Anyone else afraid to go to the doctor because doctors and nurses are overworked and exhausted and dealing with people dying and bleeding out and bedridden with covid and don't have the time or energy to hear about your minor problems

Ehlers Danlos Society Awareness Month (Day 31 Community)

Not all health conditions have what they call a community or a group of others with the same condition coming together as a group to be with, support and help one another. Let's be honest, most conditions don't need a community. There's a lot of conditions that are very cut and dry and easy to understand. There's a group on Facebook for everything but I can tell you right now there's not going to be a ton of people in a Hemorrhoid support group. The EDS group is a very close knit group with much value and importance to those who are part of it and I'll be explaining some of those reasons.

Of course one of the most obvious with having a rare disease is to be able to meet someone like you. To know others exist and to share similar experiences with. You know you can always find someone there that truly understands what you're going through having a condition so disabling you tend to lose most, if not all of your friends, some even lose family. Rather it be due to lack of understanding, lack of belief, fear, or any other list of reasons it seems to happen to all of us. So this is a way to make friends just like us. Friends that won't resent us for the physical abilities we have lost or the lifestyle changes placed on us by this syndrome.

Another reason is well because it's rare. It's surprisingly difficult to find any good information about EDS on the internet when you first get diagnosed unless you know where to look. In addition to this being a condition that lacks studies and research it's also extremely complex. In fact before being diagnosed, even with going to nursing school, I had no idea something this complex existed. If you are ever trying to find reliable information about a specific aspect of EDS it may be really hard to find, especially if the topic you're looking for is very specific. You can go into groups. A lot of individuals have certain documents bookmarked or saved in a word document or spreadsheet and can lead you in the right direction. If we can't find a study done in something we can also use support groups to do our own informal studies. Just simply create a pole and let everyone chime in. Before you know it, if posted in a larger group you'll go check out your pole and may have two or three hundred answers to your question.

Next, with EDS pretty much any body structure is a free game which means lots and lots of comorbidities. A good number of comorbidities are common amongst us which means we always have someone to relate to and ask questions to. In addition to this you can expand your groups to include groups for people with those comorbidities further extending your knowledge and possibility of friends. Most doctors don't know anything about these conditions so that leaves it to us to learn everything there is to know about it. When you finally think you have read everything there is on the web, others read thousands of sites or journals you haven't come across and ones you have read they didn't know existed so it's all about learning together and having people who understand.

Being a condition that is so very painful and severely affects sleep as well as causing many of us great depression and guilt for what we've lost and the deterioration our body has been through as well as the feeling of loss. We feel guilty for everything we put out families through, for needing help, for canceling plans and letting people down. Not only as if what we once were has already passed away but also the loss of friends, many times every single one we had before this illness and sometimes family members. We grieve the loss and are angry to learn that people we thought were our best friends and would never leave disappointed in us like a used paper plate. This is also the time it dawns on us how many of these people used us when we were healthy to provide them with things we need. Most of us have OCD or are on the high functioning side of the Autism Spectrum so tend to take responsibility and do things right, including not letting down our friends and family very seriously. Most of us thrive on routine and rules and chronic illness often gets to a point that a lot of this is no longer possible forcing us to make decisions last minute, change them or cancel them last minute, not be able to complete things by a time we have set for ourselves etc and that's really hard. It's helpful to know others who are or have been going through the same thing and to know you're not alone, not the one letting yourself and others down and to be told it's okay and it's not our fault.

The majority of us also have Medical Trauma Induced Complex Post Traumatic Stress Disorder. We spent years of our lives rather you're lucky and got diagnosis in two years or ate 70 and have spent the last 55 years actively seeking a diagnosis we all have to fight for one, to see doctor after doctor and oftentimes the worst part of it all, be miss diagnosed with psychiatric disorders such as anxiety and Conversion Disorders. These are extremely dangerous and life threatening diagnosis for us because it essentially closes the door on even looking for a cause of what is going wrong with us. Conversion Disorder is a Diagnosis given after all other conditions have been ruled out the problem is, doctors use it as a crutch to not have to deal with us. We are also superstars, especially in the beginning at having beautiful results when it comes to basic blood tests such as a CBC. The problem is, again, doctors are known to cut corners because they like the majority of mankind are lazy creatures who tend to want to just get the job done. It doesn't matter if it's thoroughly done and done with utmost care to put as much effort into it as they can, it's just done and to them done is good enough so they do the common tests and call it done, close the book and slap a label of conversion disorder on us that follows us around for life for every other doctor to use as an excuse to say they are done too. It takes years to find a doctor who is in it for the better of the patient; one who is up for a challenge; one who is willing to do more testing and testing that is more advanced and most importantly, a doctor who believes us and is willing to go the extra mile. It's when these less common tests like a Tilt Table Study, Gastric Emptying Study, Urodynamics Testing, Upright MRIs instead of doing them in the prone position, Sweat Testing, a Sitzmark Colon Transit Time Study, a 24 hour urine test to measure histamine levels, skin biopsies and ultimately EDS Testing via either the Brighton score system along with a through study of the body and some questions used to determine a positive or negative diagnosis or Genetic Testing to determine a type of EDS that has a genetic mutation that has been discovered. Not all forms of EDS have had their genetic mutation discovered yet which is why the other study is so important. There are more tests that can be utalkzss than the ones mentioned but as you can see, none of these are tests that are done on a routine basis and a lot of doctors don't want to deal with them slapping the psychological, "all in our head" diagnosis on us prematurely.

This results in us without a diagnosis for what we have going on with our body. When this happens we aren't receiving treatment for the symptoms we are experiencing allowing them to escalate. To make things worse we are often given the wrong treatments, handed antipsychotic medications that cause even more adverse symptoms and don't work. When they don't work the doses are increased higher and higher resulting in more to go wrong with our bodies. This also closes the door to treatment causing doctors and hospitals to dismiss life threatening issues, sending us home when we are actually so sick we should be in the ICU. I myself was declared clinically dead at least 10 times before my diagnosis, four because my heart stopped and I went into cardiac arrest and the rest because my blood pressure would drop below 60/20 which in the medical field is a pressure that is considered legally dead. With all but one of these I was sent home within an hour to a few hours of it happening simply told that was weird and sent home on paperwork for Conversion Disorder, Hypochondriasis, or some other psychosomatic disorder and is I was lucky this would sent me discharging me with a diagnosis of low blood pressure and that was that. One of my codes my mom was in the room, thank God for her. When I code no one came. My mom went running down the hall begging for help pleading for a nurse to help because no one was running to my room. The nurse told her I'm probably faking it and just pulled my leads off and told my mom just to ignore me because people like me feed on attention. My mom ran back to the room and thank God had some medical training as a girl scout leader because she had to take first aid and CPR. My mom brought me back. The nurse walked in right after and checked my wires. They are still in place. My state as well as several others protect their medical personnel against malpractice suits so there was nothing we could do. I've been sent home with gastric ischemia which is a life threatening condition where the blood pressure increases to dangerous levels in the intestines. It can cause the pressures to get so high it bursts and dissects blood vessels in the intestines causing a person to bleed to death. I was sent home with a diagnosis of General Psychosis and Anorexia as well as treated for anemia and vitamin deficiency. They blamed it on anorexia, not the fact I physically couldn't eat and was having bowel movements that were nothing but pure blood that everyone. Refused to look at. I had an allergic reaction so bad it almost killed me and was sent home diagnosed with conversion disorder and sent to my doctor who wanted me in ICU but upon refusal from the hospital to see me again even with my vitals so poor my doctor had to take care of me basically sending me home with what I called a take home hospital and working with my mom over the phone to take care of me available all hours of the night. I had a nurse try to give me 50 times the dose of this same medication that caused this. Been sent home with intestinal blockages, hernias, extreme dehydration, a UTI after they said the results came back negative only to get them in the mail a week later to see they were positive and by that time my UTI was so severe I had a kidney infection and was in kidney failure. I've sat there days and nights in a hospital bed where nurses refuse to answer my call light saying I have a conversion. Disorder, don't need to be there and I'm wasting their time and resources taking up a bed for someone who is really sick and that they won't be coming anymore the rest of the night not knowing I was one of the sickest ones on the ward and just misdiagnosed. I've had nurses rip IVs out of my arm, ya know how they push you to your car when you're released? There are a lot of times they pull my IV, tell me I'm not sick anyway and can do it myself having to take multiple trips to get my personal belongings out of my room. When I lost the ability to walk I had multiple doctors tell me I could and would pick me up, put my feet on the ground and the. Let go of

dropping me on the floor. This happened a lot at OSU with their doctors. Again and again dropping me and seeing I didn't have that natural response to catch myself and went straight into the hard tile floor with my fragile and damaged connective tissue would they say hmm. You really can't walk then send another doctor in who would do the exact same thing. I got picked up and dropped four times by four different neurologists just in the first week of being paralyzed and it's happened time and time again after that at other neurology appointments. I could go on and on. This is the stuff a lot of us go through. It's extremely common with EDS, most of us have complex PTSD.

Most of us have an extreme fear of going to the hospital because that's when we are at our worst and at the same time, a time we get treated worse than anywhere else about our chronic illness. We go in knowing it's a game of Russian Roulette with a really high chance we will be sent home sicker than I came in. Worst of all, there's no way to treat our PTSD because it had to be treated by a doctor, the people we have the least trust in. Not only that but the cruel mistreatment never ends. Every hospital visit. I have had good nurses before but I have never gone to the hospital once where I can say everyone was good. I hear a lot of healthy individuals say endless good things about the hospital staff they had or they have some reason they have to go. When you have a rare invisible illness like EDS we aren't given that same care. The appalling lack of medical care never ends therefore it's impossible to even treat our PTSD. It's not like someone in the military who is in a war and when the war is over, it's done, they never have it go back and can get treatment and start to heal. It's like having to live the rest of their lives in that war as a POW who has been captured and imprisoned by the enemy and every time they get out they are found and imprisoned by another enemy and another enemy and then going to see a psychologist who happens for this only to find out the psychologist is one of those enemies from the other side who captures and holds others line you as POWs yet wants to try to help you get over everything that has happened to you even though you're still occasionally been tending by someone else and beat up before getting away again. Seeing a psychologist for us just doesn't work. We have no trust in the medical field and the gross mistreatment and lack of care is never ending. The EDS community can relate to this when one else can. While the healthy people we know, the people we grew up with, who became nurses and doctors themselves get mad telling us those doctors and nurses are heroes, they can do no wrong. That stuff doesn't happen, they are made up of the most caring and compassionate individuals. Those in our community and other rare or invisible disease communities know that degree of mistreatment all too well. We know the truth about the medical field.

We know they are no different than any other company. Identical to the people making minimum wage in a more trivial position such as a greater at a retail store. There are the good ones who take their job very seriously and want to do their job to the best of their ability truly valuing hard work and are highly motivated individuals but most people at a job are just working because they have to. They have bills but if they were multimillionaires there's no way they would be there now. They want to get the job done and go home. It doesn't matter how they get it done, it's just got to be done. These are quantity over quality people. They take working smarter not harder totally wrong, defining it in their mind as taking any short cut necessary to get it done. Ya know how at most jobs they would have, for example, 50 people but there are three of them that seem to pull all the weight. The three everyone thinks takes things too seriously because they hardly leave their desk or station. They don't take the time to walk around socializing and joking around with their peers. When things get behind they are the ones who stress and work really hard to get things caught up where others say I'm not getting paid any more, I'm not going to bend over backwards and stress about if they aren't paying me more. The three people first to volunteer for overtime and the least to grumble of the boss asks them to stay over another 15 minutes to finish something while on the other days a boss May say that if you get your work done you can go hike and everyone rushed to gst the job done to get out the door while those three are left sitting there at their desks to get the job done right whole also correcting others work that was hastily submitted so they could go home or start the weekend early. Just because someone is in the medical field doesn't make them any different from those who hold other jobs. If most of them won five million dollars they would be out of there. Forget the two weeks notice, heck they don't have to work anymore. Someone else can take their patients. If they're told its slow and they can go home when all the patients are out then one more comes walking in the door as they are packing up their stuff there are a lot if doctors will look to the people who are still working and say hey, I'm about to head out of here, do you mind taking this last Patient? It's human nature.

As generations have gone on more and more people are lazy and the medical field is no exception. When you're chronically ill and have spent a lot of time in the hospital it gets really easy to spot those three people. The ones who if they were multimillionaires may cut back their hours but would never dream of leaving their job because their job means more than money to them. They take great pride in making people better, getting them diagnosed, saving lives and they can't see life another way. Those are the good ones. The good ones line any other job. They are far and few, they pull all of the weight, are walked on by other staff members, their managers usually fail to see their accomplishments as they don't spend a lot of time just hanging out with workers at a patient's expense. They are the ones who will advocate and fight for their patients to all ends but like any other job, maybe five percent or one percent or any other single digit percentage of the employees are these people so EDS patients my get one person on their care team that is amazing, maybe two but will never get a whole care team and it seems like the good ones get more far and few the higher the position. I've had more caring and compassionate house cleaning staff. STNA's, more good STNA's than LPN's, more LPN's seen to be there for the patient then RN's and more RN's. Doctors.

I don't think I've ever had a bad Volunteer at a hospital. The volunteers just love to be there for the patients, to put a smile on their faces and to know they made a difference in our lives. Rather it be to bring us a coloring book and crayons, their Emotional Support Dog around to visit us (which is my favorite) bring us a warm blanket or fill up our water containers. I've had one bring me a card and a flower in a small tube of water. The volunteers are there because they want to be there, not because they have to be there. It seems like the higher the person is on the pay scale the more people are in it for the money. Money talks even if it's at the patient's expense and usually if you have a complicated or invisible illness like EDS you are the expenditure. A community is important to know we aren't alone, to share their experiences, some in the group have become medical advocates and will fight for others in their area who can't get the help they need. These advocates, especially the ones with lots of training are invaluable to the EDS community. They may not be able to fix our problems but it's nice to know there is someone out there who tried. When you're at your worst advocating for yourself is extremely difficult and sometimes impossible and oftentimes our families don't do a lot of research on their own so aren't able to advocate for us so having someone who can is more beneficial than words.

As you can see there are so many different reasons community is important and vital to all of us. Some use it simply as a way to relate or a way to make friends like them after losing the friends they had before their health declined to the extent their healthier friends no longer could relate to them and left. Many are involved in the community to gather information and gain knowledge about their conditions. Support groups are also there to talk, especially with so many who have PTSD. We can't trust a psychologist, psychiatrist or therapist as they are medical professionals and talking to a live person is more fulfilling than writing a journal that no one reads. Sometimes it's as if these individuals, having gone through this themselves, know just want to say and how to help us. Some are there as a medical advocate in their area. Someone who can be there for them in medical situations or even just to give them advice as to what to say to make doctors listen, direct them who to contact if they aren't receiving appropriate care and what to do or ask for from our medical personnel. Some even use these groups to find names of doctors that work with EDS patients or places to go where they may be able to get help or even ideas of what treatments work for others with similar comorbidities. There's even a few groups out there run by people who were medical workers before EDS ravaged their body to an extent that they had to leave the field. It consists of disabled nurses, doctors, radiologists and various specialists. This group works to tell us if we need a second opinion. We can post test results or imaging onto the page and since legally they can't have a diagnosis since they aren't currently working they give what's called a "non expert opinion, telling us what they see or would suspect and if we need to see someone else. I find all of these viral and that's why I see the EDS community as not an invaluable and essential part of my life and wellbeing as an individual with Ehlers Danlos Syndrome.