Dazzle4Rare Advocacy and Education

IMG_4985What is dazzle4rare?

Dazzle4Rare is a yearly social media campaign designed to help bring rare disease communities together. According to Global Genes, there are around 7,000 known rare diseases. Groups supporting these rare diseases can be very small which makes reaching a larger audience difficult. But by networking and banding together, groups of all sizes can spread their messages of advocacy, education, and hope to more people.

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How did it dazzle4rare get started?

My Mum died early 2016 and her twin (my Aunt obviously) died a few weeks later. Neither of them left any plans behind for burial or funerals. I came back to the US (from the UK) to help settle their affairs. I wanted to honour them but really was not sure how. They suffered tremendously with their health before they both passed. Their passing was very painful and also felt like a view into my future as we shared many of the same conditions and I wonder if there was not more known because they were also “complex” patients.

Around that same time, I became aware of a young man, very early 20s, with Hashimoto’s encephalopathy (also known as steroid responsive encephalopathy associated with thyroid or SREAT) who had gone missing in Utah. I reached out to his family but shortly after he was found dead in the mountains. This young man had just become a father for the 2nd time a week before and he left behind a very young wife with two very small children. The illness had taken hold of him and as a result, it changed so many of the lives around him.

I spent a lot of time talking to this young man’s sister trying to help raise awareness of HE/SREAT so that his death would not be without for nothing. I spent hours writing to news outlets to generate interest in telling this man’s story. He had only just been diagnosed with HE/SREAT and so little is understood about the condition. It was a tragic loss. I felt so much empathy for the family, having also just lost two loved ones myself (incidentally, this young man and my Mum shared the same birthday, August 12th).

Close in time to this, a young woman named Derya (#FreeDerya) had been put on a mental health ward with seemingly no way out, despite being days from receiving IVIG for autoimmune encephalitis. Her prior medical diagnosis was put aside for a bi-polar diagnosis despite her symptoms being well explained by neurological disease. Her story very much mirrored some aspects of the NY Post writer, Susannah Cahalan. I spent a lot of time speaking to her family via the internet as well trying to reach out to news outlets and spread the story. Eventually, though there was not much media interest, a local government official did become involved and Derya was finally released after I believe about 70 days. I am sure readers can imagine the pain and distress her parents experienced during those long days and nights. It was an absolute blessing when she came home. I recall crying with joy when I heard from her mother.

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The common denominator I saw in the stories of the young man and Derya, who were about the same age, was that there was so little understanding of their suffering and so little interest in the media to share their stories. These events were keeping me awake at night, brainstorming about how to reach more people when the idea for #dazzle4rare came to me; a full week of rare disease communities around the world joining together to exchange their messages, draw strength from each other’s numbers, and reach the people who need to hear their stories the most.

I could not think of a better way to pay homage to these people and the many patients whose stories I wanted to share with a greater audience than #dazzle4rare. The stories of rare disease patients, their families, and the stories of the undiagnosed truly needed telling, as they still do. We have so much to tell the world and yet it’s so very hard to reach people when you are part of 10% of the population spread out around the world. These stories are often relegated to a corner of the nightly news, a small square of news print, or word-of-mouth between neighbours of a friend-of-a-friends who suffered with XYZ disease. I had hoped, and do hope, that we will be able to put human faces to these 3rd party stories passed around with only some passing interest. These folks deserve much more.

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Are you affected by a rare disease or is a loved one?

I am undiagnosed.

That is not to say I have not been diagnosed with anything but more to say I have been diagnosed with various a la cart conditions, then having a diagnosis changed or amended, and so on. I had an experience very similar to Susannah Cahalan at 21 which included myoclonic seizures, changes in my mental status, and finally what seemed like a decent into madness. It was a terrifying and lonely time which took many years to recover from. That experience was almost 17 years ago, well before autoimmune encephalopathies had been discovered. I still persist with a lot of issues but am lucky to make the most of what life has handed me by spending my time working with others. I still struggle but for me, I have accepted now is not the time to focus on me. While I hope genetic testing and fresh evaluations may one day lead me to my own answers, my energy goes into helping those I can help. I don’t believe in “moral desert” but rather doing the best I can and enjoying seeing people’s lives get better rather than waiting to hit some unlikely “health lottery” for myself. I’m very lucky and I’m thankful for that every day.

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Would you like to bring awareness to the rare disease that helped you started dazzle4rare?

I very much would like to do that! There are so many kids struggling with HE/SREAT and yet the treatments can be so hard on if not inaccessible totally because of the detrimental side effects on young people. These kids have a lot of life left to live and I feel we owe it to them to do the hard work now for their future as we as their children, especially if there are genetic components to conditions like HE/SREAT.

As an example, our youngest known patient in the HE/SREAT community was about 3 years old at diagnosis. She came quite close to death. Another family I have spent a lot of time talking with has a daughter who is about 11 now. The mother and I became friends via the Understanding Hashimoto’s Encephalopathy Support Forum and she has kept in contact with me, sending me photos of her daughter and letting me know how they are getting along. Often, I have felt so helpless, only able to provide my emotional support to these mothers, as a mother myself, and I know if we want to see change, we must get more involved in the outcomes for patient communities like the HE/SREAT community. We have reach more people with our messages, we have to get involved in research opportunities, and be proactive.

With that said, I have met through the first #dazzle4rare campaign a lot of folks in many communities. People like April (aka GP Queen in the Gastroparesis community) and Monica Andrade (a part of the CSF leaks community, an uncommonly diagnosed leak of the spinal fluid which causes a myriad of horrible symptoms). These gals have become friends of mine and I am just as invested emotionally in the outcomes for their communities as I am in the HE/SREAT community which I have spent hundreds of hours deeply involved in.

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Please share your journey about dazzle4rare and it can be shared on my BlogSpot to help bring awareness to dazzle4rare.

For me, it started as a way to work through the grief over losing my Mum and Aunt, then became a way to also help honour the young man I mentioned earlier, a way to help raise awareness for young people like Derya, and it has grown substantially for me emotionally. I have met so many wonderful people as a result and I have been blessed with some amazing people who are in my life because of this work. We are lucky, the little group we have, to have each other and share a goal of spreading our messages of education, advocacy, hope, and progress in the rare disease communities. These folks inspire me daily and I hope that their work inspires others. I know it’s an often a helpless and hopeless road, rare disease, but it does not have to be so lonely. There are so many people who struggle in the world with these conditions and there is a wider community in the world that is ready to accept these people and offer support.

Ideally, I think the best way for folks to participate in #dazzle4rare is to join our Facebook event first. From there, I would encourage people to share their own stories of rare disease, advocacy, and education on their social platforms using the #dazzle4rare hashtag. We will reshare as many tagged posts as we can.  I would also ask people to also encourage folks from their communities to participate and tweet, share, like, and otherwise disseminate the approved community messages with others.

If someone would like to add their community to the list, please reach out to us from the Dazzle4Rare Facebook page via message so we can add your community. The more the merrier most certainly. The internet is a big, big place but again, I believe in strength in numbers and if we band together, we can make an educational impact on social platforms and reach more people than we would have ever before in our own groups. Often, we insulate ourselves inside our own support forums and groups and often do not get a chance to reach out to more people. This is the time to for all of us to make the rare disease community a force for good on the internet, an inclusive grassroots patient movement.

How long has dazzle4rare been around and what is the goal of dazzle4rare?

We started the summer of 2016 and this year, 2018, will be our third year. Our continued goal is to network with rare disease communities of all sizes, collect their messages of education, advocacy, and hope, and spread those messages to other communities. Between us all, globally there are approximately 350 million people worldwide who are living with a rare disease. That is an overwhelming number but my hope is if we can reach a fraction of those people and their families with our messages, perhaps we can help affect some change in people’s lives. Whether that change is learning about a condition that they may be living with as a diagnosed person or whether that’s finally connecting with others who share their condition or learning how to advocate for themselves more effectively – however the end result works, it is an absolutely worthy cause. I do not want mothers to spend hours awake at night wondering where to turn for help for their rare child, or another young person to lose their life too young because their condition is poorly understood or unresearched, or a person like myself living for decades searching for answers which seem unattainable. There is tremendous strength in numbers.

Thank you, Anna, for giving me the opportunity to share a bit about #dazzle4rare with you and your readers!

 

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“Alone” Poem By Anna Werrun

0F8ECFE6-10D4-416F-970A-8C9BEA427018***Please note this poem maybe trigger for some as it’s theme is around abuse, and how it leads to dark thoughts. Abuse leads to someone feeling as though they are not good enough, they feel as though everything is their fault. Sadly some people in abusive relationships take their lives. This is meant to shine a little light on a thought pattern abuse survivors can fall into. Please read at your own discretion.***

Here I am again,

sitting,

perched perfectly in black.

Darkness surrounds me,

Thick charcoal of life choking my lungs.

Picture me now,

staring down,

hollow,

shallow shell,

you call your depth.

Broken,

it breaks.

Alone,

always alone.

In pain,

in the bondage,

I am bound to reality

to dark for words to speak.

The inside weakens,

stress taring apart the last bit of my humanity.

 

I sit perfectly parallel with my thoughts,

as they enter and exit my mind.

Swirling round, alone, alone you find me here.

But you do not find me at all,

for I am thinning,

slowly sinking into this world,

being devoured by the darkness you left behind.

Disease, disparities, determined to detach.

I am decreased and soon will cease to be ever more.

***Please check out my latest YouTube video about mast cell disease and sinus issues. https://m.youtube.com/watch?v=txjBrbIcl24

Also check out the lastest episode of Zingy The Zebra bringing awareness to all. https://artofannawerrun.wordpress.com/2018/06/14/zingy-the-zebras-positivity-challenge/ ***

My Full Time Job: Being An Advocate

IMG_4308Whenever I met someone new they always ask what I do. When my response is I am disabled, it’s as though other lose interest. Being disabled isn’t a negative thing, it shouldn’t be portrayed as such. Being disabled is not something to feel ashamed of. Those healthy and with jobs, have a hard time wrapping their heads around the mentality that being chronically ill is in fact a job in its self. This is because we must advocate for ourselves.

What’s my job? I’m a full-time advocate for myself. The only trouble is it’s near impossible to advocate for myself when I am unconscious. I try to educate those around me so when I can not speak they can speak for me. This has been a trying process, many of those I wanted to speak for me have left my life. I have been told “it’s too much to remember,” or “this is to hard…” For me this is life or death, so I fight through the blackouts, chest pains, dislocations, anaphylactic shock, and my body trying to drive me mad. I will continue to try to educate others, info sharing is important for ourself and for others. 

Meetings with doctors where they take an hour or more for an appointment because your body is a ticking time bomb that could go off any second is my norm. 

Countless trips to the hospital, blood work and tests. It’s the cycle of the human lab rat. I am not excited about my job, but I take pride in it. I educate others as much as I can and to honest it is tiring to regurgitate everything countless times. But I do it because it needs to be done and my life depends on it. I care about my body and my well-being, so I do research I share the research with the doctors. I have doctors that follow me (not treat me) but are interesting in learning about me and my diseases from my point of view. This helps others like me.

Today I met with a lovely new doctor whom cares about people with mast cell activation. He is someone who took time to listen to me. He encouraged me use my epipen, to use more of my medication 3x as much and to possibly try two new medications. When a doctor puts into words they fear for your safety when you are alone it puts into perspective the severity of your condition. 

It baffles me those around me don’t read up on my conditions. Don’t learn about how traumatic it is for my body, they don’t fully comprehend the grim relationship I have with disease. Some day I will blog no more, I wont be able to respond to friend requests and I wont be posting anymore on the internet. I feel by writing these blogs, and encouraging others to do the same things can change in society. Break the silence, chronic illness is hard because it takes work to pretend to be healthy. It takes work to keep up with our appointments. I can not have a regular job, because I have far to many appointments.

I am hopeful through my blogging and talking to help others. I hope to do another YouTube video soon as it’s been ages since I did one. Life isn’t what I thought it was, I am still ever so grateful to be alive today. 

Chronic illness is trying to find the time and money to pay for your prescription. It is trying to get people to understand that when you cancel it’s not because you’re being a flake it’s because your chronically ill with a disease or diseases that it never gonna go away. It’s feeling misunderstood, isolated, frustrated, and all the while having to defend your diagnosis. 

Friends and family say “get better,” “feel better,” get well soon. There is also a tone of disbelief that you are unhealthy, as though they don’t believe or want to believe you are sick as you are. Remember people do have the best intentions and sometimes they simply don’t know what to say. Sometimes people don’t know how to listen without offering advice either. Be mindful of how you think of yourself for your opinion of yourself is truly the one that matters.

Things are not easy with illness but know you are not alone. There is hope. Keep doing what you can when you can. Remember doing a little something for you everyday can have amazing effects on your mental health. Do not give up sharing your story. Do not stop educating those around you. Do what you need to do to have the best quality of life. Take care of you, you are important.

Check out the recently published Zingy episode here https://artofannawerrun.wordpress.com/2018/06/14/zingy-the-zebras-positivity-challenge/

Check Out my latest YouTube video here https://www.youtube.com/watch?v=_LtG6bI6FFM

Cancer: Today Is My Rebirth Day

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IMG_4147.jpgThis month I wanted to write about my cancer journey. Ten years ago I was diagnosed with cancer. I was repeatedly told I was a lucky to have the “good cancer.” The fact is what is a good cancer? My cancer metastasized to my lypmnodes, muscles, my parathyroid was removed in addition to my thyroid.

When I was diagnosed I was very confused, at only twenty-two years of age I wasn’t even sure where my thyroid was.

For treatment I had surgery and later doctors used radioactive iodine. I was told I would feel normal in no time.

I am sure for most this is the case however for me my cancer opened up all of my other underlying health issues.

The surgery was around six and a half hours, as my cancer spread into my shoulder. My ex husband decided that for a month I would eat pure organic foods nothing containing iodized salt. In turn no fun foods. For a whole month after surgery I starved my cancer of iodine. Then when I was given radioactive iodine the cancer ate it up; and I killed that cancer sucker! Thanks to my ex husbands diligence I am here, at the time by not keeping yummy foods in gave me the strength to avoid them.

The radioactive iodine was not fun. It made me really nauseous. For some people thyroid cancer is a “good cancer” compared to brain or bowel cancer, however It’s still a treatment process that you go through alone. So I don’t see how that is “good,” a good cancer would be no cancer at all.

It was lonely being in isolation for those two weeks. It was hard. My mom visited me and all I wanted to do was hug her. I desired for my ex to hold me. But I could not because I ingested the ablation.

I never felt lucky conquering the thyroid cancer because it was so advanced when I found out. Due to this it took me a year to recover. However my situation allowed me to help someone close to me, whose cancer was caught earlier then mine. Being caught earlier protected them from a bigger surgery with more life changing effects.

You’re not alone in your treatment process. I think if there was support made for someone like me through my isolation it would have made a difference. But there was no thyroid cancer support group in Victoria. If I had someone showing their support in the isolation room it would have made the emotional and physical difficulty so much easier. Perhaps I can do that for someone. I would love to talk about my journey. There are so many radioactive tears that I shed alone, if someone listened to the hurt I went through it would have been less of a burden on myself.

Cancer is depressing, I lost friends and found it hard to connect with people. Cancer hurts the patient and it hurts those around us. Sometimes those close to us don’t know how to voice their concern or are scared for us and they a walk away.

Everyone’s cancer journey is their own individual journey. I wish I would have talked to other survivors but because of my prognosis at the time I was fearful. I was scared. I did feel alone. If there was someone to talk to it would have helped me realize that yes cancer is hard and it doesn’t matter what kind. I wish on my bad days I reached out for help.

Thyroid cancer is a difficult cancer to get your life back from. I would love to talk to other survivors about their journey. Thyroid cancer is not a good cancer. Your thyroid does a lot for your body. The thyroid regulates hormones and metabolism, which I now take pills for daily. It is hard to handle when people remind you, “it’s a good cancer,” for me that “good cancer” almost killed me. Thyroid cancer is still cancer. We all suffer and sometimes in silence. Share your story. It can help you and it can help others, because we are stronger together. I am at high risk of recurrence, my thyroid cancer could come back at anytime.

I am blessed with life. This year marks my tens year anniversary from my cancer. I am ecstatic to be alive and be able to enjoy and live life to the fullest. I am no longer where I was last year at this time, and I am ok with that. I am happier being where I am with who I am with because love is the thing that heals the soul and body over all.

Thank you to all those who continuously support and cherish me. I appreciate you more than you know. I am grateful today and everyday.

If you had a radical neck dissection like I did and are looking to connect with others please join the facebook group here https://www.facebook.com/groups/151381295386090/

Time Has Changed Me

IMG_3373.JPGThis post doesn’t have a specific theme other than my gratefulness, and to share a little of what I have learnt. I have a post I really want to put out there when the time is right. But that time is not now. I am hopeful in the future I will have the courage to share.

I keep sitting down to write but my mind goes blank and frustration seeps in. Wanting to talk of the past, but not wanting to dwell on it makes it difficult to form the words with my vernacular.

Time has changed my place in life, literally I am not where I was six months ago. I would not change the last six months for anything. I am happy to be where I am now. Life is something that continuously moulds us into a renewed version of ourselves. We become upgraded, updated and ready to face the new.

I am obsessed with self-improvement, I aim to love myself in the best way possible and thus make room for others to love me.

How did I get here? I left where I was, I changed my surroundings and opened myself up to the possibility of change. Taking that leap into the unknown I was afraid, unsure of myself. If I wouldn’t have done it my heart issue would have been undiagnosed and I wouldn’t have found a doctor willing to try me on new heart meds.

Some people believe neglect is not abuse. According to many therapists, councillors and society, neglect is abuse. When someone says neglect many associate this with pets, and children. Not so often do people think of neglect in relationships. As adults this behaviour towards one another is unacceptable, leaving someone to fend for themselves is hurtful. Starving someone of love in its simplest form can cause harm to ones mind.

Neglect breaks trust, and leads to break down in relationships. One cannot live on food and shelter alone, but also need love to thrive and survive.

As someone who has been neglected I can tell you being paid attention to by those who love me like my family has made a massive difference in my life. Love can heal the wounds that neglect left, but remember this takes time.

I know I am where I am supposed to be in life now. I feel a purpose, a light inside me that I had lost so long ago. Reconnecting with myself again has been empowering. I am blessed to have the most amazing Spoonie Sister in my life. She never judges me, she doesn’t push me into decisions she waits for me patiently, she truly supports me. She has shown me a new side of friendship I have been searching for. A sister hood between two sickly people can be formed, and an unbreakable bond has been formed. I am blessed and grateful for her every day of my life.

I am so happy to be here in this moment with support that abounds all around me.

Energy (Spoon) Management

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When someone is told they are ill and they need to take it easy, what does this really mean?  Does this mean giving up all of your hobbies, and everything that you love doing? Does energy management mean solely focussing on the things to survive?

Chronic illness makes us come to the realization we need to slow down, take it easy, and manage our energy. Energy management starts with prioritizing, we take things from everyday life and try to figure out which things need to be done. The Spoon Theory is a great depiction of how to manage your spoons (energy). Energy management includes and is not limited to: showering, eating, work, play, etc. All of these things and much more take up energy. Finding the things that we love to do and putting energy into those things, as well as putting energy into things that are vital to Survival are important.

When we become sick we don’t necessarily know our limits it is important to work within them. If we overwork ourselves and hurt ourselves physically this can set us back loads emotionally, and psychologically. This is why managing your energy is important.

If we overwork ourselves and hurt ourselves physically this can set us back loads emotionally, and psychologically. This is why managing your energy is important.

Energy management also applies to spending time with people. People that bring you good positive happy energy that are encouraging that make you feel better after you hang out with them are important for your survival when living with chronic illness. People that make you feel guilty, unloved, unwanted, like you’re a burden, and generally only have negative things to say about you and your existence or not the type of people you need in your life. Remember a friend, supports, loves, challenges you, never berates you, and loves you. The would never make you feel like a burden.  Granted this is your choice as is everything in your life but please be aware that sometimes the risk of being around those who are negative can actually have a very bad impact on your health.

What is something you will do for you today? Self-care starts with self-love; no one should ever make you feel guilty for taking care of yourself.  Someone that plays a guilt card is truly doing so from a place of selfishness.

For me myself having to cut out negative people actually really helped me. Negativity is the thriving ground for jealousy, hurt, collect, and a mountain of other negative words. This is why I surround myself with people who are upbeat, positive, add wonderful vibes to my life etc.

By saying goodbye to the negative, and embracing the positive I have embrace a new mindset one of warm and welcoming people. Encouragement and support are important building blocks for survival when dealing with a chronic us. To get support, and encouragement from those around us we need to have strong, reliable friends, who are understanding of our illnesses. The right friends will never question you, they will believe you, they will support you and encourage you along your journey. Hold onto the good ones, they are worth it.

Letting go fo the toxic people who bog you down opens your eyes to those few and far between true friends that will last a life time.

If I don’t manage my energy I don’t have time or energy to do the things that I love and enjoy. A lot of my time spent recouping, trying to figure out what day it is, hoping that today will be a good day, and making sure I’m doing everything in my power to take care of myself physically. If I don’t manage my energy I cannot take care of myself. I am important. You are important, your energy is important, and no one should ever make you feel like you have to spend your energy on them. People should always be open to the possibility of things changing any given minute when dealing with someone with a chronic illness. No one should ever try to monopolize your energy, it is your energy.

Saying “No,” to anyone is your right. Manage your energy, your spoons and your life how you see fit. You are worth it. Believe in you. I know I do. I remain hopeful always.

Please check out my latest on line comic of Zingy The Zebra. On the blog now! Zingy the Zebra wants to talk to you about you deserve love no matter how sick you are. Zingy wants to bring you knowledge of Ehlers Danlos syndrome. Make sure you are following my art blog to be updated when the comic is published.https://artofannawerrun.wordpress.com/2018/03/29/zingy-the-zebra-you-deserve-love-even-if-you-are-sick/

Arrival In Life; A New Chapter For Me

2734CC9D-538E-4C5B-9110-08971AF0C85ATimes like these, make me wonder, time twirling round and falling down like snowflakes in the winter sky. When I arrived in Calgary I was greeted with the cold bite of winter. I felt as though I was home, yet, broken. Trying to find the words to express everything I have steadfast repressed.

Time changes everything, things will never stay static. Nothing in life is permanent we either dig our heals into the ground and refuse to move or we keep making gradual steps forward to a new future. We cannot change another human being into who we wish they would be, nor can we make them even realize their own potential.

As much as we wish people would grow and blossom into the beauties they are meant to become. Many lay choking, dying in their regret, their stubbornness and their fear. Life is too short to remain stagnant. Why not choose to grow? Why stay stubborn and blinded by pride.

We cannot change anyone.

Care givers burnout is a real thing. If you continue to live in avoidance of your partner because of their illness you are hurting them. This breeds neglect, and abuse. The outsider truly doesn’t know the insiders view.

Life with chronic illness is different than anything I have experienced in the past. Melting the old with new, we transmute into something new. Falling away, embracing the new life, letting go of the past, learning to live and love again.

Broken we come into life with illness, healing and community is what we find. No matter your journey, no matter your illness, you deserve to be treated like the goddess/god you are. Never let someone take your love for granted.

You, yes you are precious. What are some words of encouragement you would say to someone close to you going through a rough time? Now say those words to yourself. Supporting yourself and practicing self love are vital to survival in the lands of illness. Never let anyone down play your journey, share it. Your story can help other, and will be inspire change.

Just to touch on the last blog post how are your can do lists coming?

If you missed my newest YouTube video you can check it out here. https://www.youtube.com/watch?v=JYob10RYKL4&app=desktop

Chronic Illness And Suicide

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***Please note this could be triggering for some however is intended for awareness. This is intended to break silence on topics that many find to be uncomfortable to discuss. Please be respectful of those who are emotionally sensitive, those who have contemplated suicide, and those who struggle with these thoughts. There is much controversy about suicide. For the purposes of this post I will be addressing it as the most negative expression, someone taking their own life out of desperation. I’m not addressing assisted suicide, which is its own separate act. You are welcome to your views and opinions.
Please know that this is written to help spread hope and to hopefully help others realize they are not alone.***

Chronic illness and suicide. Something many of us don’t wish to address. The fact is many of us who are chronically ill struggle with these dark thoughts. We either over share our journey, don’t share enough, or we withdraw into ourselves, hoping our pain will never touch others.

Many times, we lose our sense of self while being ill. Prior to becoming ill, many us had a sense of identity through our job or favourite hobbies, which we are perhaps unable to do now. Chronic illness brings us to a place where we must face midlife events. In this event we reflect on years past and think about how our lives have changed. We can adapt by realizing that our path is different and we can rebuild a new life.

If you are in this stage of identity crisis, make a list of the abilities you still have, the things you are still able to do. This may help you gain some perspective.

When we over share, we are searching out connection with those we love and respect. When it is not reciprocated we can wind up feeling isolated. The isolation leads to us becoming depressed. It is okay to be depressed reach out, talk to professionals or confide in a friend. Please do not isolate as isolation is a breeding ground for suicidal thoughts.

When we share a little, we became frustrated with the fact that our healthy friends can not relate to us. Some of them make this more difficult for us by expressing their, “get well soon wishes,” when chronic illness is chronic. Chronic means never getting better, it is means forever. When people say things like, “get well soon,” or “hope you feel better” to someone with chronic illness it isolates them and leads to depression. It would be suggested that someone would say to a chronically ill person, “I hope you feel as well as possible.” This is a supportive gesture, instead of a mircoaggression.

Not sharing at all and withdrawing into ones’ self is the worse stage to be in. In this state those of us with illness believe our journeys do not matter. We begin to believe our pain doesn’t matter. We think others will never understand so what is the point in even sharing our challenges. By withdrawing, we isolate and become depressed. Share your story, you can be the light someone else is looking for in the darkness. Connecting with others who have had these thoughts, can help you. Depression can also become a building block to build a foundation that will take you to a positive place. For many people depression only leads them to negative expression, such as suicide.

Bullying online, in person, and all extensions of this can also lead to people taking their own lives. If someone is continually torn down by someone by being thrown into the negative sludge of disgust, and other people can expect the person being bullied to be unaffected. Not everyone can or will let words roll off them like they are nothing. Some bullies will bully people with the intention or completely destroying their target. Compelling their target to eventually attempt, and perhaps eventually kill themselves. This is heinous.

Suicide is no laughing matter. There is never a good or right time to bully someone just because they are different. If everyone were the same life would be mundane. Suicide is a tragedy in the sense of the loss of life, and heart-break left in the wake.

Negativity being thrown at someone regularly can trigger a spiralling negative thought pattern. Sometimes these are not even our thoughts they are the thoughts bullies/abusers place in our heads. These thoughts should never have been in our heads in the first place. The thought pattern can be like “I am a burden.” “I am not worth loving.” “Everyone would be better off without me.”

If you are sick and thinking any of these thoughts or feeling like this, perhaps it is time to take a step back. Re-evaluate yourself. Wouldn’t you rather be the reason someone smiles, thanks you, and who can encourage others in the way that you need to be encouraged right now? Being a bully or negative harms you and others. Lashing out isn’t beneficial in any case. Remember that sometimes you can be the person exhibiting toxic behavior with people who may not be the target of your original frustrations.

In some cases, our loved ones are the ones that end up abusing us, pushing us close to the edge of suicide by discouraging us or acting out against us in cruelty. Some caregivers refuse to get help for themselves. Not getting help as a caregiver can cause them to become an abuser towards the person for whom they care. Sometimes the abused and chronically ill will lean towards to suicide as an option, as it is the only way to escape our condition. Caregivers can abandon the person who is ill as means of escape. We cannot escape our condition until the day we die.

Sometimes an abuser will say something terrible like, “if you wanted to do it you would just do it. You wouldn’t just talk about it.” That kind of statement is never ok and can send someone on the edge right over it. That is, in itself abusive.
Caregivers burn out can lead to abuse and turn a caregiver into a bully.

The world would not be a better place without you in it. The world is a better place because you are here. You are advocating. You are an activist. You are a brave soul! You fight battles no one sees. I see you, you aren’t alone, you may be struggling and that’s ok. Please do not give in, do not give up. Use your hurt, your frustration, for something positive. Let it fuel you to continue to raise awareness. You matter. You are loved. Sometimes we don’t even see those people right next to us that love us unconditionally and they never will leave us. They love us by staying with us through all the hardships.

Remember unconditional love is not bullying, it’s not hateful or spiteful. Unconditional love is not judgemental, keeps no records of wrongs, it is in fact supportive. Please love yourself. I sure hope you see your worth. You are worthy of love; respect and you deserve to be treated like the lovely soul you are.

 

A Poem By Anna Werrun “Destroyed”

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Time and time again I turn to you
The same thing rings true…

Ripping, shredding any bit of hope or peace I find.
I can not concierge in conversation in confidence.

Silence is the only thing that protects me from you…
Bury, shove it down, quiet any happiness and joy.

Beating, breaking me down.
You smile at your spoils of this thing you call love.

You don’t know love.
You hate me, your will stronger than any other.

I try to keep my hope buried down around you.
If I don’t, you will steal if from me, and find the bad in my good.

Tearing it into the shit you call realism…
when all you do is push me around and put me down.

To far in to go, to broken to stay
To much to say and no time.

Words lost, time fleeting, leaving my lifeless hands…
You won’t change.
I am wanting you to be someone you are not.

Your disinterest in me is deafening,
Your distaste for me is distressing,
Your disheartening, dissonance, disjointed and destroys me.

Just an obligation not a commitment just someone to make to feel trashy.
There is not love only lust.

A broken hearted lovers fantasy.
I am of no interest unless I seem detached.

In the cover of night when no one is around,
there is no sound. It whispers to me to end it all…
Dissolution, I am destroyed.

My Sweet Zebra By Jamie

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Where are you from tell me a little bit about yourself…  –  Our family lives in Texas, USA. My husband and I have been married for 14 years, and our two boys are 6, and 8. We home school, which is fun and exciting most days. And we have one dog, a pit bull named Chevy, who is the greatest dog ever.

What is your name, age, and disease/invisible illness/mental health? So, I’m Jamie 37 mom and I have PMDD, then there is my husband James 37 who has a mild case of EDS, Seth is 8, he has EDS, Autism and AAOCA and Sebastian is 6 and he has EDS; that really affects him.

When did life change for you? Life changed for our family May 2016. Sebastian had already been experiencing pain but we didn’t know what was going on. In May, he was sent to the ER, with tingles and pain in his neck, arms and hands. From there we got sent to a rheumatologist and received our diagnosis of Ehlers Danlos Syndrome. After that they requested my sons have echocardiograms, and then it got worse, we found a hidden defect in my oldest son’s heart. That requires surgery.

What was life like before diagnosis? It was normal! It was easy. And to be honest there are days I long to go back to them! We played, hung out, took trips, the kids played without worrying and we laughed when my son rolled himself into a ball or squished himself into a box for fun.

How has your diagnosis changed your life? It’s stressful and complicated, Sebastian sees 4 specialists, he is on nerve medication at age 6! He hurt himself going down a slide. He hesitates to play and join in activities that other kids his age jump at the chance for. Our weeks are full of therapy and nights full of medications and topical rubs. Seth is limited not only because the EDS but because of his heart, he is not allowed to play sports, or run. And he wants to run! He wants to be as fast as Flash. BUT, I’m thankful for it. Without we wouldn’t have answers, Sebastian wouldn’t have been in PT for over a year and made so much progress. Seth’s heart defect wouldn’t have been found and he could have been taken from us. So as hard as it is, I’m thankful we found out.

Please describe the best you can a day in the life of you?
Our day is dependent on the night before. If Sebastian didn’t sleep well, we are all kind of groggy. Because we homeschool we wake up when the kids are ready. Slowly, if Sebastian’s body doesn’t have time to “warm up” his pain is amplified. We start with gentle rubs and stretches and then once he’s up we have breakfast. After, we start school and the kids learn and play inside and out. We have several different sensory swings, and equipment that we use. Gentle exercise and Pt at home, unless it’s a therapy day. Therapy Days start at 9:30 we leave the house and drive 1.5 hours to get to the facility. then it’s therapy from 11:30 to 6:00 and then the drive home.

By the afternoon Sebastian is worn out and usually laying on the couch, Seth is not effected the same as Sebastian so he is usually in his room playing. After dinner it’s bath time, time for medicine and night time rubs.
Hopefully Sebastian sleeps well, otherwise he wakes several times with pain in his legs and back or tingles down his arms and hands.

What was/is the most challenging thing you have faced because of your diagnosis?
As a parent, I think the most challenging thing is just trying to get everyone to understand. We got lucky with Doctors and have had good experiences. It’s other people that see the kids play (on good days) that think there is no way they could have issues. It’s been hard getting people to understand that not all disabilities are visible. My kids have been called lairs and they’ve been pushed beyond their limits because a stranger or friend doesn’t believe them. I’ve learned to be a pretty good Mama bear since first being diagnosed

Do you find that you can keep up with others?

My husband is pretty mildly effected and he does a good job at keeping up, Sebastian has trouble with this and he is limited, but that doesn’t stop him from trying his best. Seth is only limited by heart, his is also mild and he rally pushes himself.

What would you tell others living with your diagnosis?
We get it, and I know what works for us may not work for you but we will be there for you. Don’t be afraid to stand up for yourself or others.

What would you like to tell others that don’t live with a similar diagnosis?
support us, rather than tell us how sorry you are. Support comes in many different ways. Listening, helping where you can, believing us, spreading awareness with us, those things matter most

What have you learnt on your journey? For me personally I have a unique perspective, my mom has chronic pain, and now my children, I’ve learned to not take things for granted, I’ve learned to stand up for myself and, my kids and realize I don’t have to please everyone. And not everyone deserves a place in our life and that’s ok.

Is there anything you would like to add about your journey?  My kids are fighters and I hope that I have instilled in them the strengthen and courage to continue to fight. I know that it’s a long road ahead but we are ready. We’ll get through it together. A little Zebra Herd.

Follow their journey on Facebook here https://www.facebook.com/mysweetzebras