Trigger Warning: rape, death of a parent, victim-blaming, suicide, drugs, food, trauma
My mother had fibromyalgia, and I remember growing up watching her suffer with the pain, the fatigue, the ever-changing trial and error of treatments- not to mention the social factors involved with being disabled with an illness not all health care providers know about or acknowledge.
My own symptoms started when I hit puberty at the bright and early age of eight. I remember feeling so sick and exhausted and sore and staying in bed for a month because I felt sick. I went through tons of tests, but they found nothing. “Depression”, they told my mother. “Snap out of it”, they told me.
My symptoms got worse as I got older- especially after my mother died when I was fifteen and after I was raped when I was seventeen. The emotional stress triggered severe new symptoms, and living became too much. The combination of emotional and physical pain was more than seventeen year old me could handle, and I made my most serious suicide attempt. Friends found me lying on the bathroom floor, and I was transported to a hospital. I don’t remember anything until waking up the next day and ripping the IV out of my arm- furious to be alive. This only confirmed what doctors had always told me- I’m depressed. Here, have some meds.
I’m not going to go into describing all of my symptoms, because that would be exhausting and I’m using a ton of spoons as it is. If you feel it’s important for you to know so that you can relate better or whatever, feel free to ask.
I left my hometown as soon as I graduated high school- away from the people who had known my mother, whose absence was (still is!) indescribably devastating. Away from the people who called me a slut, who told me I asked for being raped, told me it was my fault, told me I was full of shit. Away from all the people I’d fucked hoping I could feel something other than pain. Away from all the friends who stood back and did nothing as I spiraled into self hate. Away from a place where I was one of the only out queer students, where I was harassed for who I choose to fuck. I don’t go back there anymore. Not only had all these fucked up things happened to me, but my body was trying to kill me, I could have sworn.
I spent the first two years of university regaining my emotional and mental health, making new friends, formulating dreams, passionately involving myself in activism so that I could fight to change things for people who were going through the things that I had been through. The summer between second and third year of university, I was hit by a car while crossing the street. Hard. My physical health continued to get worse, and getting through my days was so incredibly painful and uncomfortable that I finally made the decision to go through the frustrating process of medical testing so I could figure out what was going on. I’d watched my mom go through this, and that within itself was triggering- but I was tired of living this way. I was ready to take control of my own life.
Well, fast forward through two years of vigorous research (I’m a huge research nerd), ~10-20 different doctors, natural medicine, ~50 different pharmaceutical medications, many (often painful) tests, vitamin supplements, injections, pain clinics, various types of physical and mental therapy, and much more.. Here are the things I have discovered:
(disclaimer: This is an account of my personal experience, which is based on educated opinion and trial and error. I’m not saying it will work for anyone else, but I believe strongly that it’s worth a try- and anyone with fibro will tell you, they’ve tried a fuckton of things. I also have the privilege of having been under my dad’s health care plan while in university, and of living in Canada, where health care is generally pretty affordable.)
Fibromyalgia is real.
Some doctors will not acknowledge fibromyalgia as real, because there is no way to test for it aside from elimination of any other possible health issues that way cause symptoms.
This is not the case. From the research I’ve done, and from my own lived experience, it seems that fibromyalgia is the manifestation of a group of symptoms that have some sort of underlying cause-that cause is just usually unknown. Finally, only a few months ago, I found a doctor who is interested in looking outside of the box a little. He managed to figure out that all of my health problems (fibromyalgia, chronic fatigue syndrome, arthritis, neuropathy, hypoglycemia, hypothyroidism) are caused by mitochondrial disease. This literally explains every fibro symptom. There is a blood test for mitochondrial functioning that I highly recommend folks ask their doctors about. Mitochondria are some interesting little organelles that are responsible for A LOT!
Fibromyalgia is trauma-based.
There’s no concrete answer to what causes fibromyalgia, but after tons of research (books, internet, chatrooms and message boards, doctors, studies, reciprocal stories of lived experience) the common denominator appears to be trauma.
When you undergo some sort of physical trauma (ie: car accident, a fall) or emotional trauma (ie: abuse, death of a loved one) your body responds with the same chemicals to allow your body to go into “fight or flight” mode. Basically, if you are genetically predisposed to some sort of health problem that may trigger fibromyalgia and you undergo trauma (especially repeated trauma or multiple instances of trauma) your brain goes, “woah, dude. You’re asking me to make a lot of these chemicals, that can’t be right. I’m gonna make minimal amounts now instead”…so your body always thinks it’s going through trauma and does not release the same chemicals to deal with it as a person who doesn’t have fibro.
Get off drugs.
The medical care system’s response to fibromyalgia is drugs. Anti-depressants, benzos, opioids, opiates, nerve blockers and more.
Now, listen. Some people need drugs to live. Some people need drugs to increase their quality of lives. Some people need drugs because they do not want to make other changes to their lives, and drugs are an easy and effective way for them to live their lives. Above all else, I believe that everyone should have the choice to use drugs any way they please.
However, in my personal experience in treating my fibromyalgia, drugs have only ever made me sicker. Part of what mitochondria do is they filter out the crap from your cells so they can use good stuff to make energy. If your fibromyalgia is triggered by mitochondrial disease or disfunction like mine is, taking medication will just overload your body with toxins. If you are able to replace taking drugs with the lifestyle changes that will follow, I highly recommend doing so. Or at least giving it a try. do not intend to shame anyone who needs to or chooses to use drugs to treat fibromyalgia (or anything else), but it would be unfair to write this whole list about how to heal from/ learn to live with fibromyalgia without addressing one of the most important aspects of my journey with it.
Drugs also do not allow you to access the deepest levels of your consciousness, in my opinion and experience, which is vital to the mental and emotional health that is innately tied to your physical health and well-being.
Yes, this includes alcohol and other “street” drugs as well as pharmaceutical drugs.
Take care of your mental and emotional well-being.
We live in a world that is oppressive and induces a ton of trauma. I don’t think there are many, if any, folks who have no been traumatized in some way. Trauma is central to fibromyalgia. So, in radically healing yourself, it’s important to get to that root and work through the traumas you’ve experienced in your life. Guess what? You fucking deserve it. You deserve to feel good
Personally, I’ve done CBT, feminist narrative therapy, and energy therapy. They were all very helpful in different ways. If you can’t afford private therapy sessions, look into community support groups, or call your local mental health services and ask them what kind of options are out there that may work on a sliding scale or for free. They will often have resources to suggest. If you can’t find anything at all, consider forming a support group of your own.
Get together a solid support network.
You will need support while going through this process. It takes a huge toll, both physically and emotionally to live with this disease, and you should not have to go through it alone. Ask supportive people in your life (partners, parents, siblings, close friends, aunts, uncles, grandparents, centres for students with disabilities, therapists, professors, teachers, doctors) to support you in your management of your illness. Try to figure out specific ways they can physically and emotionally be there for you. They will need support as well, or they’ll get burnt out and you’ll both feel shitty. This is important.
Here’s an example of a few ways my partner supports me:
- we communicate about my energy levels using spoon theory
- he is supportive (though he doesn’t police) my lifestyle changes/eating habits
- he is mindful of my ability levels
- he attends doctor’s appointments with me
- he learned to release my trigger points
Maintain a solid bedtime.
Go to sleep and wake up at the same time every day. This is really hard. Especially if you’re in your early twenties, like I am. But seriously. It makes the biggest difference in pain and energy levels, as well as other symptoms like memory and concentration.
Diet and Nutrition.
Figure out what your food intolerances are, and stick to a very strict diet. This has been the single most important method of managing my illnesses.
Your intolerances may be different than mine, but I will share mine with you anyway, since they are all common to fibromyalgia.
Gluten. It increases inflammation in the body. Three days after going off gluten, I was off pain meds. Seriously. Plus it’s all GMO and gross and not really good for you anyway. You’ll feel so much better.
Nightshades. There jerks are full of alkalines, which apparently our bodies don’t usually like. Tomato, potato, zucchini, banana, peppers, eggplant. Don’t do it. Infammation sucks.
Sugar. Lots of people with fibro are hypoglycemic. When we eat sugar, especially processed sugar, our bodies are all, “WOAH I’M GONNA OCK SOME SUUUPER HIGH BLOOD SUGAR! OH WAIT, I CAN’T PROCESS THAT….OKAY CRAAAAAASH” and then life sucks. Cutting out sugar is REALLY FUCKING HARD because it’s in everything. As you can see, this has been a big deal for me because mmmm sugar. Coconut sugar is a great (though expensive) alternative that doesn’t affect glycemic index.
Things that are good for us: dark, leafy greens, iron, high protein, organic
Supplements and vitamins.
Vitamin D has made a HUGE difference in my pain levels, and has also really helped my depression and anxiety. Omega 3 and 6 help my pain a lot, as well as my energy. Iron makes a big difference in energy levels (if it makes you constipated, take it with magnesium).
Heat and water therapy.
Heat (ie: hot water bottles) are very helpful for sore muscles and cramps. Warm/hot water is even better. Find out if your city/town has a therapy pool with warm temperatures. Often they will also have wheel chair access and provide swimming belts, which are great for floating around of water-walking/running and take pressure off your joints and muscles. Don’t over-do it. Remember, the gentler the better. You don’t want to overexert yourself and cause a flare up.
Again, this is just what has worked for me. I feel so much better, and I’ve been off drugs (and living according to this plan) for nearly a year. I’m healthier, happier, and am proud of myself for committing to my level of ability rather than what is expected of me because of the ableist society I’m situated in. I still have a long ways to go in my healing, but I’m working towards it. Isn’t life a perpetual process??
I hope some people can find help in what I’ve written here. Thanks for reading~
This is a 15 page document about chronic pain and communication. I have found it extremely useful, especially the sections containing techniques for dealing with critical people in your life. The document contains the following:
- A Definition of Communication
- A Model of Communication
- Breakdowns in Communication
- Styles of Communication
- Information Communicated in Messages (instrumental vs affective)
- Ways of Maintaining Communication
- Invitations to talk (door openers)
- Active Listening
- Communication & Chronic Pain Behavior
- Effect of Pain on Communication
- Effect of Communicating Pain Behavior
- Assertive Inquiry
- Broken Record
- Content-To-Process Shift
I have a severe lack of knowledge about EDS and someone I care about has it. Spreading awareness and educating myself! Pass it on.
WHAT IS EHLERS-DANLOS SYNDROME? :
Ehlers-Danlos Syndrome (EDS) comes in six major types, each with varying symptoms. Generally, those with EDS have very hypermobile joints, which can partially and fully dislocate very easily. This is caused by a defect in our collagen and can be unbearably painful.
The defect in the collagen also causes a multitude of other problems in our bodies, after all, collagen is necessary for our skin, joints, muscles, ligaments, blood vessels and even our organs.
It is a lifelong condition that affects children through adults, and there is no cure at this point in time.
WHY DOES IT NEED AWARENESS? :
There is a SEVERE lack of knowledge and understanding, not just from family and friends, but from medical professionals too. A lot of us do not receive the proper tests and treatment we need. Not only can this be damaging to the mental health of the patient, but it can also put the lives of those who have not been diagnosed in serious danger.
PLEASE RE-BLOG FOR TO SPREAD AWARENESS AND SUPPORT ALL OF THE AMAZINGLY STRONG PEOPLE WHO HAVE TO LIVE WITH THIS CONDITION EVERY DAY.
Another post from Sins Invalid
Sins Invalid is a performance project that incubates and celebrates artists with disabilities, centralizing artists of color and queer and gender-variant artists as communities who have been historically marginalized.
I saw part of their show in Toronto and it was outstanding. Would love to see a whole show live.
Contains adult language and content .
My name is Karen and I’m a sociology postgraduate student at the University of Glasgow, Scotland. For my Masters dissertation, I am conducting research on the topic of asexuality and disability: specifically exploring the experiences of people who self-identify as asexual and have a disability, and looking at the ways in which asexuality and disability might ‘intersect’. I’m recruiting people to take part in an online (individual) interview with myself – and I was hoping that some of you might be interested in taking part!
I am interesting in hearing from folks all along the asexuality spectrum, and of all genders, relationship orientations, nationalities etc. I am also working with a broad definition of ‘disability’ – what is important is that you consider yourself to be a disabled person, or that you consider yourself to be disabled in some way.
It’s also really really important that you are over the age of 18!
If you think you might be interested, you can send me an email at email@example.com and I’ll then send you a plain language information sheet which will give you a lot more details about the study (as well as my full name, contact details for my supervisor and University ethics committee). Once you have read that you can decide whether or not you want to take part. By contacting me you are in no way committing yourself to taking part - and if after reading the information sheet you decide that it is not for you, then that’s absolutely fine too! I’m also more than happy to address any questions or concerns that you might have about the research.
Thanks very much for reading this – and I hope to speak to some of you soon!
sore as fuck, but matching bra and underwear, anyone?
ZINE SUBMISSION CALL OUT: “A HOW TO GUIDE IN LOVING AND CARING FOR A MAD PERSON: an unapologetic and intersectional feminist tool kit in disability justice”
(C IT, REBLOG IT!!)
HELLO tumblr world.
I am putting together a zine on people’s experience with mental health/illness/madness etc and how they / they were supported/loved/cared/lived with /for/by/ their partners/lovers/family members/ friends etc.
Want to participate? Please have photocopiable material submitted to firstname.lastname@example.org by the deadline MAY 1st - 2nd !!
(Source: witchmagicgirl, via )