is absurd--I am not a doctor and I do not pretend to be, I should not know more than one. My GP doctors often have to educated about basic aspects of it, and sometimes they have attempted to prescribe me medication that has been proven to intensify the complications of Endometriosis. With it being such a common affliction, it should be in the basic database of most practitioners. Even if the majority afflicted are likely to 'only experience worsened cramping and bleeding', they have a right to know the cause and how to approach treatment. Dismissing the pain and recommending a bottle of advil does not point a patient in the direction of actual relief. It's masking a symptom one cannot be bothered to investigate, leaving the woman vulnerable to further complications down the road.

The lack of initiative on the medical side fuels the lack of awareness in the general population. When you have so many with Endometriosis undiagnosed, it is less likely for people and family/friends to even know that they are directly affected by it. How is a campaign for awareness supposed to work when the doctors do not even care about efficient diagnosis? And campaigns for female-only afflictions are usually hampered to begin with, so where to even start? There are a few large endometriosis organizations, but they barely have enough funds to fund research, and awareness is non-existent.

As a last parting, I am going to narrate my own experiences of direct, unfiltered experience of sexism as an aware, educated endometriosis patient. I went to an old GP and asked for an ultrasound, as I was in an area where I had not yet found an OB/GYN and had felt another, large cyst growing. His response? "Cysts are a common problem in women, you need to learn how to handle and get over your female problems" and he denied me a referral for an ultrasound. He laughed when I said I had Endometriosis and said it was not a big deal. I wish I was exaggerating. I was too young and naive to realize how awful he was. Another doctor, a female OB/GYN was seen because I has having extreme cervical pain and nonstop bleeding, and I was worried my cervix was adhered or scarred or something of that nature, trying to find out what I could do to be in less pain. A summation of the experience: Her: "You have an STD", Mine: "but I'm a virgin, with Endometriosis," Her: "No, you have an STD." She refused to change my hormone medications, tested me for STDs, which were of course negative. She then talked about hypersensitivity and how I was mentally causing the pain. I did not return to her for the consult about the new hormones. Half my doctors told me I was exaggerating my pain, the other half regarded me as a hypochondriac. I work in medical research, I know what I deserve as a patient. I know every patient, male and female, receives some degree of belittlement from the health industry. But I also know when I was receiving less than acceptable care because of my gender. Oh, and let's not forget the refusal to consider a hysterectomy because I needed to have my own babies to be a whole woman (one doctor even laughed and said I did not know what I wanted because I was too young to have 'baby fever').

Endometriosis has a lot of problems, like lack of awareness and difficulty to detect/treat. But these problems and those specifically related to gender inequality would improve, if the sexism would in regards to treatment was addressed and improved (and maybe someday fixed).

I know I need to cite many of these stats/claims, and I will. Most are directly from studies or articles discussing them, but I am very sick and tired today so I just don't have the energy. The rage and frustration I felt just from writing this drained what little energy I have. For now, please just think about it, challenge what you see as questionable (I recommend Google Scholar for searches). You do not have to agree with my opinions, but I hope you will consider them.

Saturday, February 8, 2014

Butternut Squash Soup

Am I really getting back to recipes? Yes! Why? Because I figured out my problem--I've been lazy. Really lazy. So, my offer, my apology, is my delicious gluten-free butternut squash recipe! I make it in a crockpot (simple and easy) but you can adjust it for a stovetop dish. It will take shorter but the flavor might not be as strong.

  • An average sized butternut squash. Use a large one if you want the squash thicker, a smaller one if you want it thinner.
  • A quart of organic, gluten-free chicken stock
  • 1/2-to-3/4 tsp Better than Bouillon (gluten free & organic)
  • 1 tsp of thyme
  • 1 tsp of basil 
  • 1 tsp of oregano
  • 1 tbs butter
  • dash of pepper
  • 1-2 tbs olive oil
  • 4 chopped cloves of garlic (or 4 tsp of minced jarred garlic) 
  • 1/2 cup chopped onion (I prefer yellow)
  • Optional: extra 1/2 tsp of above spices 
  • 3/4 cup organic heavy whipping cream
  • dash of cumin
  • dash of nutmeg
  • Red pepper flakes to serve

  1. Wash the butternut squash (I prefer Citrus Magic, Veggie Wash, but you can make your own homemade stuff as well!). Cut it in half (horizontally), then cut off the stem and root. Three cuts total. 
  2. Peel the skin off. I use a paring knife. Be patient!
  3. Cut the peeled squash in half vertically. Scoop out the stringy insides and seeds. 
  4. Cube the peeled squash. Place the cubes in the crockpot. 
  5. Pour in the chicken stock and add the spices. Set the crockpot on high. 
  6. Chop the garlic and the onion. 
  7. Place the butter and olive oil in saute pan. Set the stove to medium low. 
  8. Wait for the butter to melt and spread evenly over the pan.
  9. Add the garlic, wait a minute for it heat. Add the onion. Optional: add the extra 1/2 tsp of first three spices.
  10. Cook the onion until it has yellowed/browned slightly. 
  11. Tip the saute contents into the stock pot, using a rubber spatula to scrap everything in. Mix the contents.
  12. Replace the stockpot lid, let everything cook until the squash is easily shmooshed. Took me about 3-4 hours. Add a dash of cumin and nutmeg. Cayenne pepper is yummy too!
  13. You now have two options: blend or smash. I took a wooden spoon, smashed the squash, then used an egg beater to smash everything up nice and shmooshed. It had a nice texture to it and I liked it. However, if you're a smooth textured individual, I recommend transferring the soup to a blender or (even better) using an immersion blender. 
  14. Garnish with red pepper flakes to serve. Choose how much based on your own spice preference. 

Thursday, February 6, 2014

Held to an Unfair Standard

When you are chronically ill, it seems like every time you pick up a normal bug, you’re held to a higher standard by both your body and the people around you. As far as your body is concerned, it already has a fulltime job managing your chronic illness, and throwing in a flu bug is an unauthorized increase in overtime. Every day, under normal conditions, an ill body does its absolute best to maintain homeostasis with a rickety system. By throwing a wrench in an already struggling system, you run a higher risk of it coming to a grotesque, massive, horrific, catastrophe.

Of course, dealing with the finicky nature of a dysfunctional human body is apparently not enough. In addition to the unforgiving body you are operating in, you have friends, family, and coworkers who are already near their threshold of ‘dealing with your crap’. Not that they don’t care. They can care quite a bit about you. But a relationship requires some give and take, and it can feel to them that they are not often on the receiving side. When coworkers have to cover your shifts, when friends have to constantly give you rides, and when family feels it can never ask for favors, only dole them out, that can be wearing. It takes good, kind, and uncommonly patient individuals to recognize the special qualities a chronically ill person can bring to the table.

When I get something as simple as a cold, I panic. I know that even if I take my medications, am religious with vitamins and supplements, I will almost certainly get bronchitis. It’s part of having asthma. But that’s not all I panic about—in the back of my head, I worry about the people I love and interact with and wonder, ‘Is this going to be the straw that breaks the camel’s back?’  I’ve cashed in too many favors, broken too many commitments, they’re going to be done with me. 

I hate thinking that way. I hate how often I look at my friendships and look at myself as a burden. I try to focus on my helpful qualities that make me a valued friend—that I’m a good listener, am accepting, patient, and have a strong desire to help. That I’m goofy and relaxed and will always try to make the ordinary more fun. But I cannot help but worry. I look at my relationships like I look at my body—that a common illness or flare up is going to tip it over the edge.

This kind of anxiety does not help anything or anyone though. I know it may be easy to say that, but when something unexpected happens, it can be hard to actually feel that way. To be calm about what’s happening and not look at it as ‘the last straw’. But I’ve begun to wonder though, if maybe that kind of thinking is what makes it ‘the last straw’.

If I’m really honest with myself, that sort of thinking is selfish. It automatically assumes what people in my life feel, what they can and can’t handle, and what they need. It assigns and projects my feelings onto the people around me. And rather than trying to do something about that feeling, it is sort of a surrendering attitude that precludes any efforts to help the situation. And it is a way to protect myself from feeling disappointed.

People have, in the past, gotten sick of being around ‘someone sick’ and punished me for a situation I cannot help (and would give anything to change). I have lost friends, been bullied, and been shut out. I try my best not to hold too much anger and bitterness against the friends who could not handle my situation. They were not strong enough. And they could not see my efforts to counterbalance the strain that my illness put on our relationship.

On the bright side, the friends that I have years in, the associations that I’ve formed now, have stood many tests that my illness can put on relationship. I know that they are real. And I owe myself and the people in my life a chance to be tested by the challenges my body brings. Not only do I owe them trust when I am feeling sick, but I should be giving them extra love, attention, and effort when I am feeling well. Not solely because I am ‘setting the balance’, but because I am happy to have a chance to show them the same care and attention they give me when I need it.

I think people who are ill feel this anxiety with relationships that there is a balance, like a bank account, and they are constantly overdrawing. But no one likes to feel like a favor bank--and that is exactly how friends feel when you constantly worry over this 'balance'. Just be a good friend, a good coworker, a good family member. When you are sick, feeling blah, feeling good, and when you are ill. Needing extra help does not make you a bad friend. It can be hard to remember, but people who understand your condition know what they are getting into when they decide to associate with you. And if you do not give them the opportunity to support you in your time of need... then you’re not really trusting them to be your friend, are you?

I have a lot of people in my life that I choose to be close to. And while many of them may be sick of my sickness, I don’t feel like they’re sick of me.

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About The BedRiddenHead

I want to be happy. And this site is about that chance. How to strive to thrive in the body I've got and maybe turn my experiences into something worthwhile.

This site aims to help educate and reach out to people all over that struggle with pain or illness. To try and make something helpful. I work as a medical research writer, my background is in neuropsychology and biology, and I want to share what I learn in a way that is easy to understand. I am not a doctor. I'm definitely not your doctor. I am just some lady who wants to make someone's (anyone's) life a little bit better. Whether you have endometriosis, a chronic injury, a struggling friend, or just want to learn something new, I hope to make a place that has what you are looking for.

Thank you for stopping by, I wish you strength in your health and happiness.