What I wish I’d been told after being sexually assaulted.

I was 19 years old. I was enjoying the fun and excitement of my first ‘casual sex’ or ‘friends with benefits’ type situation. Something that I believe both men and women have the right to experience as an enjoyable, empowering experience. That being said I was 19 and naive with a life that made me particularly at risk for choosing less than ideal men to be in my life, including ones that only lowered my already very low self-worth. It turns out I also chose to surround myself with friends that only lowered my self-worth as well.

I realize that no 19 year old, or anyone really, knows exactly what to do for another person (or for themselves) after they’ve been assaulted. However, I feel like there are a few things that should be common sense that apparently are not. I never did do a really great job of standing up to these so called friends at the time, and I don’t see the point in standing up to them now after all of these years – they may have changed between then and now but I have a hunch that most of them are the same shitty, low-vibe human beings they were almost 8 years ago. So instead, naturally I’ve turned to my blog to teach other people how to have what should be common sense in these situations, and basically just how not to be a shit friend.

Go to the ER: I was in shock for months after this happened to me, trying to come up with any plausible explanation for the event that would make it not be rape. I did not want to believe that someone whom I had considered a friend, someone who I invited into my home, into my family and friend Christmas gatherings, into my social circle, into my body, could do this to me. I was too busy searching every corner of my mind for a different outcome to even think to go to the ER for a rape kit or even to check me for STD’s or give me plan B or simply make sure that physically I was okay.

Call the police: I waited almost a year to finally report this incident, and partially because of this there was lack of evidence to prosecute. The man who did this to me is now married (with my ex-best friends in his wedding party) and last I heard possibly has or is having a kid. He has never paid any price for what he did to me besides the obvious damage that it would do to his soul. He did apologize to me once, so I know he understands that what he did was wrong, and he has to live with that for the rest of his life. Even though Crown Council did not take this to trial it is on record for anyone who reports him in the future, and I do believe that he has done this before and will do it again. This is why anyone who is assaulted needs to report it even if it won’t make it to court.

You’re not going to be okay for a very long time, but one day you will be: I didn’t think I’d ever be okay again. But I am. I am definitely changed and scarred but I’m also healed and wiser. My chest no longer burns like an open wound and is now a dull ache. A reminder of what once was, and how if I can overcome that then I truly can overcome anything. The validation and honesty that comes with this sentence is huge to a survivor, or at least it would have been to me.

I believe you, and I’m here for you: I needed someone to be outraged for me. Someone who’s emotion validated everything I was experiencing. When I reached out to my friends completely lost and confused, telling them what had happened to me as if I wasn’t even sure I believed it myself, I needed someone to say “Wow! That is so wrong. I am so sorry, I love you, I believe you, I am angry for you, let me help you.” At the time I didn’t have the type of friends who can see outside of themselves for long enough to be outraged for anyone. In fact, some of them told me it was my fault while others tried to convince me and/or trick me into having said man at a surprise party that I was planning! The behavior from 3-4 “friends” in particular is so disgraceful it completely changed my view of who these people were and to this day I still cannot look at them the same way or think of them without feeling sick to my stomach. The way some humans treat other humans is absolutely despicable and I do not understand how a person is even capable of this sort of behavior.

You are not alone: Do you know how many Canadians this happens to? 1 in 4 women in North America alone will be sexually assaulted in her lifetime. Look around you, how many women are around you? How many women and young girls do you have in your every day life? Think of your mothers, grandmothers, aunts, nieces, sisters, daughters and friends. 1 in 4 of those women and girls have or will be sexually assaulted at some point. 60% of them will have been under the age of 17, and 80% of the assailants will be a friend or family member of the victim.

Rape is rape. It doesn’t matter whether or not you were already involved with the assailant: Instead I was asked by a very important male figure in my life, “Well were you already sleeping with him?”. Even if the assailant and the victim are married, any non-consensual sexual act is assault. Period.

Your assailant is a sad, disgusting, pathetic human being and you will always surpass them because you are a survivor and anyone who feels the need to do that to another person has some serious issues: I thought it was my fault. I thought he had taken my power. I thought he had taken pieces of me that would never re-grow. Looking back on this incident now I actually feel bad for him. How disgusting and pathetic and empty someone must be to feel the need to pin someone down, arm to their throat, and rape them. And for those who followed him, their lives can’t be much better.

People think sexual assault is rare, its not. It is however under-reported and under-prosecuted. That woman you met in the elevator today, the child at the bus stop, the telemarketer who interrupted your dinner, the person delivering your mail, they could all be survivors. Check out these Canadian statistics to understand how common this really is:

  • Of every 100 incidents of sexual assault, only 6 are reported to the police
  • 1 – 2% of “date rape” sexual assaults are reported to the police
  • 1 in 4 North American women will be sexually assaulted during their lifetime
  • 11% of women have physical injury resulting for sexual assault
  • Only 2 – 4% of all sexual assaults reported are false reports
  • 60% of sexual abuse/assault victims are under the age of 17
  • over 80% of sex crime victims are women
  • 80% of sexual assault incidents occur in the home
  • 17% of girls under 16 have experienced some form of incest
  • 83% of disabled women will be sexual assaulted during their lifetime
  • 15% of sexual assault victims are boys under 16
  • half of all sexual offenders are married or in long term relationships
  • 57% of aboriginal women have been sexually abused
  • 1/5th of all sexual assaults involve a weapon of some sort
  • 80% of assailants are friends and family of the victim

If one of your close friends is assaulted, sexually or otherwise, I really do feel that it is your duty as their friend to offer your support, your confidence, and your unwavering love to the survivor because this person will not be able to do it for themselves possibly for a very, very long time. Also, if anyone is reading this who may have made a mistake with how they handled this situation with me, we all screw up. Forgive yourself, on the basis that you learn from this and be better with the next person in your life who’s experiencing something like this, because trust me, there will be more.

And to my own assailant: you didn’t ruin me. You didn’t take away my trust for the human race or male population. I’m still here, spreading love wherever I go. And for you, but mostly for your wife and potential children, I’m sorry that you’re such a pathetic loser that you needed to rape me to feel powerful. You’re not, and never will be, powerful.

 

Loving your body through illness

Well I might be sick with nerves in regards to posting this publicly on the internet, but here I am spending my Friday night the way I spend many friday nights, contemplating pretty much everything only to finally have my epiphany right before bed and then staying up way too late blogging. Only this time using my cell phone as my laptop hurts my eyes too much.

Having a potentially life-threatening illness really puts perspective on body-image. When I was fitness coaching I felt so good about my body even when I wasn’t at my ideal weight because I was working so hard and I was gaining so much strength. I put my heart and soul into it because I could feel both physically and mentally that I was taking control of my life. I was seeing myself in a whole new stronger, sexier way and mostly I just couldn’t believe that I had visible arm muscles, haha! I felt the best I’d ever felt in my life and I associated it all with the ability to exercise.

That’s what makes exercise the biggest loss to me since I got sick. In the beginning when we didn’t know what was wrong with me and before the people in my life began to understand how debilitating Lyme can be, some would try to tell me that exercise would make it better. Some friends still try to get me to “just come to the gym” or encourage me to workout and no one expects that teasing me to exercise more or encouraging it because they think it will help me is actually completely gut-wrenching for me because it is one of the abilities that I ache to get back the most. Not so that I can be a size 2 again, but because I want to feel that strong again. I need the emotional release from exercise again.

A year ago I would have written that I also wanted to love my body again. But the truth is I do love my body now even with the extra weight. I have to be grateful that this is the body that is fighting so hard for me right now. This is the body that is doing everything it can to save me. When you’re sick and losing control you tend to begin to hate your body. Not just the differences in appearance but you also begin to hate it for failing you. The trust between you and your body diminishes. But it’s not my body that has caused this, it’s my body’s natural reaction to the bacteria that are attacking it.

If your truck was falling apart from rust, and you were using water as coolant and regular gasoline in a diesel then you wouldn’t blame the truck for breaking down. My healthy eating definitely kept this disease down longer but I was filling it with stress every day and not repairing past trauma and the Lyme was floating around wreaking havoc and eventually my body broke down. And for that I hated it.

My point is, for all that is against it right now, my body is putting up a good fight so how can I hate it?

I recently have had no appetite. I have gone through periods of lack of appetite, nausea, vomitting, and food aversions mixed in with other periods of being absolutely ravenous on and off throughout treatment. This period of lack of appetite has been particularly strong and long-lasting so I thought I should check if I had lost any weight. I’ll be totally honest, part of me was wondering in hopes that maybe I could have lost some of the weight I’ve gained back and another part of me was wondering in fear, knowing the dangers of losing too much weight with Lyme disease. When I stepped on the scale however is when I realized just how much of my weight I’ve gained back. At the start of my fitness journey I was 186 lbs. My fittest was 148 lbs. My “feeling best” was somewhere in the low 150’s. When I stepped on the scale the other day, I was 190 lbs. I might throw up with nerves and embarrassment about posting that publicly to the Internet, but what I’ve come to understand is that my weight at this point in my health situation could have the potential to become a life or death issue. Never before has my body been so reliant on its own self for nutrients.

Some Lyme patients develop complications of the disease that cause the body to stop absorbing nutrients properly. I’ve read more than one story about this where the patient ends up requiring a feeding tube, but one story that has always stood out for me is of a young lady in BC around the same age as me, who’s body, due to complications of Lyme disease, could only properly absorb nutrients from a certain type of feeding tube food that was not covered under medical and she ended up dying. My body so far has not only continued eating for now, if less lately, but has also stored a good amount of fat that would give me so much more time if it ever came to that. I expect that my appetite will come back 10-fold in a couple of days like it usually does, but that’s the thing with this illness, you just never really know what’s around the corner.

Chronic Lyme does have a way of teaching you things that you never thought you needed to know however, and if there was ever a time for me to appreciate my body for holding a little extra weight, this would most definitely be it. It has been and continues to be an interesting and important lesson on body image and I am learning to love my body, with the extra weight, for all that it does for me.

For more information on my past fitness and mental health journey visit my old blog at www.strengthenbodynotexcuses.com

An Open Letter to my Support Group

It’s a gorgeous Saturday afternoon, probably one of our few left for the year. I should be out with whatever friends I have left, enjoying this beautiful day and instead I’m laying in a detox bath attempting to ease my aching body. Although I do try to keep my blog very authentic and truthful and real, exposing the behind-the-scenes of Late-Stage Chronic Neurological Lyme Disease and chronic illness in general, I typically don’t share when I’m feeling this vulnerable. Even my closest friends won’t usually know when I’m suffering this badly, only maybe my mom and my support group or good Lyme-friends who are all living it too. Today however, as I was writing to my support group I thought, this is something people need to understand. So here it is, in all it’s unedited vulnerability, my open letter to my support group…

 

Feeling the lowest I have in quite a while today. I’ve been treating for over a year, sick for almost 3 years but only really unwell for 2. Which I know is quite a bit shorter time than many of you.. today I’ve basically been in bed since Wednesday afternoon besides doctors appts and picking up prescriptions. I’ve had to take the most time off work in the last week and a half than I ever have before. I only had to move 5 clients but to me that feels like the end of the world. Thankfully most of my clients are so wonderful and understanding and kind, I’m so grateful for that.

Usually when I write I get fired up and excited, but today while writing I just feel sad and numb. I’m only 26 and I couldn’t go hiking once this year. Last night I really wanted to go for a walk and see a few friends at a little event and I required a cane to do it, it was less than a 10 minute walk away. I’ve never let any of these people see me with a cane as I’ve always kept my invisible illness invisible for them. But I really wanted to be able to say that I went and showed my face, so I did.

When I got there I could hear the whispers which I would not have thought were about me if it weren’t for all of the looks that accompanied them. They’re all lovely people so I can only assume that they were whispers of curiosity and concern rather than judgement but I’m not sure that that makes it any more comfortable – at least if they were mean I could be angry and tell them off, lol, but instead it just feels uncomfortable and sad. People who used to look at me with such respect and equality, now don’t even know how to approach me and I don’t know how to approach them.

As I was standing watching this, the happy-go-lucky, friendly guy beside me asks me, “what’s new and exciting?!”
I thought to myself, “I can’t possibly respond with the only new thing in my life is that im about to start a new treatment that absolutely terrifies me, so what the heck am I going to say?!” So I just brush it off and say, “oh nothing,” looking away continuing to watch the ladies whisper. He pushes further, “come on! There must be something new and exciting!” I don’t know why I didn’t think to just change the topic at this time but my brain wasn’t exactly on 100% and I responded with the only thing that was on my mind, “I start IV treatment in 2 weeks,” well what did I think an average, healthy guy would have to say to that? But in all honesty I still wasn’t expecting his response, something along the lines of, “come on you’ve just got to be positive!” And some other words that I zoned out, basically along the lines of I wasn’t acting positive and happy enough for him and suggested that next time I see him I respond with something like “I’ve been skydiving and mountain climbing!”.
“I’m sorry I usually am positive, just give me a break today.” I said defeatedly. And that’s when I realized just how exhausted I was. I go to work 4 days a week with a smile on my face even when every joint in my body is firing with pain. I run to the bathroom in between clients to vomit and then I wash my face, grab some gum and water and continue cutting hair until my shift is over. But last night I couldn’t even look excited for one conversation. I may complain to my mom or a close friend or a Lyme-friend or turn to my blog but overall I do my best to stay positive and, I think anyways, that in the grand scheme of things I do an okay job of it.

Today I’m so tired, and in so much pain, nauseous, sick of spending my days laying on the couch, lonely, bored, and so irritated that someone would talk to me that way and question my attitude. I’m also possibly herxing because those always seem to make me suddenly depressed out of nowhere. As I poured my detox bath and started typing this I just sat on the edge of the tub and sobbed. Only for a moment, but in that moment I felt completely broken and helpless.

P.s. last night I also thought, “omg there actually are people out there stupid enough to say these things. This is literally what people write about that I always think there is no one dumb enough to say things like that to someone.”
But the truth is, he didn’t mean any harm at all and I’m sure if he knew it upset me he wouldn’t like that, but people just don’t know what to say to me anymore.

Still Broken

•Sometimes I forget that I’m still broken.•

Or should I say remember; because really it’s more often I think that I’m whole than not. Or maybe what it really is, is that I forget that it’s OK to be broken.

I’ve over come so much for so young, I wonder if sometimes I believe that I shouldn’t ever struggle anymore because I am so much happier than I used to be. Did I believe that once I became a genuinely happy person I would never struggle again? That none of my past trauma would ever rear it’s ugly head or that no new trauma or heart break would ever occur? Or that when it did I’d suddenly be invincible to life’s challenges?

I don’t know if it’s the smoke in the air right now, or a neurological Lyme herxheimer reaction, hormones, the inability to exercise, or mourning the loss of a really good friend who is still with us, however, is just not the person I needed him to be. I thought that maybe if I could get from him what I could never get from my dad, then maybe I’d be good enough (typical right?!). Whatever it is that’s causing it, I am learning that I am not immune to sadness.

I believe my heart has been broken so many times that it will forever stay open – and I love that! Without heartbreak there is no love, and that’s all that should ever be – love.

For as long as I can remember I’ve longed for a family that fit into my box. My version of what I view a family should be – a group of people, blood or otherwise, who love each other, check in on eachother, hang out together, eat meals together, enjoy eachothers company and genuinely look out for one another. I have longed for this and searched every corner of my life to find it, and maybe I still will someday. Maybe I already have it and don’t even know it. Maybe I have more to let go of in order to create space for it. I’ve held on so tightly to so many nouns that just anchored me. I have pulled around the weight of years of grief for so long now, but link by link that anchor is being left behind; soon I will be weightless. Soon, I will fly.

As you walk through your life, may you all take each step forward with love and an open heart.

An open apology to my elementary school bully.

I don’t know why I thought of you today, but sometimes at random you pop into my head. When this happens I don’t think of you with anger or fear or hate, I think of you with sympathy and with sadness. Sadness not for me, not for the several other people I witnessed you bully throughout our elementary and highschool years, but sadness for you.

It was grade 3 when we first were placed in the same class, out in the portables of our little elementary school, and that’s when I remember the bullying beginning. Three years in a row the school placed us together. I remember dreading it and questioning why anyone would force me to endure yet another year of your taunting, negative presence. Then, at the tender, young year of grade 5, I remember the school threatening to expel you if the bullying didn’t stop, and I don’t think I was ever placed in your class again until highschool.

First I want to thank you, because although I understand and respect that this is not everybody’s case with their school bully, your behaviour helped me learn how to stand up for myself – and by highschool I revelled in it. I would witness you bullying others and would jump at the opportunity to stand up for them. As far as I was concerned, you were simply a mean person and I had no patience for it. Even the teachers would conveniently turn away as I called you out in the middle of class, in front of everybody, for bullying another student, then they would catch my eye and smile, or wink.

Years later, teachers would ask my mom if I ever ran into you anymore, happy, when they heard that I did, and that I was still standing up to you.

What I wonder now as an adult so many years later is, who taught you to be a bully in the first place? While you were being punished at school and probably at home for your behaviour, was anybody kind to you? Did anybody ask you, not why, but what needs you had that were not being filled? When your mother apologised to me for your actions, did she take the time to learn what was happening in your young mind and body to cause you to be that way towards other students?

At your young age of grade 3, did anybody in your life create a safe space for you? Space for you to heal whatever you were battling in your little body that caused you to act the way you did?

Based on my interactions with you before I left DSS 7 years later in grade 10, I suspect that no one did, and for this, I am sorry.

I am sorry that I never saw it from the other side. I never slowed down and offered you kindness. I never offered you understanding, I never offered you love.

My wish for you now, as an adult, is that you will create space for healing for yourself – maybe you already have. That you will create space in your life to accept love, and to give love to others. That you will not let the cycle continue through to your children – that you will offer them whatever your young soul was needing but didn’t know how to ask for.

Rock Bottom

We all have some sort of vice that we shouldn’t use when we’re at our lowest, cigarettes, alcohol, pills, self-harm, shopping, eating, projecting, you name it, we all have something. For years in highschool mine was self-harm. It was like an addiction, the self-inflicted pain that I was in control of, temporarily lessened the emotional pain that I didn’t know how to control. Although I stopped doing that years ago, it is still one of the first things that comes to my mind every time I’m in that distressing, not sure where to turn to, unable to cope kind of pain. Since I refuse to give in to these self-harming urges, the pain has to be released somewhere.

When I was heading into my 11th year of school, my ex-boyfriend passed away. This was one of those times where I couldn’t figure out how to let out my emotions and all of the pain that consumed me every day. Eventually, I started to learn that it came out when I drank. The screaming, the sobbing, the vomiting. It didn’t take too long for me to recognise that alcohol and me in pain did not mix well and I stopped drinking.

Then when I was 19 I was raped, and the cycle happened again, and again I recognised the pattern and got it under control.

It’s been years since anything like that has happened, but lately I’ve been feeling that way again. The over-whelming pain and grief and loss of my life. The daily physical pain as well as all of my other Lyme symptoms and simply learning to live with Lyme disease has put me over the edge recently. My new counsellor suggested that maybe the only time I feel safe to express my emotions is when I’m drunk. That for some people they don’t have to feel guilty for what they do or say when they’re drinking. I would be the opposite of that. Even if I don’t remember what I did or said, I feel an over-whelming sense of guilt anyways, which only adds to all of the pain I’m already trying to process. I feel like I’ve been crying out for help for so long now, and the support that I needed never came. Last week I was feeling so self-destructive. I don’t know why that’s the place that I naturally arrive to when I can’t cope with the world inside of me, but I’ve battled that for years.

I’m not a big drinker, in fact most people when they find out I’ve gone out and had a few too many on those rare occasions, congratulate me and tell me its good for me to let loose sometimes. I’m your typical glass of red wine with dinner maybe a couple, and usually can handle my alcohol fairly well, that is, until I’m in that mode of overwhelming emotional pain and self-destruction. Not to mention Lyme disease and all of the meds that come along with it seem to have changed the way alcohol responds in my body as well.

I feel like I’ve been crying out for help for so long now, and no one listened. I’ve even flat out said to my friends, family or boyfriend, “I need more help,” “I’m feeling really self-destructive,” “I need to do some things to make myself feel better,” “I can’t keep doing everything I’m trying to do by myself,” I also wrote this blog post the afternoon before I self-destructed. Each time I said one of these things I got a small acknowledgement that I said it, but then nothing. Now I’m certainly not trying to blame other people for my actions – I am the only one who can control what I do and I realise that. I just really, really needed some extra support, and if those weren’t clear ways of asking for it, then I don’t know what is.

So we went out to the pub, and I drank too much. And like any self-destructing 26 year old, I wanted to keep going even when I normally would have stopped after 2-3 drinks, so we did. And we had a blast, but at the end of the night, the only one sobbing and vomiting, was me. And I blacked out.

The next day was rock bottom for me. Not only was I severely hungover, Lyme symptoms flared, struggling to remember how ugly the night before really got, I had to admit to myself why this had happened. No one forced me to go out. No one forced alcohol down my throat. I did this. And since I know from my history that I only do this during certain moods, I had to really face the reality that I am not okay. And have not been okay for a very long time.

The truth is, I don’t want to live. Not like this anyways. And after picturing what kind of letters I would leave behind and who would take my dog, I had to admit that to myself, and finally admitted it to my mom, and got an emergency counselling session right away, with a second one booked for only 4 days later. I should have asked for counselling sooner, but I was in denial. I wish someone else had recognised it sooner too, but no one is to blame for that.

This is my rock-bottom. And the thing about rock-bottom is that you can only go up from there. I have my counsellor in place, and now that my mom is aware of what is going on she can better support me as well. All of my old coping mechanisms no longer work with Lyme disease, which I’m sure contributed to me being here now, but with my new counsellor I will be working on creating new ones and getting back to my healthy happy self, even if that looks different now than what it used to. I’m working on mending relationships and finding forgiveness, but most of all, I’m working on mending my relationship with myself, and forgiving myself.

If you or anyone you know is struggling with any kind of chronic illness or mental health issue, listen carefully to their words, chances are they’re asking for help in ways that maybe you don’t recognise. If you are struggling, please call a counsellor. I used Alongside You and they were fantastic but you can also find a list of counsellors in British Columbia here.

**This turned out to have a major Lyme herx reaction contributing to my mood as well

Child and Youth Mental Health and Substance Use Congress, from a youth.

Reflecting in my hotel room for a little bit after a lovely native healing amythest biomat session with a beautiful native healer, while we break before dinner here at the Child and Youth Mental Health and Substance Use Congress. It’s been a long day of learning, and I may have taken a couple of opportunities to stir the pot a little bit – that is afterall why I sit on the South Delta Mental Health Local Action team isn’t it…
I am filled with gratitude that I’ve learned of some system changes and progress today that tell me that our mental health systems in BC are better than they were when I scrambled through them as a youth. I am humbled to hear that there are now some systems in place to assist in the sharing of information between a youth’s mental health team, so that different care groups can begin to work together, rather than apart, for the benefit of a child’s mental health.
One question that was raised was if the file is being shared between the professional team members working together for this child, is the file also then shared with the family for their own support and understanding. This is not the case due to the issues around is the file belonging to the parent or to the youth. If the youth is over 16 and does not want the file to go to said parents, is that the child’s right or the parent’s right? The presenter went on to argue that although the file is not given to the youth or parent, they do own it and can go through the freedom of information act to recieve it.
Although I wish there was a simpler solution to this barrier, I do understand it. So MY question was, Is anybody informing the youth or parent that they have the right to request said file for their own personal use? The answer of course, was no. I only learned recently that I had a right to my medical files, most youth and parents that I have spoken to are not aware that this is within their rights or an appropriate action to take, if desired.

So although I am humbled and grateful for the progress that has been made, today left me with the following main questions:
– Why, are parents and youth, not informed that it is within their rights to request the child’s medical file when dealing with mental health crisis?
– Who and how, do we hold doctors, psychiatrists, care workers, etc, accountable when a situation is not handled professionally or with care, or when their reports do not accurately describe the patient, or when they drop the ball over and over again leaving a mentally ill youth without care or support, or when they don’t understand the illness so they unnecessarily blame physical ailments and disease on mental illness? Or to be frank, when they are flat out ignorant and narcissistic? Lets be honest, that happens.
– Why are doctors not being taught to PROPERLY explore other physical health issues such as nutrient deficiencies, lifestyle choices, or infectious disease such as PANDAS, Lyme, etc, before jumping to anxiety, depression, bipolar, panic disorder, schizophrenia, psychosis, autism, ADD, ADHD, and other mental health disorders?
– Why when a parent or youth tries to advocate for themselves or their child, wanting to explore options such as infectious disease, are they sent by their doctor for a psych eval instead?

While at this conference I helped a person with a history of serious mental illness, drug abuse and homelessness, who is now an incredible advocate, learn that he/she has lyme disease. I got said person in contact with a doctor who has confirmed this. This individual’s tick bite happened as a child before any of their mental illnesses began. When the bite happened a bullseye rash appeared, the doctors ran tests and told the family that the child was fine. What they did not tell the family is that not everyone with Lyme disease gets the bullseye rash, but everyone with the bullseye rash gets Lyme. Years later this individual has overcome severe mental illness, drug abuse and homelessness as results of said mental illness, along with severe joint issues, rheumatoid arthritis, surgeries for said joints, pain issues and more… Could any of this of been prevented if our doctors were better educated on the subject?

I have no idea when I was bit. I don’t know if I got it from a tick or from a mosquito as west nile was also found in my blood. I know for sure that I’ve been sick for 2 years, but I show some physical signs of Lyme disease going back to before any of my mental health issues began. Is this a coincidence? Or could my story of also been drastically changed if doctors would look for these things before jumping to mental health? I do know for a fact that my story would have been changed if they’d thought to check my iron and thyroid levels…

I am so grateful that we have come this far, that people from different groups have begun working together for a better system and better child and youth mental health, but at the same time my heart aches for how far we still have to go…

An open letter to anyone who loves someone with a chronic illness.

It seems these days that everyone knows someone battling an invisible illness, whether it be mental health, chronic fatigue, lupus, cancer, PANDAS, any of the hundreds of illnesses that exist today or in my case, chronic lyme disease and coinfections.

I am so incredibly blessed to have some wonderfully supportive people in my life and that I have not had to fight as much of the stigma or discrimination that many people with chronic lyme disease have, but even the closest, most supportive people, still need some reminders once in a while that we often don’t have the strength or courage to tell them in the moment.

Although I cannot speak for anybody else, please consider some of the following next time you’re dealing with someone with chronic illness, or with a stranger, as you never know what that person may be battling beneath their skin even when they look totally healthy on the outside, as I do.

Please remember, that most of us lived vast and fulfilling lives before we fell ill. We had lots of friends and a healthy social life. Myself, I worked 3 jobs, 2 of my own businesses, felt quite successful for my age, was a bit of a work-a-holic, and felt as if the possibilities for my future were endless. I worked out 6-7 days a week, meal prepped every Sunday for a healthy week ahead, and enjoyed anything outdoors and active with my friends. I played sports and dated and hosted and attended dinners and social gatherings. I sat on the board of the business association in my town and was their youngest member, was highly involved and loved every bit of giving back to my community. Having all or most of this ripped away from me was not something that I asked for, deserved or could even have imagined. It is a grief and a loss of control that my words cannot describe.

Please remember that we want with every ounce of our beings to be average again. We want to be able to exercise and travel and cook and clean and go to the grocery store without having to consider the physical and mental consequences of doing so. We want to be able to do the dishes, walk the dog, or vaccuum without having to consider whether or not that will lay us in bed for days, or make us unable to complete other tasks that are necessary to the day or to our health. We want to be able to find a simple recipe, go to the grocery store, come home, make said recipe, clean up from said recipe, and still have the energy to eat what we’ve made. And to be honest, most days I’d be happy with half of that.

Please remember that our being ill isn’t about you. And it hurts us more than it could ever hurt you. I cannot imagine how difficult it must be to watch someone you love fight chronic lyme. It must feel gut-wrenching and helpless, but unless you are the immediate care-taker, in the end you still get to live your life. Instead of getting caught up in the pain, do what you can to support them and help them get through the day. Check in, help them dole out their meds, offer them rides, help clean their house, bring them food, pick up their prescriptions, offer to take them to the grocery store or bring them groceries. Chances are they are not comfortable asking for what they need, you will need to offer it. If they do gain the courage to ask for help in any way, please do not make them feel guilty or silly for this! Trust me, the guilt and embarrassment of having to ask for help is way worse than doing the task ourselves if we could manage it. Possibly the biggest relief I’ve ever experienced is when I ask someone for help and they are just happy to do it, or even when they notice that I need help and do it without me having to ask. The weight and guilt that is lifted from my shoulders in that moment is more than I could ever ask for.

Please remember that we carry around an abundance of guilt. Guilt for what we cannot do, for what others do for us that we cannot return, for not being our best selves. If we make plans and have to cancel due to symptoms or doctors appointments, we feel guilty. If we need to ask for a favour because we are unable to do something ourselves, we feel guilty. If we cannot do something due to financial strain from being unable to work or the cost of doctors and treatments, we feel guilty and embarrassed. If you ask us to do you a favour and we are unable to, we are overwhelmed with guilt. Please remember that if we could do something for you, most of us would be so incredibly happy to do so. Especially to assist someone who does so much for us. If we say that we aren’t able to, please remember this and approach the situation with love and understanding. Know that we are not saying no out of laziness or a lack of will to help, it actually feels like a knife to the heart to have to say no and when you don’t understand this or continue to push it only jabs this knife deeper and amplifies the guilt that we’ve already bestowed upon ourselves.

Please remember that we have most likely become experts in our own bodies and illnesses. Chances are we have a team of doctors that we have fought to receive, less-so in cases of chronic lyme, however in BC we are extremely lucky to have a couple of amazing ND’s with prescribing rights helping us. You can find a lot of information online, and please research so that you can understand and assist your unwell loved ones, even take them to their appointments, however, please do not take on the role of the doctor unless you have been asked. I personally don’t mind when people send me information that they come across on lyme, I even appreciate knowing that someone was researching or thinking of me and wants to help, but not everybody feels this way, and chances are we’ve already read it, heard it, or tried it. Also, with something as complex and denied as chronic lyme there is a lot of false information out there. There are also a lot of people and businesses who will try to take advantage of the helplessness and despair of someone who is suffering with lyme disease, struggling to get help from their medical system. Please, share good information but do not push your own values or opinions onto them. It is difficult enough for us to filter through all of the information and treatment ideas to figure out what is helpful and what is a scam, as well as what will actually work for us as individuals as what works for one person, often does not work for the next. I am only in the beginning of my treatment and I have had times where I am on close to 200 pills per week. Some prescription and some herbal. Some antibiotic, some antiviral and some to support my immune system, gut, or manage symptoms. At a time of being on almost 200 per week, I had someone tell me that I wasn’t on enough supplements. He was shocked really, that I wasn’t taking more herbals. I’ve had others try to say that maybe my issues are caused by all the meds or that I shouldn’t be on antibiotics for so long. Please remember to keep your opinions to yourself or at least don’t push it! You may be doing so out of love, but healing and treatment are be very trying and overwhelming on a person, please don’t try to force your own opinions and beliefs onto us, or make us defend or validate our choices. Personally, I have a very skilled and capable ND who adjusts my treatment monthly, sometimes more, in order to make sure my body is getting what it needs. Recovery from chronic lyme and coinfections is not black and white, or a straight path, or a short road. Average length of time is 9 months to 3 years, which include a lot of trial and error, and a lot of patience, strength, and faith.

Please remember that when we say we’re okay, typically what that really means is we don’t feel like we’re in immediate risk of dying, our pain levels are maybe a 7 instead of a 10, and we want to spare you the details and ourselves the risk of looking attention-seeking or from being the person who is avoided at the supermarket. My version of ‘I’m okay’, is now significantly different than it was when I was healthy, but, like many people with chronic illnesses, I fear that if I’m honest every time someone asks me how I am, I will be taken for a hypochondriac, or as someone with a bad attitude. I don’t want to be the girl that people avoid making eye contact with because all she does is complain, and honestly, sometimes I just don’t want the sympathy or judgement that comes with telling the truth about how I am each day. This doesn’t mean that you should stop asking, please, if you care, continue, but just accept that when I say “I’m okay thanks, how are you?” it probably really means that I just don’t want to get into it all, please distract me with your own life and stories.

Please remember that social media, blogs, and the internet, is all a lot of us have. Many of us are bedridden, house-bound, or almost house-bound. Most of us are not working, and if we are, cannot do much else on top of that and what we can do needs to be reserved for the necessities like eating and cleaning. So maybe we share too much online, or spend too much time on social media, but for some of us it is all we have. We are still human. We still hold the desire to connect and communicate with other human beings. Many of us will also form deep connections with others in similar situations, that can only be formed online. These platforms also offer you a way to support your loved ones with illnesses without having to run any errands or travel. Read their blogs, like their posts, and send messages of support. Show them that you’re there, and even though you’re not in person or racing to pick up their prescription for them, you’re still thinking of them. Do this only if its true, do not bother if it’s fake. If you think they post too much or feel like its too depressing, save them the burden of your own feelings and unfollow them, they never need to know. But remind yourself that for many of them, this is their only way to connect. To reach out, to vent, to laugh, to cry, to share, and that the messages of support, love and strength from loved ones, acquaintances, and even strangers, really do mean the world to them. If you think they’re strong, tell them. If you can relate to their life or their pain or their happiness or their frustration, tell them. If you learned something from something they wrote or shared, for goodness sakes tell them!

Please remember that most of us are very aware that our lives could be cut short. Although I no longer feel that I could die within the next year like I did before finding a good doctor and starting treatment, I often wonder what people would say at my funeral. And I can’t possibly be alone in that. So this one goes for everybody, not only the people in your life with chronic illness, tell them how you feel about them. Tell them when they’ve made you happy, when they’ve made you sad. Tell them when you’ve been inspired by them or found hope or relation through them. Tell them when you think they’re strong. Tell them when they are loved. Don’t make them wonder and possibly never know.

Please remember that this is just the way it is. I don’t sit around feeling sorry for myself (usually!), and I don’t think most others with chronic illness do either. We don’t want you feeling sorry for us either. You may think that when we make posts about our lives or situations that we are complaining or sad, or you may feel sad for us. Please remember that this is just our lives. You post things about your kids or job or vacation or commute, that is your life. Just because our posts may be more about health, illness, doctors appointments, diet changes, or detoxing routines doesn’t make us sad, attention-seeking or worthy of your pity. We are sharing pieces of our lives, just like you, and we still find joy in our lives, even if it looks different than yours.

Why your sick friends don’t “just call”.

Whenever I run into friends and they ask me about lyme and how I’m doing with it all, they will say “well just call me!” or “why haven’t you called me?”, “I’ll get you out of the house, I’ll come visit!”.

We don’t call you because on our bad days we can’t even fathom holding a conversation. Some people with late stage lyme disease can’t even remember how to dial the phone, let alone call you themselves. I am a lucky one who can still do daily tasks and dial a phone, but on my bad days I’m much too sick to try to hold a conversation.

We don’t call you because it’s really hard to make plans when we don’t know how we’ll feel next week, or tomorrow, or 3 hours from now and we don’t want to let you down. Also, if I can barely walk, or am struggling to hold a conversation, I don’t want to be seen that vulnerable.

We don’t call you because we don’t know what to say. Our days are spent sleeping, working if we’re lucky, or with doctors, medication schedules, treatments, rest periods, and symptom management. We know that just because our lives have had to slow down doesn’t mean yours has. We don’t want to bog you down or scare you off with our current state, and when you ask us how we are, we’re tired of pretending we’re okay.

We don’t call you because when we do have the energy to talk, we’re thinking about how to get the week’s worth of dishes and laundry and house work done that has piled up over all of the days we were unwell. We know we need to do it because we don’t know when we’ll be physically well enough to do it again. We’re making soup for the week because we know there will be days we can barely eat, let alone cook, and if we don’t do it now we might not get the chance. We’re preparing, because we know our good days are limited and important, and we don’t know when we’ll feel well enough to go to the grocery store again.

We don’t call because we don’t want to burden you. We’re happy that you’re happy and healthy, but sometimes it hurts too much to see life moving forward for everyone else when we’re drowning in darkness.

Just because we don’t call you doesn’t mean we don’t need you. We need you to check in sometimes, to make plans, knowing that we may have to cancel at the last minute even though we hope with everything we have that we don’t. We need you to come by, and when you do, our houses will be messy, and we will be embarrassed. We will not be near the host or hostess that we’d like to be, and we will feel guilty for that. We need you to come by anyways, with no expectations.

I have one friend who still visits regularly, and a couple others who check in or send food. My good days are still worse than my old bad days, but they’re good nonetheless and they seem to be coming more regularly in the last few days. I know I can’t expect those to last, as this disease is very up and down, but when they do come I hold on tight and enjoy and appreciate them. It’s on those days that I can write, go to dinner, maybe risk a short walk. Catch up on my cleaning and cooking. Sometimes I can even read a book, or go to the grocery store without the fear of collapsing. But if I am on a roll and do too much I pay for it the next several days. On the weekend I slept all day, walked two blocks into town for dinner and a drink, and slept all the next day to pay for it. But it was worth it to have one evening that felt normal. To be able to walk that few blocks into town and have dinner in a noisy restaurant was something to be celebrated.

I long for the days when I could be up at 6am, working out, meal prepping, working 3 jobs, sitting on different volunteer committees. I long for the days when I was ABLE. When I didn’t have to think about whether or not I could handle going to the grocery store that day, when I didn’t have to schedule a lot of rest time so that I’m able to work one job. When I didn’t have to consider whether the noise at a party or a restaurant would cause my central nervous system to flare up, possibly sending me to the ER. I long for the days when I could walk my dog.

At the same time I’m still so grateful. I am grateful for the days, like today, when my head is clear and I can write. I am grateful that I am not bedridden. That I can still work. That my grandma walks my dog for me. That I’ve met so many incredible people who are all living with lyme disease and helping me to navigate this journey. That I have family nearby to help me and support me. That I have a couple of friends who care enough to check in or bring food. That I have one friend who spends countless hours with me in our sweatpants watching netflix when its all I can do, and who forces me out of the house when I’m able, even if its just for a drive. Who walks around the mall with me when I feel like I’m walking so fast but really am walking worse than a 90 year old arthritic woman. Who holds my hand while I sob in the moments or days that I can’t take it anymore.

I know that I have a long road ahead of me. But I’ve had a few clearer days recently and it makes me feel like I’m starting to see the light. I know that its too soon to say that and that I can’t count on it to last, because worse days may come before the good, but I know that I am in good hands and will one day get healthy again. A year sounds like a long time, and many people have to have several years of treatment before they’re better, but I spent the last year only getting sicker and sicker with no answers or end in sight. At least now we know some of what we’re fighting. We know the road may take some turns but we’re on the right path. And whether they last or not, I am going to hold on tight to these good days and appreciate them for everything they’re worth.

How to get medical help with the red-flag of mental illness in your file

It’s no secret that I have become friends with my mental illnesses. I have denied them, hid them, fought them, accepted them, lived with them, shared them and embraced them. I have learned the things that I need to do in order for them to be my friend rather than my enemy. We now work together to allow me to live a happy, thriving life, and I use them to help so many other people in the process. They are a part of me just like any other part of me. I am comfortable with them and stronger than them; wiser than them, and they rarely try to fight me anymore.

Which is why I find the way that I am treated in the emergency room so offensive.

Someone warned me recently that if the ER sends me for a psychiatric evaluation it will put a big red flag in my chart. I told her, “Don’t worry. That big red flag has been in my chart for as long as I can remember. I’m used to it.”

On August 6th I collapsed in my home where I live alone. Thankfully I didn’t loose consciousness and was able to protect my head from slamming into the hard tile floor. My parents were out of town so I called my 77 year old grandma, sobbing. She rushed to my home only a few blocks from hers, and luckily she has a key. She put me over her back and practically carried me to the car where she took me to Delta Hospital Emergency.

I’m sure its no surprise to anyone that its not easy for a 77 year old woman to carry most of the weight of a 25 year old, so when we arrived she made me wait at the car while she got me a wheel chair, scared that I might collapse again and bring her down with me. This seems to be a common symptom for me these days – my knees or ankles giving out – usually I am able to catch myself with my other leg or grab onto something for support but once in a while I can’t, or both legs go out at the same time.

She wheeled me into the ER, got me checked in, sat with me a bit, and then left to get a newspaper. Of course the moment she left was the moment that the nurse began calling my name to take me in from the waiting room.

“Denise Askin… Denise Askin!?” the nurse kept calling as I waved my arms from the wheelchair.

“I’m over here,” I kept responding.

“DENISE ASKIN!!!” she shouts.

“I’m in a wheelchair,” I call back while flailing my arms in hopes she will come to help me.

When she finally approaches me she looks at me with disgust and without trying to hide the disgust or annoyance in her voice she asks me, “Well can you walk?!”

“Uh, umm, uh,” I stutter, “well, umm, I’m here because I collapsed.”

“Well did you walk to the car to get here?” she practically spits at me.

“Uhhh with a lot of help,” I whisper in shock.

“Well come on then!”

I think shes going to help me up, maybe take my arm to steady me. Instead she turns and walks toward the doors, me shuffling unsteadily behind her. As she approaches the doors, me struggling 10 steps behind,  she turns to tell me to hurry up.

Embarrassed, degraded, angry and sad, I sit in the line of chairs where you wait to be seen by a doctor. Over 3 hours go by without a doctor or a nurse even speaking to me. This is fine, I understand I was not high priority, I was managing my pain and sitting quietly with my grandma. I wasn’t gushing blood or on my death bed. I understood this and continued to wait patiently, grateful for my cell phone distraction and the company of my grandma.

Eventually I decided to try to walk and get a cup of water. I shuffle to the nurses station and begin to ask a nurse where the water station was. “Are you Denise Askin?” she asks.

“Yes.”

“Here, I have your ativan for you.”

I look in her little paper cup and see a large, white ativan that she seems to think I need to take. I recognise it with fear, as I’ve only ever taken that large of dose once before at the dentist and it made me so high that I had to phone back the next day to make sure I paid my bill.

“I didn’t ask for ativan,” I tell her, confused.

“The doctor wants you to take it. Just put it under your tongue,” she responds matter-of-factly.

At this point I’m very confused as to why this is being given to me, and I ask her why the doctor wants me to take it and how I can possibly be prescribed ativan without any doctor or nurse even speaking to me first. Is that even legal? I don’t think it could possibly be ethical. Then another nurse comes up behind me, “Denise? We’re ready to run some tests on you,” then to the first nurse, “did you give her her ativan?”.

“She’s refusing to take it.” the nurse replies.

Great. Now I’m crazy and defiant.

The second nurse encourages me to take the pill and still cannot tell me why or how I’ve been prescribed it in the first place. “Do I look like I’m having a panic attack to you?” I finally ask.

“Well, no…” she responds.

“Great. Then if I start to have a panic attack I’ll take it. But for now I am not anxious and I’d like to be able to explain to the doctor what’s wrong before being drugged.”

And guess what – I never did have a panic attack or get anxious during this visit, and my blood tests showed that my eosinophil levels were abnormally high. This is the white blood cell that fights infection. Imagine that. Someone with a history of mental illness coming to the hospital for something besides mental illness. Crazy right? Unfortunately, when you have that big red flag in your file, it is generally assumed that every time you walk into the hospital or doctors office, there is nothing wrong in your body and everything wrong in your head. You will never be treated with the same dignity and respect as someone who does not have that big red flag. Anyone with that big red flag will always have to fight harder for the same care and respect that someone without it receives. This is not just my opinion, ask anybody else who has it and I’m sure they’ll tell you the same – I know I’ve asked many people with history of mental illness and they’ve all said the same to me.

 

Tuesday I started to feel confused. Then I lost my ability to speak. I could see the words right there in the front of my mind, but I could not for the life of me figure out how to get those words from my brain to my mouth. And then I got a sharp shooting pain through the left side of my head and my legs went out from underneath me. Suddenly I was on the floor.

On our way to the emergency room I wrote on a napkin to my mom, “Do not mention Lyme”. Because my mom has sat in on Lyme support group meetings with me and also is in my online support group, she has seen everybody else’s warnings to not mention Lyme disease in Canada to an MD or in an emergency room because all they will do is send you for a psychiatric evaluation. Unfortunately my dad was not aware of this, and when the nurse was in asking questions he did what anyone unknowingly would have done, and said, “but I thought it was Lyme disease?”. And that was that. The nurse went on to explain that Lyme disease does not exist here, and I wrote down on a piece of paper (still unable to verbalise), “Canada does not recognise chronic or late stage Lyme.” The nurse read this and went on to tell us that the US doesn’t recognise it either. I know is not true because that is where my blood gets sent to and I have met several people through support groups who go to the states for their treatment. However, I still couldn’t speak and I didn’t have the energy to try to argue it so I let her continue to tell me that they would do their best to help with the immediate situation but would not be getting to the core of what’s deteriorating my body and brain.

After about 4 frustrating hours of trying to be able to get the words from my brain to come out of my mouth, my pain started to flare up. It started in my left knee, then trailed down my leg and into my foot, spreading through each of my joints and into my eyes. Then all of a sudden my head, neck, eyes, and ear pain shot through the roof. I went from calmly laying in the hospital bed to sobbing and kicking because the pain was so intense. I’m unsure of how long this went on for before suddenly I felt something in my head clear and I said “I think I can speak again,” and just like that the words didn’t get trapped in the front of my brain anymore and instead flowed freely out of my mouth like I had expected them to all along. So now my inability to verbalise was gone, replaced with unbearable pain.

The next bit is a blur and I’m really unsure of how much time passed but they hooked me up to an IV and filled me with fluid and pain killers. I’m not sure how long I slept for, it may have only been 20 minutes, but it was the best rest I’ve had in a significantly long time. It wasn’t until I had the relief from the IV pain killers that I realised just how much pain I’ve been living with for so long. I think after a while it just becomes the norm and maybe we aren’t always aware of just how much pain our bodies are trying to function with until its gone.

Sometime during my rest the resident who had been tending to me came in with a doctor who I hadn’t seen before. This doctor then told me that there was nothing wrong with me physically, and to please wait for a call for a psychiatric evaluation. He then went on to explain that Lyme disease doesn’t exist here, and that even if it did, he has worked in Lyme-endemic areas before and that the main symptoms are joint pain and a rash, and that it wouldn’t present itself in this way. Well, that’s funny, because I have an online support group of 1700 other people in Canada who have the same symptoms as I do as well as an in-person support group that is run by an MD, who also agrees with the rest of us. My mom even posted in the online support group when I went into the hospital to see if anyone else has ever lost the ability to speak or experienced anything that I was experiencing at the time. Many people responded to her thread saying that yes, this is something that has happened to them and that usually the only thing to do is sleep it off. One woman even commented that she lost her ability to speak for 3 months.

“Actually, there is a public health map available online that shows that we live in a Lyme-endemic area here in Ladner, BC,” I told the doctor.

“Yes, well, we have found ticks here with the Lyme bacteria, however you cannot get Lyme disease here.” he responded.

Shocked at the blatant contradiction in his single sentence I gave up and let him go on about how someone would be calling me in the next few days to set up my psych evaluation.

I could skip the evaluation, but that, I’m sure, would only add fuel to their fire and give them more reason to not treat me next time. I have no reason to fear the evaluation either, so therefore I will go – and when I do go, and pass it, what will the doctors do then when they no longer have mental illness as their scape goat? Don’t get me wrong – I understand why they’re sending me there. I have a history of mental illness, the Canadian testing for Lyme is not accurate (they only test for antibodies which many people stop producing after being sick for a long time, please watch a short video here, this video is based in Europe but explains really well what is also happening in Canada and why we can’t get proper treatment and testing here) and they can’t or won’t figure out whats wrong with me. So therefore, they have to pass me off onto someone, and mental illness is the easiest scape goat. I also appreciate and respect the fact that they do need to rule out mental illness, and although my family doctor and I know that this is not due to mental illness, the ER doesn’t necessarily know that and still has to cover their asses, and since Delta Hospital does not have an MRI machine and I’m already waiting for a neurologist appointment that was marked urgent by one of their internists, checking my mental wellness is all that’s left for them to do.

What’s ironic is that 12 hours after leaving the ER I got a phone call to see if I could see a psychiatrist that day! In all of my years battling mental health I don’t think I had ever gotten in to see a mental health professional that fast. I battled long wait lists and can remember phoning and phoning different agency’s with no response and begging to get in to see someone quicker. When I was in the thick of my fight with mental illness I would have given anything to see a psychiatrist that quickly and get on the road to recovery. If that’s what I was battling now I would have dropped everything to be able to get to that appointment on Wednesday. However since its not, I wasn’t willing to miss work for it and will be going next week instead.

Meanwhile, the neurologist referral that was marked urgent and sent to Jim Pattison is what I really need right now. My Internist assured me that I would be getting in very quickly due to its urgent nature, and yet when I phoned to check on the timeline, the staff at Jim Pattison informed me that although it was marked urgent by the referring Internist, the doctors there deemed it routine, and I had been put onto a year long wait-list.

I know that a lot of people feel strongly that our medical system is the best in the world, but I have to respectfully disagree. I fought for years to receive the mental health treatments that I needed, and now that they’re not what I need they’re the only thing the doctors here are willing to give me.