Tag Archives: EDS

The Eighth Amendment: How it affects People with Chronic Illnesses Part II

The Eighth Amendment affects people who have the ability to become pregnant In Ireland.

The Eighth Amendment states that the foetus has the same rights as the person who is pregnant. Ireland and Malta are the last two European countries where abortion hasn’t been made legal. The Eighth Amendment was added to the Irish Constitution in 1983. It means that abortion services are unavailable in Ireland. Even in the case of fatal foetal abnormalities or when a woman becomes pregnant as a result of rape. Approximately 12 Irish people per day are forced to travel to the UK to have an abortion.

Last week we discussed how the Eighth Amendment affected women during pregnancy and birth. This week we are going to explore how the Eighth affects people who are sick and have the ability to become pregnant.

Fellow blogger, Cripple, Baby! has kindly allowed me to share her story. Catherine like me, has Ehlers Danlos Syndrome.

How the Eighth Amendment could have affected Catherine with Cancer:

For me, the Eighth Amendment brings to mind of when I was diagnosed with cancer, back in 2013.

No I was not pregnant, no I was not planning to become pregnant, and no I was not planning on having an abortion. Yet the tone was set for many a discussion around such subjects, the very minute I was diagnosed.

One might assume this conversation would take the form of discussing options for egg preservation, in case of future fertility problems. Although this was never mentioned really, only glossed over. A simple “I’m sure you’ll be ok” was all that was given in this respect.

My period was a good sign

Something I realised was vastly different from the experiences of UK cancer patients, through discussions on support forums. I can only assume such options aren’t granted free by the HSE, and perhaps some doctors just see it all as a bit “icky”? I really have no idea. In fairness, I never pushed the issue. The only guidance I was given with that side of things was the nurse whispering to me during chemotherapy inquiring about my periods, stating that a regular flow was a good sign at least.

No, this was not the route of the pregnancy conversation. The one and only topic was around what would happen if I became pregnant during my treatment.

Of course I was advised to use all the contraception possible, to not purposely become pregnant during this time obviously, that would be insane. But as we all know, even with all the contraption in the world shit happens.

In this scenario the woman has two choices (in other countries) continue the pregnancy, reduce your treatment (or not, but it would be advised) or plan a termination, in order to give yourself the best chance of survival. Neither option is easy. Yet women make these choices for themselves, all around the world, every single day. And we trust they know what is best for them. Neither case in this regard deserves judgement, they are and should be, case-by-case decisions made by the women themselves and fully supported by both medical staff and loved ones.

The hypothetical foetus

So when I was diagnosed with Hodgkin’s lymphoma in 2013, I was quickly informed of what would happen if I became pregnant. They would reduce the treatment in order to give the foetus the best chance of survival. At first this seems like just good advice, a reassurance that if needs be they will do what they can to help me. I am a young woman of child-bearing age, so it’s all relevant. But this mantra was repeated again and again during my treatment, by various medical care professionals. Many a conversation about saving the life of my hypothetical foetus. To get the point across that in this scenario, in this country, I would have no choice.

It’s something I’ve looked back on often. Sometimes with amusement, but mostly with dismay. It just makes me feel very uneasy. My life is more important than a hypothetical, or real, foetus. The life of a fully grown adult is not equal to that of a zygote. Before we even bring choice into it, that’s simply the case.

As heartbreaking as that can seem in situations where a pregnancy is not viable, or comes with a hefty price. This statement excludes cases of late-term “abortions” due to fatal fetal abnormalities, as we all know that late-term “abortions” are simply not done for the craic (in any country) and any further explanation on that would frankly be stupid and I hope unnecessary. When a matured, wanted foetus is dying in its mother’s womb, it’s horrendous for the parents. It’s not something to be mocked, or mislabeled. And it certainly isn’t something Irish parents should have to deal with, alone, in a different country. A financial burden on top of saying goodbye to their child in peace.

Shit happens

Luckily I finished my treatments without any accidents. But shit does happen. It happens to Irish women each and every day. So I have to put myself in their shoes. What would I have done? Could I have been able to access medical support after coming home from England? Would I financially be able to even afford a termination? Is it possible that I would I be held by the state if I informed my doctors of my wishes? Would I even feel comfortable telling loved ones? Looking at such a broad issue, simply in my own terms, my own real experiences, just  does not cut it. And it shouldn’t cut it for anyone.

To truly look at this Eighth amendment and the restrictions it poses on Irish women rationally, we must not only look at it from how our own lives have gone to date. We must ask ourselves, “what if…?”. This is only one, small scenario that I can place myself in, even though it did not happen to me. Even though (under normal circumstances) I really don’t think I would ever choose an abortion in my life time. There are so many scenarios; so many stories that are not our own.

Abortion isn’t always an easy option but many have no regrets and know it’s the right choice for them; for all sorts of reasons that are none of our business. Many also have no choice.

No one can 100%, truly say “I will never terminate a pregnancy”, even when it seems completely unthinkable in our current lives shit happens.

Criminalising abortion doesn't stop abortion. The Eighth Amendment bans SAFE abortion. Click To Tweet

How the Eighth Amendment could affect Laura with Psoriasis:

I have psoriasis. I’ve had it since I was nine, I’m 30 now. It had peaks and troughs but since being an adult it has more or less stayed the same. It’s not just flaky skin that’s itchy. It’s unsightly red blotches all over. The Psoriasis is on my face, breasts and bottom. No where is safe.

It has affected my self-esteem greatly and at times my physical health when it cracks and bleeds. When I was 15 it was so bad on my arms that I couldn’t raise them further than my chest and my mother had to dress me. That was pretty humiliating.

I’ve been called several names because of it ‘scabby’ being the most popular and nothing makes me retreat to being a child who wants their mother, than an adult who stares.
I’ve had several treatments and have tried many diets and none have worked for an extended period of time. The most relief I had with these treatments was three months.

Hope for relief

So, this year I was informed I was a suitable candidate for a series of injections. These are relatively new. The injections work by changing how your immune system produces skin cells. Psoriasis is an overproduction of skin cells.

One of the main side effects is that my immune system will be lower than the average person. I will be more likely to get a cold/flu and it viruses and illnesses will be harder to shift.

The biggest warning I got was not to get pregnant. I probably wouldn’t carry full term and if I did, we both would have lasting damage. I’m a married woman and perform my ‘wifely duties’ as a certain religious organisation calls it. We use two types of protection but nothing is 100% safe.

This is why the Eighth Amendment needs to be repealed. If I were to get pregnant it could be very detrimental to my health and the foetus. I also know, from having relatives with these conditions, that I couldn’t care for a special needs baby, while ill myself. It would be a likely scenario if I were to have a baby.

Potential pregnancy

My injections are life long, so I can’t get pregnant at all. My health is more important than a foetus. I have a husband and family and friends.

If I were to get pregnant, I would be devastated, particularly as I use two methods of contraception. I would have to arrange an abortion and that would be very upsetting.

Nobody likes having to get an abortion but I firmly believe my health and well-being are more important.

I also suffer with my mental health and to be honest, I’d be afraid that pregnancy would make it worse, due to the impact it would have on my life. My physical and mental health would be put on a back burner if I were to get pregnant under the Eighth Amendment.

I know I would be pressured to put the foetus’ health and needs before my own, even before it’s born. Sometimes I struggle to care for myself, never mind a helpless baby.

People have asked me if I can come off my medication to have children. The truth is, I don’t want to. It may be selfish but I want a quality of life for myself and not having children is a side effect of that. I did initially grieve before starting treatment but now I am fine with that decision. A door has closed but a new one has opened and so far, I haven’t looked back.

No woman has an abortion for fun. —Elizabeth Joan Smith Click To Tweet

How the Eighth Amendment could affect me:

During my last pregnancy, I was in a wheelchair from the first trimester until my daughter was three-month old. Having EDS, there are some risks involved in pregnancy. You are at risk of pre term labour, miscarriage and of hemorrhaging, to name but a few issues. I lost my son’s twin at about seven weeks into my first pregnancy.

Almost immediately into my second pregnancy my pelvis became an issue. Symphysis Pubis Dysfunction (SPD) is a pretty common condition during pregnancy; but not early on in pregnancy. Most women complain of the pain in their groin, back, legs and hips in their last trimester and usually manage with crutches.

The foetus growing inside me was just two inches when my body turned against me. The pain was unreal. I have put up with dislocated joints-even popping them back in myself but this was something else. I could not physically walk without crying. Some days I did try not to use it in order to stay mobile and avoid muscle wastage but even then I had to use special crutches. For days after I attempted walking I would be stuck in bed screaming in pain. Before pregnancy, I was on opiates and they barely took the edge of my chronic pain.

My waters broke weeks before I was due to give birth. I went into the maternity hospital and told them I felt a pop and a trickle. So they examined me and came to the conclusion that my waters hadn’t broken. I went for an appointment in the high risk clinic a couple of weeks later and mentioned baby had been a bit quiet. So they scanned me and lo and behold, half of my waters were gone. So I was induced that night.

Traumatic birth

I was put on IV antibiotics to prevent infection. We were both pretty lucky we hadn’t picked up an infection with my waters leaking.

Several hours later I gave birth but then I started to feel very unwell. I was vomiting and passing out. I was having a massive bleed and the midwives were calling for blood. Luckily, they stopped the bleeding on time and I lost half my blood volume. It took a year and high doses of iron for me to feel “normal” again. The whole experience traumatised me.

Three months and a lot of hard work and I got myself out of the wheelchair for the most part. I still have to use it if I am out of the house for an extended period of time. My pelvis is almost always dislocated and affects my back and legs as well.

Pregnancy could leave me permanently immobile

Progesterone plays a massive role with my condition as it causes my joints to become even more lax. If I were to get pregnant again, it is very, very likely that I will not be so lucky (not so much luck as I put in a tonne of work) to get out of the wheelchair. I have been warned not to get pregnant again. The contraception I am on at the moment but it will have to come out as it is affecting my health. I can not have any “unnecessary” surgery like a tube ligation or hysterectomy. A C Section can not be performed without it being an emergency because I am susceptible to infection, stitches don’t hold well and I would suffer with chronic regional pain on top of the wide-spread chronic pain I suffer with now.

I have two children. I have a husband who is my carer. He does almost all the cooking and the cleaning while looking after our two children and a budding business. There are days where he must help me get out of the shower and even dress me.

If I were to have another baby, I would never have a “good day”. I would be in even more pain than I am in now. An American doctor who used to be an Oncologist has stated that EDS would be one of the top three most painful conditions to live with.

Abortion would be the best decision for our family

I can not put myself in more pain. It is not possible to put my family through more than what they already experience. I have to be a mother to the children I have now

. Ehlers Danlos Syndrome is an inherited condition. My children have a 50/50 chance of having this condition. Both our son and daughter have EDS. Our two-year old daughter is more affected than my son-suffering three dislocations already. I can’t subject another child to this life of pain. I will not. Accidents happen and if I were to get pregnant accidentally, I would have to have an abortion no ifs or buts.

Travelling for any amount of time leaves me bed/couch bound for days. Stress causes my symptoms to flare. If I should need to have an abortion, I should be able to go to my local hospital, have the procedure and go home that night to my own bed, to be surrounded by my family. I should be able to be open about what had just happened and not hide it in shame. I would be making the right decision for my family. The family that is living and breathing.

Up until pretty recently, I was anti choice. It was when I had to travel to the UK for treatment not available in Ireland that my mind was truly changed. I empathised with all the Irish women who had to travel. I cried at the thought of these women being alone because their partners couldn’t get the day off work or because they were raped and didn’t want to tell anyone.

The Eighth Amendment needs to go.

I’m fighting for repeal of the Eighth Amendment not just for me, but for my daughter. EDS gets worse when a girl hits puberty and most of the time, during pregnancy. If she’s already this affected now, it does not bear thinking of how the condition will manifest later on in life. She needs to have bodily autonomy. This condition takes away so many freedoms over our bodies, we do not need anything else taken away from us.

I have started a Facebook page, Disabled People for Choice in Ireland to show the world that despite what the anti-choice might think, there are those with disabilities who believe in choice, no matter the situation.

You cannot have maternal health without reproductive health. And reproductive health includes… Click To Tweet

Some facts from the Abortion Rights Campaign in Ireland:

  1. The Eighth Amendment equates the life of a woman to that of an embryo.
  2. The vast majority of women who want and need abortions are unable to access them in Ireland under interpretations of this law.
  3. Women have already died in Ireland having been denied life-saving abortion procedures.
  4. At least 150,000 women have travelled to other countries to procure abortions since 1980.
  5. Thousands of women are unable to travel for abortion services due to family, legal status, financial situation, or health.
  6. People who procure abortion within the country risk a 14 year jail term. Doctors can be jailed too.
  7. The majority of people in Ireland support much wider access to abortion than is permitted under the 8th Amendment.
  8. The life and health of a pregnant woman has a much greater value than our constitution places on it.

Thank You to Laura and Catherine for sharing their stories with me.

If you would like to tell your story, email hello@thezebramom.com

 

The fault in our genes and the guilt that goes with it

When you’re child is seriously hurt you can feel so helpless. You might feel guilty for not having a sharp eye on your little one when they injure themselves. If you have a faulty genes and a genetic condition that you’ve passed on to your child, there’s an added guilt.

Last Saturday two year old Ollie Pops N’ Clicks was playing happily with her Dad. We had a lovely day up till then, hubby and I were celebrating our five-year wedding anniversary. My Dad cooked us a beautiful lamb dinner and after we retired into the sitting room in front of the stove. Despite having a pain flare, I was content. That is until Ollie started screaming.

She was pulling on her Daddy’s clothes and then all of a sudden her arm was hurting. Nobody could touch it and if we tried to move it she cried. Hubby knew immediately that we were faced with something that happened in 2015. Ollie was just seven months old then. Her elbow was dislocated. She was behaving the same way she did that cold night in November of 2015.

Ollie 7 months
Ollie the morning after she dislocated her elbow the first time

So, we had to leave Bendy Boy with his Granddad for the night as we sped up to the Accident and Emergency Department (A&E) of the University Hospital. She fell asleep before we even made it out of town. I thought maybe she was OK now but when I touched her arm she woke up screaming.

What is a 45-minute journey felt like hours. We arrived into A&E and we were surprised to see how quiet it was for a Saturday evening. Then again, it was still pretty early. The drunks and those involved in fights wouldn’t be in for another few hours yet.

At the hospital

After we checked in, we sat in the waiting area. Looking around I saw a teenager with their arms in a sling, an old man with bandages around his head and another man with a black eye. I was worried that this scene would upset my already frightened two year old. You could tell exactly what was wrong with these people. All you could see when you looked at Ollie was a little girl with a sourpuss face protecting her little arm.

Just like before, the Triage nurse saw us fairly quickly, when we explained what we think had happened and that I have Ehlers Danlos Syndrome. This is a result of my faulty collagen genes. We were taken into the ward.

The last time Ollie was seen in A&E at just seven months old, she had to have an X-Ray. It was torture for us both. I had to move her tiny little arm around in different positions. She cried, I cried. This time however, there was no need to X-Ray because of her history.

When I told the on call doctor that I had EDS, he asked could he have a look at my hands. He bent my fingers back and pulled on my skin. He nodded and turned to little Ollie who was finishing off her second ever dose of painkillers. In two years she’s never been ill enough to need any type of medication. The only time she’s had Calpol is the first time she dislocated her elbow.

Like a punch to the stomach

me and kids
You do what you can to protect them

Anyway, he attempted to take Ollie’s hand but she was petrified. He did eventually manage to get it and within seconds. He confirmed it was dislocated and he said it’s pretty safe to say that my beautiful daughter has EDS. She has inherited my faulty genes. It was like a punch to the stomach.

We knew this since pregnancy but every time I hear a doctor say it again, the guilt gets to me. Ollie is not officially diagnosed with EDS. We hope to rectify that soon just in case social services do get involved during a future trip to A&E.

Like nothing ever happened

Within forty minutes of arriving at A&E we were out the door. Ollie was back to her old self again and I’m pretty sure she was on a sugar buzz after that medicine. She kept talking about how the doctor fixed her and that she was all better now. We arrived home and the three of us sat on the couch to unwind after a stressful couple of hours.

Ollie climbed on me and fed until she was ready for sleep. She then sat up and threw herself on to the couch. I watched her sleep for awhile. She looked so peaceful and you’d have never had known she was in agony just an hour before. We carried her into her new room and didn’t see her till morning. It really is amazing how resilient kids are and that does make it a lot easier to live with a condition like EDS.

Ollie after hospital
Like nothing happened

I know I cannot control my genetics and that I shouldn’t blame myself for Bendy Boy’s diagnosis and Ollie’s inevitable diagnosis. But, I can’t help it; this illness comes from me. If Ollie is dislocating this early on in life it doesn’t bare thinking what will happen, as she gets older.

What does the future hold?

When she starts playschool, when she’s old enough to play outside with friends, when she climbs a tree for the first time. Then there’s puberty. The majority of girls with EDS experience an increase in symptoms when they reach puberty. This is because the hormone, progesterone wreaks havoc on our bodies. Progesterone makes us lax. It’s why girls and women suffer more during their periods and in pregnancy.

How many more times is she going to be in hospital with an injury? Is she ever going to work or have a normal life? These questions whiz around my head. I try to say to myself what I would say to anybody in this situation; cross that bridge when you come to it.

Overcoming the guilt of faulty genes

But, I will eventually overcome this guilt. How? Because I know I am the best person to get my children through what they will face later down the line. I know what they need, who they need to see and where I can take them to make all this happen. The fight for access for appropriate medical care of which there is none in this country will be my biggest challenge. I will take them to the doctor or hospital as many times as they need and I will do it with empathy.

They will be believed when they tell me they are in pain, because I know what it’s like not to be believed. Not being believed by my parents, by friends and by doctors affected me greatly and I still carry that pain around with me. That pain can be just as great as the physical pain my genes have caused me. An old friend once said that she would rather face a pack of rabid Rottweiler than a parent who wants to protect and fight for their children. If you mess with my kids and their health, I’ll go through you for a shortcut.

Be your child’s champion

The Fault in our genes

Having EDS myself makes me the best advocate for my children. Any patient with a rare disease becomes his or her own expert. I will now be the expert for my children too. From how their genes work to the treatment they need, I will be their champion.

It is a great comfort knowing that they will always have each other to lean on for support. Even when I am not there anymore to fight for them, they can fight together.

So, for anyone out there who is feeling guilty for passing on their crappy genes, know this; it is not your fault. I know more than anybody that it’s hard not to. Take a leaf out of my book; take that guilt and turn it into something positive. Raise awareness of the condition, fight for proper treatment, do everything in your power to make your child’s experience with their condition better than what you experienced.

Until next time,

Z.M

x

 

 

Friday Feelings with Irish Dysautonomia Awareness

Hey there, hi there, ho there!

This week I spoke to Lette from Irish Dysautonomia Awareness. Lette suffers from Hypermobile Ehlers Danlos Syndrome (hEDS) , Postural Orthostatic Tachycardia Syndrome (POTS) , Sphincter of Oddi Dysfunction (SOD), Neurogenic Bladder Dysfunction and Gut Dysmotility, to name but a few of her conditions. You can find Lette on Twitter, Facebook and Instagram.

Lette
Lette and her baby, Boo.

Hi I’m Lette. When I’m am able for it I love to play retro video games, photography, drawing, craft, listen to music. I like to internet hop and watch shows like Game of Thrones, The Walking Dead, The Expanse and Black Sails with my wonderful husband and our little dog Boo.

So now we know a little about Lette, let’s have a read of her Friday Feelings entry.

giphy

“Dear Diary…

It’s another Friday, they have begun to all feel the same these days, days melting into weeks, melting into months that float by me at high speed and I still seem to be stuck here in my bed, in a dark room, feeling putrid!

Motivation seems to have upped and all but disappeared. I think of all the things I have achieved throughout my life before I got very sick and everything went downhill in 2011. I got my art degree, my Masters of science, worked as a fitness instructor, (can you imagine?) as a wedding and events photographer and videographer, as a teacher in adult education and as a lecturer in third level. That was just education and work, when I had the proper use of my legs and body, my husband and I used to just love going hiking through the wild woods and lakes of Killarney with the dog and cameras in toe, I loved to drive and cycle and swim and walk aimlessly through fields for hours with the camera just because I could and I felt immense joy in looking back at and sometimes editing the photos and the memories I had captured while out.

I used to love drawing, animals especially and now it has been so long since I lost myself in any art. I forget what it’s like and I miss it but the energy is never there in recent times for me to act on that longing.

I don’t do any of these things anymore, I find I am spending more and more time in bed as I am just not capable, the majority of the time, of being upright. Either I am in severe pain with my gut issues or severe pain in my hips and shoulder joints, or the worst pain at the moment is coming from the back of my head / base of my skull / top of my neck pain which causes white blinding headaches where I can do nothing but lie in a dark room and moan. No phone, no laptop, no reading, no entertainment. Just darkness and constant pain and nausea or POTS issues where my blood pressure is so low I can hardly turn over in the bed. It wears you down.

The only time I get out these days is not to visit friends or family like I used to regularly do, but instead to go to hospital and consultant appointments and even then I have to reschedule many because I am too ill to go!

I’m getting gloomy but I don’t mean to be, because something different happened yesterday. I had to update the house insurance! What? Bear with me! Honestly, it gave me a sense of purpose, for all of those 15 or so minutes I had something, relatively important, to do and it felt good!

This morning I helped make the breakfast with the husband, put laundry washing on, picked up the Nintendo DS for the first time in ages and played Earthbound and I even had a shower. This may sound utterly silly, but to me, these are huge achievements! The shower is a funny one, I actually have to way up my energy for the day against the effort of a shower and believe me, I may not have the energy for days. It can get a tad funkay in fairness!

So while many friends of mine will be going out on the town later tonight or this weekend and I know a few others who are jetting off on a few days holidays in Europe, all I can achieve is having a freshly washed dressing gown, a nice shower, fresh fluffy socks and a hot cup of tea! Where once I would have drowned my sorrows in that cup of tea, tonight I am smiling because I know its ‘the little things’ that should and do count the most.

I have so much to be happy for. My wonderful husband, our amazing dog, my loving family and friends, the generosity of strangers who have helped with my medical fund, a relatively successful blog and related social media links, my talents have gotten rusty but I can get them back if I just try even one new thing every day.

Anyone can achieve anything if they just try and thats alright with me!”

A big thank you to Lette for taking part in our Friday Feelings blog.

Do you relate to Lette’s entry? Do you find joy in achieving what most people would take for granted in being able to do? Comment below and let us know what you thought of Lette’s entry.

Want to write your own Friday Feeling entry?

Send

A high res photo

A short paragraph about yourself

What illnesses you have

Your diary entry with the following topics in it:

It’s Friday, many people will go out tonight for a few sociable drinks with their friends. What do you do on a typical Friday night?
How are you feeling at this moment about your chronic illness?
How do you feel about the future in regards to your illness?
How do you feel about the way people view your illness?

and links to your blog and social media to evienevin87@yahoo.ie

Be sure to put “Friday Feelings” in the subject bar.

So until Sunday

Z.M

x

 

 

A Simple Guide to The Ehlers Danlos Syndromes

UPDATE: On March 15 2017, criteria and classifications of The Ehlers Danlos Syndromes were updated for the first time in 20 years. In light of this, I will update my guide (with the new information made available) to highlight new diagnostic criteria and classifications. You can read more about the changes here.

Because there are now 13 types of EDS, I have only covered Hypermobile Ehlers Danlos Syndrome (hEDS), Vascular Ehlers Danlos Syndrome (vEDS) and Classical Ehlers Danlos Syndrome (cEDS). If you would like me to do another guide to the rarer types, please comment below or email me. I would be more than happy to oblige!

“You’re suffering from Fibromyalgia!” “You’re depressed!” “You’re imagining it!”

“You’re malingering!” “You’re attention seeking!-”

“No I’m not – I have an Ehlers Danlos Syndrome!”

 The Ehlers Danlos Syndromes (EDS) are a group of conditions that are poorly understood, even by many in the medical professions. It is essentially a defect in the production of collagen, an essential component of connective tissue.

Many articles about EDS contain medical terminology that can be difficult to understand. The purpose of this guide is to put the medical terminology in plain language and help non-affected family and friends understand exactly how EDS affects people and their day-to-day lives. The medical terminology is included in italics. Links to web pages are included throughout the article if you want to conduct your own research.

Why are they called The Ehlers Danlos Syndromes (EDS)?

The name of the condition itself is quite a mouthful! Ehlers Danlos Syndrome (Eylerz-Dan loss Sin-drome) is named after the two physicians, Dr Ehlers and Dr Danlos, who first described this group of connective tissue disorders.

What is EDS?

People with a type of EDS will produce faulty collagen. Collagen is essential for healthy connective tissue, which is found throughout the body supporting and connecting the different types of tissues and organs, including tendons, ligaments, blood vessels, internal organs, bones, the blood and skin.

Imagine a healthy person’s connective tissue as being like regular household glue. People with EDS have collagen that is more like chewing gum; stretchy and not very good at keeping things in place.

What causes EDS?

There are a number of different genes responsible for making collagen and connective tissue, so there are different types of EDS depending on which genes are faulty. There are 13 types of The Ehlers Danlos Syndromes

How did I get a faulty gene?

It is possible that the faulty gene may have been inherited from one parent, or both parents, or not inherited at all. It may be that the defect has occurred in that person for the first time. This happens in 25% of cases.

 How I explained it to my 7-year old son.

A carpenter makes a wooden chair. Instead of using wood glue to place the joints of the chair together, he uses chewing gum. Once finished, the chair looks fine. But, as time goes by and the chair is used, the chewing gum doesn’t work very well at keeping the joints together. Without proper glue the chair can begin to get wobbly. I went on to explain that with proper exercise he could help to strengthen his muscles so that they acted like binding around the joints to help support them.

What does EDS feel like?

Having an EDS feels different from person to person, depending on their type, but many describe it as having a lifelong flu. Have you ever had the flu? Do you remember how painful it was having those aches and pains in the joints and muscles? Do you remember how tired and run down you felt? That’s what it’s like for people with EDS only worse and it never goes away. In addition to the daily aches and pains people with EDS also have to deal with very painful headaches, gut issues and then of course there’s the issue of dislocation. Many EDSers can’t go a day without a joint popping out. It can happen simply by stepping off a footpath or picking up a pot when cooking. A lot of people with EDS are also affected by the weather. When it is damp or when the air pressure changes their pain can increase.

How does EDS affect people?

Because collagen is everywhere in the body, there are hundreds of ways EDS can affect people. Any two people with EDS may have very different signs and symptoms, this includes people with the same type. In som,e the condition is quite mild. For others it can be disabling. Some of the rare severe types can be life-threatening.

One of the problems with diagnosing EDS is that many diseases share the same symptoms. As a result, EDS can be easily confused with other conditions and it may be difficult for doctors to recognise. But there are ways to tell if someone may be affected by EDS and need more thorough investigation. Some of the investigations available are listed later.

The most common symptoms of EDS (hEDS and cEDS) are:

  • “Double jointed” – Hypermobility: joints that are more flexible than normal.
  • Loose, unstable joints that dislocate easily.
  • Clicking joints.
  • Joint and muscle pain

In addition there may be

  • Fatigue (extreme tiredness).
  • Injuring easily.
  • Fragile skin that bruises and tears easily. The skin may also be stretchy.
  • Digestive problems
  • Dizziness and an increased heart rate after standing up. (Postural Orthostatic Tachycardia Syndrome or simply POTS for short)
  • Incontinence of urine in women

Digestion.

If food in the stomach doesn’t move through the body to make its way out it may just sits in the intestines and can cause a feeling of fullness, nausea, vomiting, stomach pain, to name just a few symptoms. This condition is known as Gastroparesis. (gas-tro par-eesis).

Nervous System

Another condition than often affects people with EDS is a fault with that part of the nervous system controlling the “automatic” functions of the body; things like blood pressure, breathing, heartbeat, digestion, how hot or cold you feel and the way your organs work and so on. This is called the Autonomic Nervous System. When it doesn’t operate as it should the conditions is called Dysautonomia (Dis-auto-no-me-a). Common symptoms of this are trouble with digestion, dizziness and fainting.

Dysautonomia affecting the heart.

The most common type of Dysautonomia causes dizziness and an increased heart rate after standing up. This condition is called Postural Orthostatic Tachycardia Syndrome or simply, POTS for short.

Some sufferers have fairly mild symptoms and can continue with normal work, school, social and recreational activities. For others, symptoms may be so severe that normal life things like bathing, housework, eating, sitting upright, walking or standing can be very difficult. They may feel dizzy or even faint from doing these things.

What are the symptoms for POTS?

People with POTS experience fatigue (extreme tiredness), headaches, lightheadedness (feeling dizzy), heart palpitations (when their heart beats so hard you can hear and feel it), exercise intolerance (feel ill when exercising), nausea (feeling sick), diminished concentration (hard to concentrate), tremulousness (shaking), syncope (fainting), coldness or pain in the arms, legs, fingers and toes, chest pain and shortness of breath. People with POTS can develop a reddish purple colour in the legs when standing; this is believed to be caused by blood falling down in the body because of weak veins. The colour change subsides upon returning to sitting or lying position.

Can you tell someone has EDS just by looking at them?

The short answer is no. Some may have typically blue sclera (whites of the eyes), they may have translucent skin (see through) and you may even notice how bendy they are. But some people may have some of these things and not have EDS.

Many people with the type of EDS that affects blood vessels (Vascular Ehlers Danlos Syndrome or simply, vEDS) do have some facial characteristics. Notice in the picture below that the people have big eyes, thin nose and lips.

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Can EDS kill people?

Some people think it can’t but actually, EDS has led to the untimely death of people all over the world. vEDS is considered the most serious form of EDS due to the possibility of the heart or organs tearing.

Many EDSers live a life of constant pain. This pain and misunderstanding from their medical teams, families and friends can make a person feel very sad and alone which can lead to depression and even suicide.

What treatments are available for people with EDS?

Because EDS is considered “rare” there are not many doctors willing to learn about it. Types such as hEDS and cEDS can be somewhat managed through specialised physiotherapy. Joints with weak connective tissue are more likely to dislocate. Exercises to strengthen the muscles around a joint can help stabilize the joint. Your physical therapist might also recommend specific braces to help prevent joint dislocations. Occupational therapy is also useful to help manage everyday life. Pain relief is very important for people with EDS.

EDSers should also be under the care of a Rheumatologist (a doctor who looks after bones and joints), a Cardiologist (heart doctor). There may also be a need for more specialised doctors such as Neurologists (doctors who look after the nervous system) or all of the above plus many, many more. Sometimes operations are required to repair joints that have dislocated frequently and haven’t healed properly.

Do all people with EDS need wheelchairs?

Not everyone will experience EDS the same way, some people can live normal lives and manage very well with physiotherapy and pain relief. Others may need to use wheelchairs or walking sticks to help them get around. Some people with EDS also have Gastroparesis which we discussed earlier and may need to be fed using a tube. Others may only have mild tummy problems. Some people with EDS may have to go to hospital a lot while some may only go to their GP every few months. But, just because one person can live their lives fairly normally, it doesn’t mean they don’t have EDS or that their pain shouldn’t be taken seriously.

Can you catch EDS, POTS or Gastroparesis?

No. EDS and other sub conditions are not contagious. If you know somebody with EDS, don’t be afraid, you’re not going to catch anything from them. So, if you’re avoiding someone with EDS, go make friends with them.

 How can I help someone with EDS?

Be there to listen if they want to talk about it. Some people are afraid to tell you how they feel because they think friends and family don’t want to hear them complain. Ask them how they are and if you can do anything to help them. Doing shopping or household chores can be a huge help and it would be most appreciated. If you’re friend or family member has EDS and can’t access appropriate treatment like here in Ireland, write to your local representatives to tell them about EDS and the lack of care that is available. Help raise awareness in the public by sharing articles or pictures about EDS. Experts believe that EDS is not rare, just rarely diagnosed.

I will update the Diagnostic Criteria for cEDS, hEDS and vEDS in the coming days.

*Special thanks to my Dad who helped me edit this guide.*

Do you think anything else about EDS needs to be explained? Let me know in the comments!

Z.M

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11 Crazy Things People With EDS Have Heard

I spoke with some fellow EDS zebras about some of the down right crazy things they have heard from health care professionals, friends and family about their condition. Comment below if you have anything you’d like to add to the list.

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1. You have EDS because you’re vaccine injured.

No. Just no. A vaccine isn’t going to alter my genes. Shoo! EDS is genetic. GEN-ETIC.

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2. You have EDS because you’re possessed.

Seriously. This came from a chap who works in my local takeaway. Offered to make me herbal blends to cleanse my soul. Thanks, but no thanks, mate. Stick to making pizza, k?

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3. You obviously have Lyme disease. That triggered your EDS.

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Yes, there are some overlaps with EDS and Lyme but the latter isn’t going to cause your collagen to magically turn into a chewing gum like consistency.

4. You have EDS because you’re stressed.

I was told the stress of my wedding caused my EDS. If that’s true then EDS must be far more common! We should all stay single. Job done.

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5. You’re husband is a lucky guy.

*insert pervy wink here* Shockingly, this came from a Doctor!

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This is the extend of my bedroom antics, Doc. Seriously, I’m more likely to pop out a hip than to climax.

6.You’re sick because you’re in a bad relationship

This was in the Doctor’s office and my husband was sitting right next to me. The only bad relationship here is with this Doctor.

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I mean, talk about awkward. If a Doctor was genuinely concerned about the patient, wouldn’t they wait until their patient was alone? Nobody is going to admit they are in a bad relationship in front of the person they are in a relationship with. Anyway, the point is martial issues are never going to cause a person to dislocate a joint.

7. You’re too young to be sick

Yes, because that’s how chronic illness works. You wonder if these health care professionals obtained their degrees from the bottom of a cereal box. Do you even science, bruh?

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I’m too young? Hold on a sec while I tell my body that I’m not actually 90 years old.

8. You’re too short to have EDS

I think you’re confusing my condition with Marfan Syndrome.

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9. A holy man once surrounded my hospital bed with his followers they started to chant and pray.

Well, that’s just creepy.

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Here, while your at it, could you pray for me to win the lottery so I can pay for my very expensive medical treatment? Oh it doesn’t work like that? Silly me.

10. Your son has EDS because you’re a bad parent.

Like, what the actual F?

The child’s mysterious problems are from his mother yelling at him and letting him get away with too much all at the same time. This was said by a paediatric consultant!

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11. Someone assumed because I was in a wheelchair that I was mentally affected.

I was seen in the wheelchair while being pushed by my husband and this old man saw me in the chair and automatically thought I had an intellectual disability. We had our dog with us and looked at me and said (in baby talk voice, no less) “is that your cat? Hah?! Is that your cat? What a lovely cat hah? HAH??!”

 I just looked at him smiled and said nicely “yeah funny looking cat, no?! The poor man looked shocked. He just said, “have a nice day” and skootled off quickly.

What do you do in a situation like that? Laugh? Cry? Both?

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Has any thing like this happened to you? Let me know in the comments!

Share this with your friends and family to help educate them.

Until next time,

ZM

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Our medical trip to London. Part 1

So, I’m sitting on a plane at Heathrow airport. As I stare out the window and listen to the rumblings of the engines preparing to take us back home, I reflect on the last few days.

I have been running on adrenaline, will power and strong cups of coffee to let my family enjoy the experience of everything London has to offer. I know they wouldn’t have gone sight seeing if they knew just how unwell I was. I can’t hide it now though. My pelvis has separated, which it does every few days or with exertion. My wrist popped out and is now painfully bruised. I am emotionally and physically drained.

We arrived in London on Tuesday evening. Weary after our drive from Cork to Dublin, I was looking forward to getting to our hotel in the Premier Inn Earl’s Court and hopping into the bath for a soak. Ollie Pops N’Clicks had other plans..

In addition to inheriting all my wonderful genetic gifts, she also inherited my inability to travel without some form of sickness cropping up. Yup. Right there on the packed tube, close to me in the sling she vomited. And I mean vomited. Like ‘Team America’ vomited. It just kept coming! How could someone so little bring up that much puke?

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The smell. Christ. Just what I needed. I look over at my husband only to see him laughing. Then everybody else in the tube noticed what happened and began to laugh too. Frickin’ hilarious, lads.

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We hopped off the tube so I could clean myself up as much as possible. We eventually made it to the hotel in one piece, just. Ravenous, we dropped off our bags, got washed up and went to the restaurant for a pleasant dinner.

I didn’t sleep so well that night. The next afternoon Bendy Boy and I would be meeting the Professor Grahame. I met him once at a conference in Cork. He was just as sweet and gentle as I had remembered. The Professor knows all too well the struggle Irish zebras face, almost total abandonment from our own Government and healthcare system. No specialists and the majority of tests needed are simply unavailable. We don’t even have an upright MRI machine.

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After an examination and a very long chat, the Professor confirmed Bendy Boy’s diagnosis of EDS Hypermobility Type. It was also noted that the six year old shows signs of Postural Orthostatic Tachycardia Syndrome. When Bendy Boy stands up, his heart rate rises and his feet pool with blood. I was shocked to learn of the POTS signs as he has never complained of feeling dizzy except when he gets out of the bath. I was surprised I didn’t notice the pooling.

The Professor seemed impressed with my knowledge and understanding of medical terminology. When there are no experts available to you, you have to become your own expert.

Here is an excerpt from my own medical report:

“On examination there is evidence of widespread joint laxity with a hypermobility score of 8/9 on the hypermobility scale. Outside the scale her shoulders and hips (borderline) are also hypermobile, as are her feet which flatten and pronate on weight bearing. There is a non-significant 2° scoliosis on the Bunnell scoliometer, but no other features of a marfanoid habitus. Her skin is soft and silky and semitransparent, and shows increased stretchiness in the phase of taking up slack. There are numerous thin scars from knee scrapes acquired in childhood and similar over her elbows. Striae atrophicae were first noted by her at the age of 18, and she has minimal striae gravidarum despite having had two full-term pregnancies, a pointer to EDS. Gorlin sign, ability to touch the nose with the tip of the tongue is positive, and the lingual frenulum is rudimentary, both pointers to EDS. She scored very highly (25/30) on our checklist of symptoms compatible with autonomic dysfunction, known to be a common feature of EDS. Her blood pressure lying was 124/84, pulse rate 66; standing 124/84, pulse rate 80. This rise of 14bpm on change of posture is suggestive of postural tachycardia syndrome (PoTS), the most frequently encountered form of dysautonomia seen in patients with EDS. The evident pooling of blood in her toes on standing is further evidence in favour of PoTS.

On the basis of the clinical findings I have formed the conclusion that Yvonne is suffering from a heritable disorder of connective tissue, the Ehlers-Danlos syndrome hypermobility type, a diagnosis that was established by Dr Mulcahy in 2013. I explained the nature of the condition to her, in particular its genetic basis and the vulnerability it confers on soft tissues to the effects of injury and overuse. In her case it has resulted in longstanding widespread joint and spinal pain. Since the time of her first pregnancy she has suffered a secondary chronic pain syndrome, a frequent occurrence in this situation. It is likely that her bowel symptoms represent an EDS-related intestinal dysmotility, and almost certainly she has PoTS.

There is a concern about the possibility that she might have craniocervical instability on the basis of left-sided weakness, headaches, and paraesthesia in her arms and legs. In addition she feels that her head feels too heavy for her neck. With this array of suggestive symptoms I have agreed that we should proceed to an upright MRI examination, and I will be requesting this at the Medserena Upright MRI Unit for her to have one on a future visit.”

And Bendy Boy’s report:

On examination there is evidence of widespread joint laxity with a hypermobility score of 8/9 on the hypermobility scale. Outside the scale his shoulders, cervical spine, hips, fingers and big toes are all hypermobile, as are his feet which flatten and pronate on weight bearing. There is a non-significant 3° scoliosis on the Bunnell scoliometer. Other features of a marfanoid habitus include a pectus excavatum, and hand-height and foot-height ratios both elevated to within the marfanoid range. I interpret these findings as indicating an incomplete marfanoid habitus, which may become more obvious as he completes his adolescent growth spurt. This should not be taken to imply that I feel he has the Marfan syndrome as the habitus is widely distributed throughout the family of heritable disorders of connective tissue. His skin is characteristically soft, silky and semitransparent, and shows increased stretchiness in the phase of taking up slack. There are no paper-thin scars of note. Gorlin sign, ability to touch the nose with the tip of the tongue, is negative. The lingual frenulum is present (normal). He scored moderately highly (12/30) on our checklist of symptoms compatible with autonomic dysfunction, known to be a common feature of EDS. His blood pressure lying was 96/53, pulse rate 75; standing 102/62, pulse rate 85. This rise of 10bpm on change of posture is suggestive of postural tachycardia syndrome (PoTS), the most frequently encountered form of dysautonomia seen in patients with EDS.

On the basis of the clinical findings I confirm that Alexander shares his mother’s phenotype and diagnosis.”

While I was being examined, Ollie Pop (16 months) decided to stand up on her own for the first time!  And I missed it. Thank You, EDS!

Receiving the confirmation of EDS HT and the noted symptoms of POTS given by Professor Grahame will hopefully bear weight in accessing services here in Ireland. Although, I won’t hold my breath. My GP was happy to hear that I took the plunge going to the UK and she’s very interested in my case. It took a long time to find a GP that genuinely cares. While a weight has been lifted knowing that I definitely have EDS and haven’t been misdiagnosed for the hundredth time, there is a fear. The idea of having cervical instability or Chiari freaks the sugar out of me. This last trip cost roughly 5,000 Euro. The next trip will be double that again. If Chiari is present and significant it may mean I will have to take a trip to the US to have surgery. We will just have to wait and see.

Coming home to Ireland, it is wet and windy. It’s miserable. The weather here reflects how I feel about Ireland and it’s healthcare system.

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Now that I’m home I don’t have access to the fantastic services and more importantly the compassion I felt in London. I felt so at ease.

I am fundraising to get back to the UK in the new year for further testing. I will give details of these in Part 2 along with the rest of my tale. If you can donate anything at all, just click on the link below. Even sharing our story would be a massive help.

https://www.gofundme.com/2befu24c

So, until next time,

ZM.

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Famous, fabulous and flexible

 

Exploring the world of hypermobile celebs.

Cherylee Houston

Corrie’s Cheryl Houston is probably one of the most famous people who suffers from Hypermobility Ehlers Danlos Syndrome. Cherylee has done fantastic work raising awareness about the condition through EDS UK. She is Coronation Street’s first full time disabled actress.

National Television Awards, The O2, London, Britain - 22 Jan 2014
Mandatory Credit: Photo by David Fisher/REX Shutterstock (3525294ld) Cherylee Houston National Television Awards, The O2, London, Britain – 22 Jan 2014

 

Gary Turner

Gary ‘Stretch’ Turner can stretch the skin of his stomach to a distended length of 15.8cm or 6.25in due to Ehlers-Danlos Syndrome.

He is even in the new book of Guinness World Records!

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guinness world records best bodies Garry Turner skin guinnessworldrecords.com https://www.facebook.com/GuinnessWorldRecords/timeline

Mylene Klass

UK Singer Myleene often shows off her hyper mobile elbows. She can even play the piano backwards!

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Kelly Osbourne

Various articles state that Kelly suffers from hypermobile hips that frequently pop in and out. Reports even suggest that the fashionista’s hips pop out unexpectedly causing her to fall over. During her stint in Dancing with the Stars she said: ”I’m double-jointed everywhere, I think that’s why I’m so accident prone. Tight jeans and high heels equals one of my hips popping out and my face on the floor. As a result of this curse, I can fall perfectly. I turn it into a dance move.” (Xposé.ie)

Ouch! By the sounds of it, Kelly suffers from a hypermobility syndrome.

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Shakira

The pint sized Columbian singer isn’t shy about showing off her tricks. She can pull her legs over her head which “really freaks people out”.

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A Few Honourable Mentions

It is believed although not proven that historical figures such as Abraham Lincoln and Anne Frank suffered from connective tissue disorder,Marfan Syndrome.

Abraham Lincoln was 6″4. The president’s lanky build, his long, thin face, and his enormous hands and feet, sparked the notion that Lincoln might have had Marfan Syndrome. Geneticists and historians have debated this idea since it was first proposed in the early 1960s.

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Anne Frank, the famous German diarist who hid in her attic during World War II is believed to have suffered from Ehlers Danlos or some other Connective Tissue Disorder such as Marfan Syndrome. When talking about P.E in her diary, she says:

I’m not allowed to take part because my shoulders and hips tend to get dislocated.

Anne’s facial features also suggested she may have suffered from EDS. Her large eyes, thin nose and lips are common features in EDS sufferers.

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There is a wide belief amongst medical professionals that both Elizabeth Taylor and The King of Pop, Michael Jackson both had EDS.

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Note how bendy the actress’ elbows are.

Dr Diana Driscoll explains in the video below the reasons she believes Liz Taylor had EDS.

Interestingly, Michael and Elizabeth were friends. It is known that Michael suffered from chronic pain and insomnia, both of which are common symptoms of EDS. In addition to his hypermobility, it is possible to assume the late singer battled with the syndrome. Watch below from 16:40. Professor Rodney Grahame, one of world’s leading expert explains why he believes Jackson had Ehlers Danlos Syndrome.

While we have mentioned syndromes such as Marfan and EDS, it is important to note that 10% of the population are hypermobile and will not suffer from pain or complications. Many people with hypermobility live perfectly normal lives, some even use their bendiness to their advantage by taking part in Ballet and Gymnastics.

Have you spotted any bendy celebs? Hit comment and let me know!

Until next time,

Z.M

 

 

 

You just can’t be sick

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Having any disability is difficult but for those who suffer from invisible conditions, it is a constant uphill battle. In addition to fighting their own conditions, they must also face discrimination and feel like they have to prove they are in fact, genuinely disabled.

As the name suggests, invisible disabilities are quite hard to detect, just by looking at someone. You can not tell if someone suffers from migraines, depression or diabetes just by looking at them. While you may have the best intentions, some of the following statements should never be said to someone with a chronic or invisible illness

“But you don’t look sick/But you look so well.”

While you may be trying to make the sufferer feel better, it can often come across as being accusing. Bear in mind that people with invisible illnesses probably hear this on a day-to-day basis. Not all illnesses are obvious and quite often the sufferer just puts on a brave face or you may have caught them on a good day.

“It could be worse, you could have cancer.”

Of course things could be worse, but if the sufferer has a chronic illness that doesn’t have a cure, they will be facing this condition for the rest of their lives and for some, it doesn’t get much worse than that. As for the cancer reference, just don’t..cancer goes one way or another, the person you are talking to may never be cured or won’t die as a result of a condition. Chronic illness means a life time of suffering.

“You should try this, it worked really well for my aunt, uncle, grandfather etc”

Oh this one really grinds my gears…
Again, you may mean well but unless you are a medical professional, or you also suffer from the condition, keep it to yourself. Anybody who suffers from a chronic or invisible condition wants to get better and have probably tried all treatments available to them. The Paleo diet isn’t going to fix faulty genes, or cure depression. And no, vaccines did not give me EDS!!!!

“It must be great not having to work”

My response is usually “😑”

Most people with chronic disabilities would do anything to live a normal life! Everyone wants to be independent and to have a good income to support their families. Being stuck at home all day can also effect a person’s mental state.

“You just need to exercise more”

Of course everyone should be doing some form of regular exercise. Physiotherapy and other exercises are hugely beneficial and important to maintain ones health but, going for a run or taking up a dance class can often make sufferers feel worse, especially if they have something like Autonomic Dysfunction.

“You are too young to be sick”

NEWSFLASH…
You don’t have to be elderly to be sick! You can become ill or stressed no matter what your age. Illness or disability isn’t age-dependent. Saying this to someone with an invisible condition can often make them feel self conscious about their inability to do normal, everyday tasks such as getting out of the house to get the groceries.

“It is all in your head”

Of all the things people with invisible conditions hear, this is undoubtedly the most dangerous. Sadly, not only is it heard from friends and family, sufferers can often hear it from their doctor. It is not uncommon for people suffering from physical disabilities to suffer from mental illness, and all because they were not believed.

But what can be the worst thing of all for someone with an invisible disability is for them to hear nothing at all. Someone who comes across as being totally disinterested, ignores the subject or just nods can be the most hurtful of all.

Things you should say to someone with an invisible or chronic condition.

“I believe you”

This can often be the nicest possible thing someone with an invisible condition will hear. Too often, sufferers will spend years battling with health care professionals to find an answer. When they finally hear “I believe you,” a huge weight will lift from their shoulders.

“I looked up your condition online”

Someone who takes the time to learn about a condition is very much appreciated amongst those with disabilities.

“How can I help?”

Taking a person shopping, for a cup of coffee or bringing them to their appointments can make all the difference. Sometimes someone with a chronic condition doesn’t leave the house for a long time, or misses a lot of school or work.

Adding to the difficultly of their illness is the feeling of being forgotten or left behind. Even if you can’t take time out of your day, a text or a phone call letting them know you are thinking of them may be a small act for you, but a big gesture for the recipient.

“I’m here”

Two very powerful words but, don’t say it unless you mean it.

I hope people who hear these things on a daily basis won’t feel so alone. Sadly, we will face ignorance in our lives. We will come across some moron who harasses you because you have a disability badge on your car. It’s inevitable. Chin up. We may be ‘invisible’ but we still have our voices to educate and create awareness.

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To all the people out there who are skeptical of one’s illness, remember this; never judge a book by its cover. As cheesy as it sounds, it’s true.

So until next time,

Take care of you

Z.M

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