Tag Archives: invisible illness

To the Doctors That Failed Me and to the Ones That Saved Me

Dear Doctors,

I came to you as a scared, vulnerable teenager. I was in pain and tired all the damn time.

“You’re depressed”, you said.

I walked out with a script for antidepressants. I hoped this would fix everything.

No such luck. I am a zombie. I didn’t care about anything. My friends are scared for me.

Months later I return with the same complaint. My joints hurt. I’m still tired. A new symptom arose. Chest pain.

“You’re stressed”, you said.

“I don’t feel stressed”, I responded.

“Subconscious stress,” you said.

I walk out with another script for a different antidepressant and sleeping pills.

This goes on for years.

It’s all in my head, you said. That the “physical symptoms were a manifestation of something psychological”.

Those words made me genuinely depressed. I wasn’t being listened to. The weight piled on, intensifying my depression. I didn’t feel like this body was mine.

You didn’t listen.

I became pregnant and things escalated.

“It’s just the pregnancy”, you said.

I moved clinics to find a doctor who would really listen to me.

Once again, I explain the pain, the fatigue, the stomach issues, the dizziness, my heart racing and pounding in my chest.

I came to you as a scared, vulnerable mother. I was in pain and tired all the damn time.

You’re depressed”, you said.

I walk out with yet another script for another antidepressant. The fifth medication of its type that I’ve tried.

I am in too much pain and too tired to function. I can’t muster the energy to get dressed. My friends and family don’t understand. Being judged for being in my pajamas all day. I am just lazy.

I think:

“If this is all in my head, and nothing is working, what is the point in living?”

There were days I looked at my pills and thought that if I took them all, that the pain would end, that I would be free and I would no longer be a burden on my family.

I fight the urge and win.

Three years later, while just about managing an internship, I interview a woman with Ehlers Danlos Syndrome. Her story sticks with me. The doctors didn’t believe her either. Nor were they willing to help.

A year later I speak to this woman again. We get to talking about my issues.

She asks one thing that changed my life forever.

“Are you hypermobile?”, she asks.

“No”, I say.

“I’m stiff as a board!”, I exclaim.

Turns out I am. Very hypermobile. I score 8/9 on the Beighton scale.

The woman gives me the same of a doctor to see. I decided to see what you, my doctors thought.

“Could it be Ehlers Danlos Syndrome?”, I ask.

“Oh God, no! That’s as rare as hen’s teeth,” you say.

I leave, defeated.

One November day, I faint at home. That’s it. I need answers.

I go to see the recommended doctor. My stomach is in knots. That’s normal before I go and see doctors of any type now. I prepare myself to be told the same old thing. That I was depressed, I was anxious, that it was all in my head.

I am examined, I am spoken to with respect, I do not feel like a neurotic child.

“No wonder you have been depressed. Nobody was listening to you”, he says.

Just as I thought; I was diagnosed with Ehlers Danlos Syndrome.

For the first time in my life, a doctor really listened, like no other doctors had done before.

Tears stream down my freckled cheeks with relief.

I walk out, cigarette in my hand, shaking with relief and with disbelief.

Finally! I was listened to. Finally, I have my answers.

A letter is sent to you, confirming my suspicions.

Nothing changes though, I suspect you don’t believe the diagnosis.

I never took another antidepressant after that day.

It was all over, or so I thought.

Then I soon realised, the diagnosis meant nothing without someone to help.

And here I am, six years later. I am bouncing from consultant to consultant. Medicated up to my eyeballs. No real investigations are done and some tests are simply not available in my own country.

Doctors often tell patients it is all in their head. Telling someone this can be as lethal as a bullet.

To England, I go with family in tow. My two children now facing the same life of disbelief and pain.

But things are different here.

I meet you, dear doctor, for the first time.

You are small and sweet. You’re gentle and kind.

I feel safe with you. You are thorough.

I had no choice but to travel and spend money we did not have, but I am glad I did.

You really listened and didn’t brush me or my feelings aside.

So many from my country have been here before. Desperate for help.

A world expert’s diagnosis, that will shut the rest of them up.

And it did. No more questioning on whether this was the real diagnosis.

I had wondered myself if the diagnosis was correct because all the others, these “experts” made me feel that way.

I return home. The rain pours as we land. It matches my mood.

I am coming back to a country that does not care about my well-being or my children’s.

I jump to another doctor after another again. And again, questions the diagnosis. I am so sick of doctors at this point. But, this next one is different.

You really seem to care.

There is no rush, you have taken the time to listen.

You follow my lead, you let me take the reins on my treatment.

I almost jumped for joy leaving the doctor’s office. I could not believe my luck.

You seemed determined to help.

My pain worsens. I am a ball of tears every time I see you now because I am at the end of my tether. Other doctors want to try these expensive treatments that may not work. They haven’t worked before. I just want relief from the pain.

I just wanted you to tell me you’ll help.

Yet I walk out with a script for antidepressants-again.

The memories flood back, of not being believed. I am now a nervous wreck going to any doctor again.

I take the first pill. It begins again.

I can’t get out of bed, I am more tired than ever.

Zombified again.

Sleeping for three days after taking one of those tiny pills so I don’t take anymore.

I return to you, scared because the pain is as bad as it’s ever been.

Feeling like the tin man, I just need some oil to move with ease.

“Anti-inflammatories will help”, you say.

I take the script, skeptical.

It’s still early days but I just know this isn’t going to work.

Something is very wrong with me.

I can’t keep fighting for help, doctor. I am already too tired.

Is it so much to ask to just want to be normal? To be like my friends.

There is only so much I can do on my own.

I am trying, really, I am to be normal.

Distracting myself with things that I can do.

I just want help with the things I can’t manage alone.

Is not living in pain too much to ask for?

Sincerely,

Someone who just needs help.

 

 

 

 

 

 

 

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Internet Activism can Change the World

Somebody once told me I could run the world with my laptop and an internet connection.

Most people use the internet for mundane things like social media, checking out movie times, bus times, reading “list” articles etc. People often think they couldn’t live without the internet or rather, social media. We have forgotten what we did before the world-wide-web became a staple in people’s lives.

People with chronic illnesses and disabilities see the internet as more than just a way to settle a debate between friends about which actress played a part in some film or to keep up with the Kardashians on their Instagram stories.

[pullquote]The internet has allowed those of us who have been trapped in our homes by physical illness and also for those of us with crippling social anxiety to remain a part of society. We can get involved, we can change the world with just a few clicks on the computer.[/pullquote]

This is where my path to activism started. The internet allowed me to learn from people across the world on how to change things for the better, it allowed me to get involved in social justice issues. I learned that I was far from alone in the way I lived. Trapped at home most of the time because of my illness. I am not reliable enough for a full-time job and set hours. If I could work from home, at my own pace without set hours, I’d be sorted. Those jobs are far and few between.

So, with no job, the inability to leave the house whenever I liked, the internet became my home and allowed me to fill my time and feel useful.

It’s been so long since I wrote my blog on why I am pro-choice. So there is a lot to fill you in on. I’ll try to be as brief as possible!

Repeal

So with a date announced to hold a referendum on whether Ireland should repeal the Eighth Amendment, I set up Disabled People Together for Yes. We called to remove the archaic law that prevented abortion except in cases where the pregnant person’s life is under ‘a real and substantial risk.’ It meant that you couldn’t have an abortion unless you were on death’s door. Even if you were a victim of rape, incest or the foetus had a fatal abnormality.

I traveled all over Ireland attending public meetings spreading the message of how people with disabilities were disproportionately affected by the Eighth Amendment. I explained my own story of pregnancy with Ollie Pop and what would happen should my contraception fail.

bodily autonomy pic
Strike 4 Repeal protest Credit Siobhan Venables

I am very proud to say I was actively changing people’s minds. Total strangers approached me to tell me that they hadn’t considered how people with disabilities would be affected by the lack of abortion services. It made the complete exhaustion, excruciating pain and time away from my family totally worth it.

Right before referendum day, I flew to Manchester for REDS4VEDS day. That was the first time I had ever taken a plane alone in my 31 years and something I thought I’d never be able to do. Taking multiple buses and trains alone around Ireland prepared me for the journey.

The beauty of the internet was that in the eight months I was campaigning, I never took a day off and yet, I was making a difference. I scheduled my speeches carefully so that I wouldn’t spend any more than two days of the week traveling. When I got home, I crashed, in pain and emotionally drained. But, I still opened up the laptop to create content, share stories that were sent to me and arrange the next public outing.

My first speech was at the International Women’s Day March in Cork city.

My last speech was at the launch of Disabled Women Ireland.

I went on a few TV shows discussing the referendum, and um…let’s just say my face went a tad viral on Twitter:

The internet is forever
The Zebra Mom at the Pat Kenny Show

I did so many things in between like writing and filming my poem “Bring Compassion Home”. Looking back on it now, I was actually so busy. I don’t know how I did it. Compassion and fighting for something you genuinely care about really can give you energy and drive that you never knew you had.

Voting Day was May 25 and that night the exit polls showed we won by a landslide. On May 26, it was confirmed. Ireland voted yes to the 36th Amendment to the constitution. The 8th was gone and nobody would have to travel for abortion anymore. In reality, that wasn’t the case, of course, there were those who were not happy with the result and went to the High Courts to contest the result. Purely a delay tactic, in my opinion. Until these court cases are put to bed, our President can not sign off on removing our 8th Amendment.

The Government has now told us it will be January before legislation will be enacted. [pullquote]That means over 2,000 women will still have to travel or order pills online and take their lives into their hands.[/pullquote]

We had hoped that we would never have to march for this cause again but unfortunately, we will be marching on September 29th. I am delighted to say that I have been invited on to the stage to speak. Last year there were 30,000 people marching so it is nerve-wracking but I am also super excited for it all!

So, what else have I been up to?

Well, I spoke at Galway University at their disability law summer school which I was really nervous doing (and it was super obvious) but after a few minutes, I managed OK.

Now? I am actually running in next year’s local election for a seat on the county council!

The internet allows us to make real change
Social Democrats Candidate, Evie Nevin.

There is nobody in our Government that truly represents people with disabilities.[pullquote] We don’t have many women in Government nevermind any women with disabilities![/pullquote]

I’ve also started taking driving lessons with a great instructor who specialises in helping people with disabilities. This is a huge deal for me because I had a real fear of getting back on the road. But, I’ve taken the same approach with everything else this year and just, well, did it. I was most nervous about city driving so I started my lessons in the city. Go big or go home and all that jazz.

So it’s been a really hectic year so far and it all started with a new year’s resolution to not say no to opportunities because it was scary. Scary or not, it has been one of the best years of my life. I got to visit new places and meet the most amazing people including one of my favourite authors, Louise O’Neill.

The internet allows us to make connections and make friends
The Zebra Mom with author, Louise O’Neill.

I was offered so many additional opportunities. I know if I had said no to that initial speech on International Women’s Day, I wouldn’t be in the position I am in today. There have been so many things before that I had the opportunity to do but fear stood in the way.

In addition to my own political campaign, I am now getting involved in helping the people of Northern Ireland get the same reproductive rights as we achieved. There is so much more I want to achieve and get involved in!

So moral of the story is that we can change the world within the confines of our homes and that when you say yes to things (despite it being really scary), wonderful, wonderful things can happen. There is nothing worse than wishing you had taken the chance on yourself. You just never know where it can lead you and what doors can open as a result.

What is your passion? Is there a cause you feel very strongly about? Let me know in the comments below!

Z.M

 

 

 

 

 

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Friday Feelings with My EDS Journey

Hey there, hi there, ho there!

This week I spoke to Emma from My EDS Journey. For a number of years Emma worked for a local charity helping people with disabilities but she has had to cut the number of hours that she can work dramatically as her condition, Ehlers Danlos Syndrome, has become unstable.

You can find Emma on Twitter, Facebook and Pinterest.

Miss clicky

“Hi everyone, my name is Emma I am 40 and I live in a very nice area of the south east of England. I suffer from hypermobile Ehlers Danlos Syndrome (hEDS).  This affects me in a number of ways, but mainly mobility, gastric, autonomic and pain are my problem areas.

My biggest passion is singing and I absolutely love musical theatre but unfortunately at the moment due to my current condition singing lessons and theatre visits are on hold! I took up blogging about 6 months ago as an outlet to communicate with others in a similar position to me and so we can share our knowledge and experiences living with a chronic condition. You can find my blog at http://edsjour.blogspot.com/edsjour.blogspot.com

Now that we know a little a about Emma, let’s look at her Friday Feelings entry:

giphy

Dear Diary,

Today is Friday, with most people I expect looking forward to a busy and varied weekend and perhaps socialising or spending time with friends and family.  For me however, this evening will be the same as any other, curled up watching TV or listening to music while trying to get comfortable.

My energy levels are currently very low and I am going through a bad period with my EDS, I wonder what my next problem will be as something new is always cropping up!

I like to take each day as it comes and not think too far ahead as my health is unpredictable and thinking about the future is scary and uncertain.

Due to the nature of EDS and it mainly being invisible to others, a lot of people don’t understand how it affects us, they may say “you are looking better today” or “ you need to keep up your exercises” as though these words are a magical cure.

I only wish they could see what is going on in the inside and then they would understand the phrase “make our invisible visible”.

A big thank you to Emma for taking part in Friday Feelings and being so open with us. Can you relate to Emma and her feelings of uncertainty about the future? Let us know in the comments below!

Want to write your own Friday Feelings 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 hello@thezebramom.com

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

Until Sunday,

 

Z.M

 

x

 

 

Thank You, Chester.

This week has been really tough for me.

On Thursday night I heard the news and broke down. A friend or a family member didn’t die. One of my saviours did.

Many moons ago, I was an angry teenager. I was angry at myself and at the world. As an adopted person, you ask so many questions. Why me? Why wasn’t I good enough to keep? In addition to the pain of abandonment, I always felt different. Something was never quite right. I couldn’t do things other people could. My frustrations came out as anger.

I felt alone and out of place, no matter who I was with.

At 16 I was on a path of self destruction, everyone was out to get me, or so I believed. The world was a crappy place and I was just surviving in it. I felt no one really cared and ignored the pain I was going through. Maybe they just didn’t see it. I don’t know.

I am not a creative person, I am not spectacular in anyway, I’m not talented at many things. I couldn’t throw myself into something to escape the pain.

I cut myself, I drank and I did things that were not good for me. Why wasn’t life as easy for me as it was for others, I thought to myself.

In 2000, I was just 13 years old. I was into all kinds of music. Nothing really spoke to me yet. That’s when I fell in love with rock and metal. Hybrid Theory was nothing I had ever heard. I began listening to Metallica, Smashing Pumpkins, Nirvana. I had been previously exposed to their music as a child but now, I appreciated it. Your music led me to some of those most amazing music that has ever graced the world.

But three years later when my pain was increasing (both physically and mentally), Linkin Park was the band I turned to. Hybrid Theory has been one of my all time favourite albums but it was Meteora that sang to me. In particular the songs ‘Somewhere I belong’ and ‘Numb’.

“I wanna feel what I’ve wanted all along, somewhere I belong.”

It’s as though you felt all the things I felt. For the first time in my life, someone was saying all the things I didn’t have the ability to put into words.

That song was on a loop, at full volume for months on end.

When I felt like dying, it was your music that calmed me. You were one of the reasons for pulling me out of that state. Seeing you play in the RDS while supporting Metallica was one of best days of my life. So not only did your music save me, you gave me great memories.

Now? Yeah, I still feel different, unspectacular and angry at the world but now I know that no matter what, music will always be there to pull me back as well the people who get me. I wouldn’t have known that if it was for your voice.

Even now, when my mental health is suffering, I know that even though you’re gone, you’ll still be there to sing what I’m feeling. Right now ‘Heavy’ is my go to song. I can’t help but cry when I listen to it, knowing how things ended.

So thank you Chester for giving us 17 years of your voice. Thank you for making us feel less alone. Thank you for putting into words the things I’ve always thought but couldn’t say. Thank you for creating music that speaks to millions of people who have felt the way I have felt. I have seen posts and talked to many people who were going through terrible times as teenagers. Even in the same school, none of us knew we were all going through stuff and all had the same thoughts and feelings. It just goes to show, you never know what goes on in people’s heads-even if you are in the same room.

I hope, wherever you are, you are at peace. Thank You again, for pulling me back. Your legacy will continue and I hope one day, my own children will find solace in your music when they’re feeling low, if they should feel unable to speak their minds aloud.

Forever Grateful,

Z.M

x

 

 

Is gender bias affecting women’s medical treatment? The Zebra Mom investigates.

Hey there, hi there, ho there!

So for awhile now I’ve been thinking about writing this piece as I’ve heard a lot of anecdotes about sexism and gender bias in medicine. I know myself that I’ve experienced some sexism in my time as a regular visitor to the GP and hospital.

The definition of bias: inclination or prejudice for or against one person or group, especially in a way considered to be unfair.

“When we talk about gender bias in medicine we usually either mean an unintended, but systematic neglect of either women or men, stereotyped preconceptions about the health, behavior, experiences, needs, wishes and so on, of men and women, or neglect of gender issues relevant to the topic of interest.”-Gender Bias in Medicine; Katarina Hamberg

I think the experience of sexism and gender bias that stands out to me the most, personally, is the time I went to my GP explaining I had zero libido, that it was borderline painful to have sex and that it was affecting my relationships.

The GP (who by the way was a woman) told me to just do itthat the more sex I had, the more I would want it.  Now I don’t know if I am off the mark here but I’m sure if a man went to his GP and told them that they had no libido or that it hurt to have sex that they wouldn’t be told to “just do it”.

Now, I’m not a doctor but I think I if I was, that I would at least do some blood work and if nothing showed up, refer the patient on to a Gynaecologist/Urologist for further investigation. Or you know, have a look down there to see if anything obvious stands out!

So, I wondered if there was solid, scientific evidence to suggest whether gender bias actually exists in the medical field. I have been told hundreds of stories over the years as a health journalist about women being fobbed off. Sadly, this treatment has cost women their lives.

I recently spoke at a conference in Manchester and while I was there I spoke to a GP who also suffers from hypermobile Ehlers Danlos Syndrome. When I brought the subject up of whether women’s pain is taken as seriously as men’s; she responded: “Absolutely. It’s a feminist issue, for sure.”

Of course, we can’t go on anecdotal evidence. To prove something actually happens we must look at it from a scientific point of view. I contacted the amazing Gill Roddie (follow her on Snapchat: gemeroodles) to ask her for solid articles about this issue. Gill teaches Biology in third level and is a wealth of knowledge when it comes to science. Her science snaps are definitely worth the watch, so do check her out.

Does the research show that women’s pain isn’t taken as seriously as men’s? Yes, it does.

gender bias in medicine

It’s a disturbing thought, but there is a plethora of mounting evidence to back up these anecdotes. Women’s pain is taken much less seriously by doctors than men’s, fact.

This gender bias has a number of serious implications; including that women in acute and chronic pain are left to suffer for longer in hospitals. Women are more likely to be misdiagnosed with mental health problems because women are emotional” even when clinical results show their pain is very real.

Research has found that when women and men present in A&E with the same severity of abdominal pain, men wait an average of 49 minutes before being treated, while the average wait for women is 65 minutes. Similarly, women are consistently prescribed less pain-relieving medication, even when controls for weight are applied.

One reason for this blatant display of sexism may be that doctors often perceive women are being more irrational or emotional than men, and therefore see their complaints about pain as being ‘all in their head’ rather than having a physical basis.

Clinical studies have also found that doctors are more likely to think women’s pain is caused by emotional issues rather than physical causes, even in the presence of clinical tests which show their pain is real. Researchers J.Crook and E.Tunks found in their study ‘Women With Pain’ that women with chronic pain conditions are more likely to be wrongly diagnosed with mental health conditions than men and often prescribed psychotropic drugs, as doctors regularly dismiss symptoms as being a part of a mental illness.

I myself can back this up, again with anecdotal evidence. When I first went to my GP about my symptoms of pain and fatigue, I was told that I was depressed. Another GP told me my chest pains were caused by stress. I told him I wasn’t stressed at all and he said “Oh, well it must be subconscious stress.” Again, no investigations, just a script for Lexapro. We now know that my pain and fatigue symptoms were a result of my Ehlers Danlos Syndrome and the chest pain is either a subluxated rib or costrochronditis.

But this assumption also does no favours for the male population either. Men are seen as more rational and when they say they are feeling acute pain, doctors take their symptoms seriously as having physical cause rather than assuming an emotional basis. But what if it is emotional?

A 1990 study by Karen Calderone from Rhode Island University indicated that women are more likely to be given sedatives for pain, while men are given pain medication.

This indicates that women are perceived as being more ‘anxious’ than truly in pain.  This research suggests that doctors focus on returning women to a ‘calm and rational’ state rather than actually relieving their pain.

This means women are often left in severe pain for longer periods than men. Sedatives can make women appear calmer but all the while continuing to feel pain acutely. This means they stay in extreme discomfort for longer periods and this can lead to serious symptoms. Conditions may go unnoticed and undiagnosed through this type of medical treatment (or lack their of).

In Hamberg’s paper she noted that in a large variety of conditions, such as coronary artery disease, Parkinson’s disease, irritable bowel syndrome, neck pain, and knee joint arthrosis, men are investigated and treated more extensively than women with the same severity of symptoms.

Personally the most disturbing thing I’ve read during my research for this article is learning that the more attractive a health care professional found their patient, the less treatment they received. This confirms what most patients with invisible conditions say, that their pain isn’t taken as seriously because we appear healthy.

In the research paper ‘Beautiful Faces in Pain’ it was found that due to this “beautiful is healthy” stereotype, doctors assume people who look ‘better’ on the outside, are healthier and subsequently require less treatment. Since sexism and patriarchy is present when it comes to hierarchy in hospital settings, men are more than likely to have senior positions. They are responsible for decision making and since the majority of men are heterosexual, it seems quite possible that women’s pain is underestimated due to the perceived attractiveness by the males responsible for their treatment.

While I’m sure most health care professionals will say that they treat each patient with the same level of care, regardless of their gender, the facts and figures say differently.

You can not deny the solid, scientific facts that show that gender bias is very real in medicine.

Sexism is seen in A&E waiting rooms and hospital wards. Gender bias and sexism is present in almost every area of society, so why would medicine be any different?

Gender bias is literally physically hurting women as well as emotionally. Imagine if those chest pains I was suffering from was something more sinister? What if it was my heart giving me a warning sign? What if I ended up in cardiac arrest? I may be presenting you with hypothetical situations here but, for many women, this has happened and sadly, it has cost them their lives. Until gender bias and sexism is rectified in medicine, women will continue to face difficulty in accessing appropriate treatment.

Until next time,

Z.M

x

Disability and Social Media

Hey there, hi there, ho there!

Sorry for the radio silence, I had been in London again for tests and treatments and then I had some pretty bad issues with my neck. After almost two weeks and muscle relaxers, it’s finally under control. Interestingly, the muscle relaxers seemed to help my general widespread pain. I do have chronic tendinitis pretty much all over my body so obviously muscle relaxers would be helpful. Unfortunately my GP won’t allow me to have them long term in case I start sublimating and dislocating more often. Anyway, I’ll update you with London in next week’s post but I really wanted to get something off my chest this week.

How many of you out there have had people accuse you of faking your illness based on things you post on social media? It really can be a lose/lose situation for those of us with disabilities. If you post yourself getting out and having fun, you’re not that sick and if you post yourself lying in bed in pain, you’re attention seeking. If you do both? You’re not being consistent and therefore lying about your illness. It seems people are under the impression to be truly disabled, you have to be miserable, housebound 24/7 and silent. Out of sight, out of mind.

Recently I had the displeasure of being accused of faking my illness by a family member. Why? Because the wide range of photos on Facebook show my life for what it is; inconsistent.  Some days I am in my wheelchair and some days I socialise with friends. Anybody with a chronic illness knows that you have your good days and your bad days. When you do have your good days, you take advantage of them. I was told by said family member to get off the internet and “go for a long walk.” I’m sure some of you reading this are scoffing at the very idea. I was pleasantly surprised to see how many of my non spoonie friends stood up for me especially when the conversation got nasty. Funny thing is this person hasn’t seen me in five years, so it’s not like they have seen me at home contorted in pain with heat packs attached to me and medicated up to my eyeballs.

Disability and Social Media

I’m sure a lot of us with invisible conditions face these judgements and questions pretty regularly. Unless you live the spoonie life, you don’t know what it is like to be ridiculed and made to feel insecure simply by sharing your life, the good, the bad and the ugly.

For most, social media is a way to pass the time. It’s entertainment. But for those of us who do not have the luxury of having a vibrant social life, Facebook, Twitter, Snapchat etc are what keeps us connected to the world on a personal level. Have you been told you’re “always on Facebook”? Well, I don’t know about anyone else but many of my fellow spoonie friends also use Facebook to connect with loved ones. I scroll through my feed to check in on them and to see how other loved ones are doing since I am not able to get out and visit people as much as I would like to. Of course I do enjoy the entertainment aspect of social media, I like the Buzzfeed quizzes and the odd meme too. I am vocal about all aspects of healthcare and politics too. I’m a pretty opinionated person, I don’t think that should be frowned upon though.

Social media is a fantastic way to raise awareness of the various conditions that fall off the radar. Thanks to selfie campaigns and social media challenges like the ice bucket challenge for ALS (or my beloved REDS4VEDS campaign) the general public know more about diseases that previous generations may not have ever heard of. Even simply sharing a meme or infographic about a condition can educate thousands or possibly millions of people worldwide.

me good day:bad day

Posting our feelings about our condition or how the health system/Government let us down may come across as moaning or self pitying but for the majority of us, we just want to be heard. It is so frustrating to live in a country where there is an incredible lack of care (both senses of the word) and to witness the poor quality of life those with chronic conditions have. Again, when you’re isolated from the outside world, you don’t get to vent to someone in person, like most people do. We can’t just get up and leave the house to visit a friend for a cup of tea and get things off our chest. Most people ignore these posts, and you know they will but, you also know that your fellow spoonie friends will respond and be empathetic. Sometimes just seeing a comment saying “I hope you feel a bit better tomorrow,” can brighten up your day.

Posting a wheelchair selfie or a “good day” selfie doesn’t have any motive, we post photos without thought, just like everyone else. People post photos of themselves in the gym, or their food. What’s so wrong with us posting photos showing the complexity and inconsistency of our lives? Again, it’s about awareness. I think so many people are under the impression to be truly disabled, you must be missing a limb or in a wheelchair full time. As I’ve said, we do have our good days, they are far and few between and so on those days, we take photos and post. To be honest, most of the time it’s just a way to keep all the photos in one place. I also love when Facebook sends me a memories notification. I often get to see photos of a day I’ve completely forgotten about or a post of how ill I have been. I look back and see I’ve survived so far, and that can sometimes boost my motivation to keep fighting for recovery.

The thing about social media is it has given people the confidence to be cruel and rarely have to deal with the repercussions of their words because they post in the comfort of their own home. In reality, the majority of keyboard warriors wouldn’t say these things to your face. Also, these people forget they have the free will to scroll on by or unfollow someone if they don’t want to see “depressing” posts (yes, my life was too depressing for this lovely family member). There’s a plethora of posts on social media that aren’t to everyone’s liking or taste and most of us choose to either ignore them because it’s not worth loosing a friend or a family member over.

Anyway, I just wanted to get this off my chest because it is something that has been bothering me for awhile.

Until next time,

Z.M

 

 

 

Friday Feelings with A Chronic Voice

Hey there, hi there, ho there!

Sorry we are late to the party this week. I’ll explain in my post tomorrow why I am late.

Anyway, this week I spoke to Sheryl from A Chronic Voice. Sheryl suffers from antiphospholipid syndrome (a blood clotting disorder), Lupus (SLE), Sjögren’s Syndrome, Epilepsy, PSVT (a heart rhythm disorder), a repaired mitral valve, osteoporosis from long term steroids, and couple more illnesses. You can find Sheryl on Facebook, Twitter and Instagram.

My name is Sheryl and I’m from Singapore, a sunny island in Southeast Asia. Writing and travelling are my two biggest passions in life (I know, cliché, but it’s true ;)). Other hobbies I’ve been dabbling with of late include flower arrangement and learning French.

I used to work in an ad agency as a frontend web developer, but had to quit as the stress was literally killing me (needed blood transfusions). I am still trying to find ways to balance my health while earning a living. I feel very fortunate to have such supportive loved ones.

I blog over at A Chronic Voice and Journey Jot (albeit much neglected). I am trying to find ways to merge the two 🙂

So now that we know a little about Sheryl, let’s look at her Friday Feelings entry.

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“Dear Diary,

It’s Friday and most people are out partying the night away. I am perfectly content that I’m at home, having a normal home-cooked meal or pizza with my partner, watching a movie. Sometimes we go for a spontaneous walk or outing. We do make an effort to dress up and go out once a month however, either for a dinner date, or to meet some new people. I feel that this is important even though I’d rather stay in, because I do not want to lose touch with the world. It’s so easy to become trapped in our own without even realising it, which creates tunnel visions and narrow minds.

Right now, I’m not in that much pain, so I’m all chummy with it. I think to myself, ‘oh, there’s plenty I can learn from pain.’ I’ll probably change my stance when it comes back with a sadistic grin…which should be soon as I have a surgery scheduled on Monday 😉

There is no future with chronic illness. To clarify, I don’t even know what’s up for tomorrow. I will have a rough idea only when I open my eyes in the morning. There is an underlying worry, for sure. I think to myself, ‘I am already so weak physically and unstable financially now. What more in 20 years time, when we all become naturally less resilient?’

Then again, I don’t feel as miserable as I used to anymore. I have come to realise that it is ridiculous to compare myself to the rest of society. Put it this way – if chronic illness and being in pain was the norm, how would the average person behave? From that perspective, I think I’m doing okay. My loved ones always say to me, ‘take it one day at a time, that’s all you can do’. And I think it’s getting drilled into my head pretty good.

Since I’ve become active on Facebook with my blog (I never really posted much before that), I think people have become more sensitive when they are around me. This is both a good and bad thing. While they are more compassionate, there is also a vibe of walking on eggshells, which I don’t like.

Strangers on the other hand are quick to judge anything invisible; I do that myself. But surprisingly, there are those with chronic illnesses who judge you harsher than society. Almost as if they have become so bitter and so engrossed with their illness, that they claim ‘ownership’ over it. And that’s risky behaviour which I hope I never sink too deeply into.

Thank you for taking the time to read my diary entry, and wishing you a fabulous week ahead!”

A big thank you to Sheryl for taking part in Friday Feelings despite having to prep for surgery tomorrow!

Can you relate to Sheryl’s entry? Do you find people walk around on eggshells around you or have you noticed competitiveness in chronic illness circles? You can comment below and let us know your thoughts. You can also follow Sheryl on Pinterest and Google+

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 tomorrow,

Z.M

x

 

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

x