Stop The Zebraphobia
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My name is N.M. Rose Guedes, I'm often called "Rosie." I'm a loving mom, wife, friend, music artist/artivist and advocate fighting for my life (safety and quality) with a complex, unusual, serious, and very painful condition. I am a "zebra", one of many all over the world. What we go through are things I wouldn't wish on anyone. We desperately need change. We need societal awareness, compassion and concern. We need more research.
I hope you will consider taking 15-30 minutes of your time to learn about and support this issue.
"Zebra" refers to Ehlers-Danlos syndrome (EDS) and it's similar/related co morbidities such as dysautonomia (dinet.org) Medical zebra refers to "exotic" or "unusual" condition, which EDS is.
EDS is a mostly invisible but very serious condition. It's a genetic condition which causes collagen, your body's "glue", to weaken and break down (due to poor collagen synthesis that can get worse with age/over time.) Collagen is everywhere in your body, this can seriously affect many body systems. Yet people are suffering discrimination, hurtful treatment and lack of access to proper medical care.
I hope to get as many signatures, comments, and stories about personal experiences being zebra, as possible. To garner more widespread and solid support, for how serious this matter is. I, and thousands of others in similar positions, have experienced so much pain, agony, trauma and neglect.
I speak from the heart and from personal experience. I'm currently in a progressed state, after a lifetime of suffering (starting in childhood) yet the whole time being disbelieved, neglected and gaslit. I was eventually correctly diagnosed with my condition, four times in fact, but still way too late. I am still having a very hard time accessing the right type of medical care, therapies and resources, for my condition. I'm not the only one. I feel I need to speak out, to not hold back, as well as pursue my dreams in the ways that I can, in spite of being stuck at home and most often in bed, battling multiple internal and structural issues. I have an illness which causes my body to slowly, painfully fall apart in it's structure and internally, and yet cannot access the healthcare I need. I'm not the only one.
Thanks to the internet I can still make a difference and speak out before I cannot, and I intend to try. The way people with Ehlers-Danlos, dysautonomia and similar chronic illnesses are treated is simply unethical. It is neglectful and sometimes abusive, on a global scale. Some countries and areas of the world are worse than others, but the problem is widespread. We need to stop the 'Zebraphobia.' This means, medicals and society all over the world need to learn the facts about "zebras" (those Ehlers-Danlos syndrome, and related co morbidities.)
These conditions are NOT rare, but becoming common - enough that it's edging towards a global health epidemic. We need to shut down the "zebraphobic" attitudes which cause societal misconceptions ie. skepticism, cruel and ignorant assumptions ("attention seeking", "dramatic", "fakers", "malingerers", "drug seekers" etc) and mistreatments. We need to replace this with becoming informed and honing compassion. People must stop making ignorant assumptions.
Let's spark serious concern and a global 'caring trend' similar to what happened with diseases like AIDS and MS. This could hopefully grow and bring enough concern to start producing things like public fundraising for research, and changes in doctors' attitudes re: how they treat zebra patients. I hope thousands of people will tell us their experiences. We need awareness amongst people. Amongst Society. Worldwide. On Nov 23-25 2018 there will be a weekend long online international Summit where many can discuss the results of this petition and beyond.
I don’t want mine and others' suffering to keep on happening. Please consider signing the petition, as well as sharing it with your social circles, by word of mouth, and in groups. For us, for me, for yourself, for someone you love. I hope we can get many, many signatures. We need respect, compassion, answers and access to help.
Stop the Zebraphobia.
Feb 6, 2018 -
As I lie here in this bed shivering and burning at the same time. In incredible pain and pressure in many areas of my body, especially my neck and the back of my throbbing head, because my brainstem is compressed with C spine unable to support it's weight properly, due to my condition, but although it's getting worse I haven't been able to get help for it. As I lie here frightened with an irregular heart rate, unstable blood pressure, and a tight chest, but dreading going to the ER because of how I could be treated and how long I'd have to wait when I’m already in pain, weak and sick...and the possibility of being turned away. Believe it or not. As I lie here with incredible nausea and painful stomach spasm, suffering a severe flare up of the illness I live with and am slowly dying of. In front of my family. My husband and children that I love so very much. As I lie here traumatized that this morning when I went back to sleep, I stopped breathing for a minute, and woke up gasping. As I lie here, frustrated and resentful that going out yesterday., and exerting myself a lot lately, hashtagging “#stealjoys” and “#riseabove illness' seems to be backfiring again. I'm trying to have somewhat of a normal life and laugh with people and go out and experience things - in spite of being in terrible physical pain and weakness almost 24/7. I can barely do it. It's slipping, and I've been fighting it so hard. Too hard maybe. This is resulting in the way I am today. Though some days are a little better, this is another very bad day.
Can you relate? And if not, can you open your mind and heart to learn why? Because this is not just happening to me, but to many others, too.
You would think that a doctor would be very concerned about my symptoms, right? You'd think that they'd be alarmed enough to welcome me to the Emergency room as a priority, and test me, and make sure I'm okay, and keep me comfortable, get to the bottom of why I'm experiencing these things, offer treatments for it to stop or lessen. Explain to me compassionately what's wrong. Organize proper follow up. You'd think doctors in general would be able to do this. Diagnose properly, and offer what can be done to help. But the devastating answer is: No. They will not do that. They cannot do that. Because I'm a Zebra...and they, or the system that gives them orders, that funds them, has “Zebraphobia.” I've coined a term for what is prejudice. Discrimination.
I ask you to consider giving a little of your time to become aware of this concerning global epidemic. People are being hurt everywhere, by “zebraphobia.” Millions of zebras all over the world. I know it sounds silly, but, I ask for people to consider taking this seriously, with concern, and to consider coining this informal 'term', to describe this kind of discrimination. Let's give it a name. I hope you will tell me your stories if you too are a 'zebra.' Meaning, if you have a chronic illness deemed “too complex, too unusual, too rare', too mysterious” and you were minimized, and told you just need to suffer with your symptoms, rather than have them looked into...and if you oppose this, you may be promptly slapped with a mental health label.
Zebra illnesses are discriminated against. "Zebra" means, it is of an unusual nature which doesn't fit with what is in the current textbooks. The reasons are complicated. They are to do with things like not wanting to part with money for research or resources. Not wanting to take responsibility for the fact that things are changing, illness is changing, healthcare needs are changing, and our environment needs to cleaned up. But who is suffering? The patient. The 'victim' is being 'victim blamed' and it's happening everywhere. To so many.
The main illness I focus on is Ehlers-Danlos syndrome. EDS is a very unusual and complex illness which is misunderstood and under researched. The neglect of people with EDS is unbelievable, and the pain levels, suffering and real dangers of EDS are alarming, compared to the lack of support and care offered. I urge you to look into this. To view these videos (https://globalnews.ca/news/1333401/alberta-woman-facing-massive-medical-bills-following-spinal-surgery/ and (https://www.youtube.com/watch?v=I80HZZrq2w8 and others like it. The mascot for EDS is officially the zebra.
But similar and related illnesses also count and are also treated “zebraphobically”; Dysautonomia, Lyme disease, Mitochondrial disease, Mast Cell disorders, Fibromylagia/Chronic Fatigue/ME etc... Many people have more than one of these conditions, they can co-occur together. Dysautonomia (dinet.org) is a terrible illness compared to the quality of life of congestive heart failure..and in itself can cause heart failure for that matter. Your heart and circulation, digestive systems, all your body's autonomic function can be terribly 'off.' This causes a terrible quality of life. This causes immense problems and can be very dangerous. Yet still, In spite of 70 million people suffering with it worldwide. In spite of it's alarming symptoms, it is also considered a mysterious “zebra” and brushed off or minimized much of the time. It lacks research and treatments, awareness and resources. It can claim lives.
“Zebra” illnesses are poorly understood, though there IS information out there, which many doctors are refusing to look at, and flat out denying. Zebra conditions are being called “rare”.. when in many cases they're actually not - there are more and more zebras popping up, all over the world. Many younger people, even children, suffering substandard care and neglect.
This issue bleeds out into society. Many people have the nerve to call us “fakers” and “attention seekers” and “lazy” - without even knowing us or seeing our in home struggles at all. They do this until we're so sick it is obvious and too late, and then they pity us, or look away entirely. It is so incredibly hurtful and wrong. It has to stop. We're not subhuman. We simply happened to be terribly unlucky - to get a “bullet” in what is seeming a “genetic/environmental induced illness” roulette. Since our illnesses tend to be 'invisible' for so long, people will not accept them. However, there are only a few illness which are actually all that 'visible.' So it's actually very small minded and unfair to make assumptions like this.
These people behave what I like to call “Zebraphobic" towards us. They refuse to believe our experiences are real, they insist that we're doing something 'pathological' and/or they look down on us in disdain. It is similar in comparison to homophobia or transphobia or racism. This is from where the poor treatment is stemming. It must be called out for what it is: Discrimination.
Imagine being stuck at home most of the time, suffering horribly, very poor quality of life, missing out on all the life experiences people should have. Missing out on spending time with people you like and love, foods, movies, dinners, travel, learning new things, art classes, horseback riding, hiking, mountain climbing, beach combing.. You name it. Imagine all of it gone. In its place, a bed, and pain, and weakness, and frightening symptoms, and sadness, and fear – imagine all that while being treated badly by those who you ask for help. While being treated like you must be less than a person, for feeling this way. For being this way. You are an annoying less than a pain in the butt. Or a person to be pitied but “sorry, we just can't help you.”A burden for being unable to work...even though you would in a second..if you had answers and treatments. Not able to get benefits or help for going on medical leave or disabilities, because though your condition is as horrible, painful and poor-quality-of-life causing as Multiple Sclerosis, Lupus, Parkinson's, Huntington's, congestive heart failure, epilepsy even some forms of cancer etc.. it is not being acknowledged as such. How would you feel? Would you want to live at all, this way? Well millions do.
Being sick day in and day out in this way is NO way to live, in terms of ANY illness -and, being sick day in and day out while being abused and neglected and falsely accused of being 'crazy' when you are genuinely physically ill is an appalling way to live. Yet millions are living like this. Millions of “Zebras.”They are pushed under the rug. Turned away. Pretended they don't exist. Or minimized...until they get so sick it is too late. Imagine living knowing and fearing your fate, and it is on it's way to happening, and you feel so powerless. That is the way many are living, especially when they do not have the income to buy their way to safety and help.
I want this message to get across. I'm sorry to sound intense - but I need to be blunt. People are dying. I want people who don’t know about this to know everywhere, all over the world, that there is a global health crisis that needs to be exposed for what it is.
Can you imagine having the flu – a very bad flu continuing on and on, that you're fighting all on your own, from getting worse, and it still does gradually get worse - and being told it doesn't exist? We get desperate and try to help ourselves. We pay thousands of dollars out-of-pocket if we can. On naturopaths, private doctors, private testing, special diets, supplements, herbs, meds, medical equipment even feeding tubes, etc.. It gets so exhausting.
We often do find answers in fact; terrible hormone and immune system imbalances, physical injuries such as with the spine, allergies of all kinds, even toxicity of certain chemicals, and so forth. We are told those things don't exist; Unless we can pay for them to test. They test positive. Yes if we pay lots of money many of us cannot afford, answers do come up, which shows this stuff is real.
But, many of us experience doctors shutting us down when we say what we're sick with, even when we report what should be considered alarming symptoms! They deny and refuse testing, referrals to specialists. They do the opposite of what they should be doing. It feels so trapping.
Or, they may reluctantly refer while writing something negative in your file like “well, she says she get dizzy and feels like fainting every day – seems dramatic, probably exaggerating, has a such and such mental health history.” Instead of acknowledging concerning symptoms, and investigating them as they should - they jump straight to pathologizing them.
This is written down for the other doctors to see and read. It's like cruel gossip. So, you wait months on end for the specialist, with so much hope for answers, only to have this hope totally crushed when the specialist has bias and dismisses you over serious concerns. It's a terrible feeling. It is due to something called Structural Violence (abuse within the systems.) It is a form of violence. It is systemic abuse of power.
This kind of experience has had me feeling so hurt, so broken, so hopeless, so bleak - like I almost wanted to give up - feeling like I've been given a partial death sentence. “Sorry, I don't know why you have heart arrythmias and occasionally feel like you're about to have a heart attack or stroke – there are a few irregular beats here in this (better) day you were having..But no big deal because sorry. We don't know. Maybe your anxiety is making it worse. Sorry. Can't help you.” (while writing down that I'm a neurotic invalid who doesn't know what she's really saying.) How would you feel in this position? When we report terrible symptoms, we're often passed off like this, and/or mislabelled with having some kind of mental illness; psychosomatic, conversion, even factitious. So we become afraid to report serious symptoms.
It's cruel, and it's defamation of character, to accuse somebody of mental health and personality disorder issues because they’re scared and sick and suffering and wanting answers. It is a normal human reaction to experience depression and anxiety when you are continuously sick - especially if you cannot get proper help for it. Regardless of mental health, sick is sick - and a sick person should not be blamed for how they're reacting in place of getting the help that they need. But these accusals are happening all over. I hear about this so often from people that I ask myself "goodness, are there really this many people who are mentally ill and 'convinced' that they're sick? I don't think so! It looks ridiculous; because mental illness based in someone thinking they are, or wanting to be, sick is actually quite uncommon.
Many zebras miss getting diagnosed and even being able to properly self care, due to being 'gaslit' by their doctors. Gaslighting (https://en.wikipedia.org/wiki/Gaslighting is a tactic of psychological abuse that happens to Zebras. It happens when people around you tell you what you are, and deny existence of a problem you’re trying to ask for help. They tell you what your reality is even if they are wrong and you are right. But they abuse their position of power. You start to question your own authentic reality ,your own genuineness, your own self worth - you begin to believe those people. This is what happens to many people in the early stages of these illnesses...until it's too late. This is the dangerous pattern.
Of all the things today for in which people are so passionately opposed to and 'offended' by: Where is the serious concern over the repeated false 'mental illness' accusals, defamations of character, and the continually abusive gaslighting, directed at people who are genuinely sick and need help?
My personal feeling (without getting too much into it) is that the environment is (in various ways) harming people’s health (and perhaps people with EDS and other genes are more sensitive to this.) Responsibility for this is not being taken. Instead, people are defensive and argumentative, to the point of insanity. This is so harmful and unproductive. We need to learn more about how and why, logically, without hype and/or speculation - and how to make adjustments. We need proper, honest scientific research. Not speculation, or accusations. Some things may need to be changed in terms of manufacturing and food supply (while some things may be fine) and the environment needs to be cleaned up - there needs to be accountability for all of this. We know plastics are a big problem, for one. There needs to be discussion without defensiveness and fear of lawsuits. The world must wake up.
There are too many young people debilitated who could be employable in whatever job or career path their heart decides to do, that possibly want to travel, marry, have children, have lives. Or, they have children already but can’t spend time with them like they want to can’t play with them like they want to. Relationships are strained and even destroyed - all because of somebody being sick and becoming a burden on their family who has to help them.Because too many doctors won’t do their jobs. Also, it doesn't help that doctors and medical personnel almost encourage family members to be "zebraphobic" instead of caring and supportive. These illnesses destroy lives and families.
Zebras may present with alarming symptoms to do with the dysautonomia and such, with are shockingly minimized by most doctors. This isn't right. Cardiac arrhythmias and circulation problems are very serious things. There are serious digestive issues to the point that some people need feeding tube’s. Their gastric system actually quits. There have been many instances of people accused of anorexia when they actually have gastroparesis. Which is a serious disorder where your gastric system doesn’t work to absorb anymore and shuts down motility. There have been instances where people have been locked in psychiatric hospitals when they were physically ill. There are instances when people can’t eat or digest and need a feeding tube and are yet STILL accused of having mental illness bring this on somehow. I heard about a person locked in mental hospitals with swollen legs from inability to process their fluids with their kidneys, and they’re told that this is somehow psycho somatic. There are zebra children taken away from parents who have been falsely accused of Munchausen by Proxy. If you ask me swollen legs and all kinds of other physical symptoms prove the illness is there for real - and this is absolutely preposterous to assume that it isn’t!
They call US crazy. But it is they who are crazy. Who are totally nuts. Because the neglect and the accusals are incredibly nuts. It has to stop.
My story, my experience:
I am voice-dictating what I want to say to Siri, for this petition now, for my story. This is straight from the heart. Tears are rolling down my cheeks. I feel devastated. Looking at pictures of me with my family, from the past, when things were better, going out with my family. My children. Looking at pictures of me today, on a good day, dressed up, trying to rise above my pain, seeing me try (desperately) to pursue a music endeavour I waited too long to pursue - you'd see a charismatic 32 year old woman with her whole life ahead of her. Maybe only milder disabilities if any.. I want it to be that way. But it isn't...because actually, I'm in a progressed state of complications with EDS, especially the CCI, which is really painful (http://www.thepainrelieffoundation.com/craniocervical-instability/ what is suspected to be mitochondrial disease (which commonly overlaps with EDS, as EDS is thought to be a 'form' of it) I'm getting weaker and more challenged internally, in spite of my efforts.
I can't even get confirmations and specific help, for most of the complications of EDS. I have had to navigate way more than I should with self management, financially overwhelmed, barely hanging on. Many people could say the same about their experience. I take a special diet, mitochondrial and immune system supports to the extent I can afford, and surface medications to control the worst of it. The management and financial burden is overwhelming. Some of the medication I've had to take (eg. to control heart rate/rhythm enough to keep me safer, to help with unbearable pain caused by the neck/brain compression) are not the better types, for someone with mitochondrial problems. They are 'mito toxins', and may be damaging to my cells. I don't currently have access to ones which would be better.
As much as I can seem to put on a good front (over the internet especially.) As much as I might look 'nice' in some pictures, I don't show much of the other 80% of the time when I'm in bed, with it even being hard to get dressed. I often do my make up from bed, sometimes my hands are shaky, so it takes me awhile. It's tiring but I love it. As much as I may not look like I am fighting for my life, I am. People with EDS often experience misconceptions of being much more 'well' than they are, because, again, EDS is mostly an invisible illness (unless during a very serious, acute flare up.) But even though EDSers have soft skin, which may make us look superficially 'well' or 'younger', we are very sick and challenged inside.
As recent as two years ago, I did look like I was fighting for my life. I was underweight and gaunt. Now I'm on medications (which I had to fight to get prescribed!) to help my digestive organs work better for me, and I gained 20 ibs. But now, since I have gained weight, this has put more weight in my body and my soft hallow organs, which can also cause problems in people with EDS. These organs can drop, shift and prolapse. It is very painful and can be serious. I am experiencing a little bit of this, though it's personal to share. My brainstem is still compressed, by neck is still weakening and destabilizing, it is very painful, difficult and life limiting. I have survived a couple very serious crises, thanks to myself knowing enough about what to do thank heavens, but I'm still not receiving the level of care and understanding that I need. I'm in incredible pain, with incredible limitations. I feel like I'm dying of EDS, and without the dignity I deserve. This is happening to many, many of us. We deserve better.
It all started to worsen for me in 2014. I ended up having a terrifying dysautonomia crisis on a trip. I'd never experienced anything like it before, and that night, I thought I might die. I just pushed too hard, with no help, as I'd been ousted from the medical system. But then, this illness emerged viciously and proved it existed. After that, nothing was the same. I have been three times as disabled as I was. I was only properly diagnosed then, in another country, in a serendipitous situation, after being refused and blacklisted by my own country for years. The diagnosis was made by a world renowned Ehlers Danlos syndrome specialist, who called what was done to me "disgusting." And let me emphasize again that I am NOT the only one who has experienced this disgusting treatment.
It was only after years of neglect, abuse, and then finally after being dragged and down and broken, and getting really obviously sick, that I was diagnosed abroad. Even after that, I was initially refused acknowledgement of that diagnosis back home - until my family got angry and threatened to make a human rights complaint or involve litigation. There was a petition then, too. I had a diagnosis by a dermatologist from 2013, which was initially ignored (even though legally, a dermatologist has the highest authority to diagnose Ehlers-Danlos) and was eventually diagnosed two more times, within Canada, including by a specializing geneticist. He said I am more 'severely affected.' Yet still, this hasn't been taken as seriously as it should be.
There's nothing to properly alleviate my suffering. I'd rather just know (even if it's bad) and have a clearer prognosis. Many of us zebras are being denied even that simple dignity. I have no words for the grief this is causing me inside. I have so much to live for, and painfully, I realize it more than ever today...but it's being taken from me. Slowly, and painfully. I also risk to have a crisis which could take me quickly, too. Especially because I am a zebra, and I run a higher risk of not getting the help I would need, on time. It is so isolating. So few understand. My heart breaks over and over, when I see people get to live more 'normal' lives, do things I used to take for granted. I wish I could turn back time. I didn't know I was a 'zebra' who would get sick with an illness which is apparently too 'forsaken' to 'deserve' help. (This is known as an "Orphan disease" https://www.medicinenet.com/script/main/art.asp?articlekey=11418 )
I was a passionate activist for autism and other issues as “girl outside.” I was attacked and bullied for what I expressed, too, and had to pull away because it was too much. But I’m proud of the best parts of my work because it helped others. I still want to, though I have to focus more on my music art and family, before I can't. I still want to make an impact, even though I'm being so horribly inhibited by a worsening illness that i can't get proper treatment for, myself. I struggle to get my work done, often. Recently I released a music album because my other main passion is music. I’d been meaning to seriously pursue my music my whole life but because I’ve never felt well and I’ve always been treated so badly by doctors. I was gaslit by this, and my self esteem suffered inside. I held back on doing what I loved most. This is the affect this has on people.
When doctors do this to us our self-esteem suffers. Those doctors tried to take from me what I loved most, in the process of breaking my heart and soul. Deep down I believed that somehow I was a “problem person” for trying to ask for help for not feeling well and trying to get answers and solutions. I felt like I must be a pain in the butt. Maybe I “am crazy.” A burden of a person, and less worthy. Maybe I am too "self entitled" (something that was written about me in a medical file, when I was sick, dehydrated and begging for water.)
I love life, and I'm deeply grieving my lack of it. Now that I know that this whole time, I was right deep down, and I was sick after all - I regret allowing doctors to gaslight me, which affected my self esteem and inhibited my life, when I was at least more able bodied to live it. So now, I'm trying to live as much as I can, in the ways I can (more often from home) to make up for it all. I am a 32-year-old woman, mother, wife, friend. I love my husband. I adore my boys. I am a passionate music artist and activist. I’m on the autistic spectrum and, I am actually quite social in my own way (as many of us are.) I'm very interested in people - I care for human welfare. I'm passionate about meaningful causes and purpose. I want the world to change because it needs to, and I offer what I can to do my part. I also love the arts; good movies and TV, theatre, dance, creative fashion and modelling. I love beautiful things. I love scenery in nature. Good restaurants. I love(d) to explore and learn about different cultures. I love great food most of which I cannot eat anymore. I still love to fusion cook. Sometimes, when I'm up to it, I still fusion cook for my family even though I can’t eat it. I love to be creative. But my fine motor in my hands is so shaky, it is so hard to craft these days :'( ..
Yes I love life, and I'm not done with it! But it's being hijacked from me, especially since I had my crisis in 2014, by this grisly condition which is as awful as it is, because I cannot get the care that I need for it. I currently finding myself having to beg the public by fundraising to get to a doctor, to save my life, because my brainstem is herniating into my spinal canal, my cervical spine is becoming unstable, and this is starting to make me really sick. Sadly, hundreds of others with EDS have been forced into the position of things like opening up Go Fund Me campaigns to ask for help, too. If you go to Go Fund Me and search Ehlers-Danlos syndrome especially, you will find hundreds, in terrible, nightmarish positions also. We were born with this thing, and thanks to being failed my medical establishments, we didn't know. We got worse over the years, especially because we knew nothing about prevention and pushed ourselves too hard - and then it begins to fall apart. Then, we find ourselves fighting for our lives, and lacking the resources to save our lives. Shame on the medical establishements for putting us through this.
In spite of being diagnosed with EDS four times (yes, four!) there are awful and cruel things about me on my file, from the past, which remain there when they really should be removed - especially now that I've been multiply diagnosed with EDS, by professionals. In spite of the fact they're aware I have also a disability (I am diagnosed autistic.) One report was so terrible and defaming of my character that I had to file a legal addendum providing evidence to counter it, so it would stop badly harming my ability to access care. It accused me of being a complete monster con artist, psychopathic type, when I am anything but that. It was extremely wrongful and hurtful. I nearly had a complete breakdown, and went into shock for weeks, after reading it. The song "Scarlit" on my album, is about that experience.
At the time I was accused of such things, I was under 100 pounds and very sick and struggling. I struggled with an insufficient pancreas for a few years, and I became quite underweight. But they accused me of doing that to myself for attention and being nothing but a neurotic who was likely 'anorexic' for the sake of getting attention. I had to get far sicker, dangerously sicker in fact - to be even a little bit believed. I've some brushes with danger too traumatic to rehash. I now take medicine for my pancreas, for the rest of my life, so it can function and I can eat better. I now have to take medication to help with bile flow for my liver. I am now pre diabetic. Among many other things. Now, though some medical personnel are a bit nicer to me and I appreciate it, they still act 'averted' to knowing much about EDS. They still don't prioritize me for specialist care, as 'at risk', then they should. Again, it's like I'm treated a bit like an elderly person, with pity but “sorry we can't do much” attitude.
I want more than that, for the damage and hurt done, when it could have been better prevented. There seems to been minimal responsibility taken, for how badly I was neglected and treated, in the past. I was lied to, and gaslit, instead. So yes. I'm angry. I want answers or at least options to extend my quality of and length of life. To keep me more comfortable. I'm still trying to access that. It's not easy when resources are so limited. I know the system can do more than what it's doing for me, but getting through the red tape is so hard, nearly impossible. And I'm so tired.
It's too painful to go on into more details of my experience, though I could write a novel about the hells I've been through, and the damage it created for me psychologically and physically. All of this broke me..though I put myself back together as best I could, and survived. I'm a survivor. I'm still scarred and very challenged. I’m an empathetic and passionate person. I feel and see much more than most people. I find that many of us with these illnesses are of that nature. It’s interesting. However, I have to say that with all I've been through, I've become a lot tougher than I used to be. I've had to become tough. I am stubborn about not giving up.. even though sometimes, I want to.
I figure that if there’s nothing else I can do. If I can’t reach who and what I need to reach on time and I’m going to lose my life, it at least can't be in vain. I’m going to keep pushing. I’m going keep doing my work as much as I can, through my music and messages. I want to be part of changing the world somehow. I want to seek and expose truths. The music that I wrote - all of the lyrics are about struggle and hope, finding your truth, and regaining your self worth. They get to the depth of what I’m saying in a very simple, broad way, that I feel many can relate to in their hearts - while it's also catchy and fun to listen to. I'm proud that I have the album to leave here if anything happens to me. This petition and lobby is just as much on my bucket list as that. With the continual neglect of people with Ehlers-Danlos Syndrome,dysautonomia, Lyme, fibromyalgia/ME etc. there will be more suffering and deaths. Maybe a great many. We need to prevent it.
We need to stop the zebraphobia.
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