Tag: hope

We’re All In This Together

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I received some snail mail yesterday – an actual letter of the fun kind. It was such a joy to find it in my letter box, open and read it! A dear friend, a sister in Christ and chronic illness sent it from Sydney. We bonded during my gluten, dairy, and soy free diet trial; she was such an encouragement and had wealth of knowledge to make it a bit easier. When I opened the letter, I found “Chronic Illness Achievement” magnets. I was reminded that despite the pain, fatigue and headspins, I got out of bed, was kind and gentle with myself and I survived the day! It’s made this current, trifecta of a flare up just a little bit easier.

There are so many things about having an illness that is so hard, sucky and unfair. Yesterday I was reminded of one of the blessings – the community, solidarity, friendship and mutual support that can only come from shared experiences. It sucks that we have to go through the trails that we do, but at least we aren’t alone.

Sometimes I feel like I’m a member of some exclusive clubs:

When you can relate to people who also feel alone and misunderstood, no words can describe the relief and gratitude. While I was attending pain clinic, I made some beautiful friends whoes lives had been impacted in a similar way to me. One of the most significant and helpful parts of the program were these relationships. While I was in Lismore, I participated in a 12 step program where I found mutual support and understanding from others with mental illness. I made more more progress after 12 months of mutual help then I did with six years of one on one therapy. And last month I organised a met up with three other women who have Endo and living in Brisbane – we spent nearly 3 hours sharing our struggles and most of that time we were in laughter as we told our horror stories that no one else understands. Some of my closest friendships grew because we share pain, emotional and physical and had experienced the life-altering impacts it had on our lives.

I need to thank a zillion people for being on my support team – but this is my thank you to the many friends who have been able to encourage and support me as we have learnt to live with chronic illnesses. Thank you for being honest and vulnerable. Thank you for sharing and listening. Thank you for supporting me and letting me help you. Thank you for showing me I wasn’t alone when my feelings were telling me otherwise. Thank you for praying with me and for me. Thank you for your kind words and genuinely checking in when you were barely functioning yourself. Thank you for teaching me self-care and compassion. Thank you for pointing me to Jesus so that I could rely on God, rather than my weaknesses. Thank you for being a mirror so that I could see reality more clearly.

Remember, we are not alone and to believe that you are completely isolated is a lie from the enemy. You have me and have millions of others who, even though their individual experiences may be different, understand. They want to support you the way others have supported them and social media has made connecting and networking with people so much easier – especially the days you struggle to get out of bed!

My prayer is that you will find the courage, energy, and spoons needed to meet others who ‘get it and are also trying to manage their illnesses one step at a time. Feel free to send me a message – I’m an extrovert, so I love conversations and if I’m not well enough to chat today, I will tomorrow.

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…and even though we may not be able to physically dance like the wildcats, we’re all in this together.

How To Support Someone With a Chronic Illness: Listen

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If you love someone with a Chronic Illness, it’s easy to feel overwhelmed, confused and hopeless. What can you possibly do to help them? It can seem impossible, especially when it’s a struggle for the unwell person to understand and comprehend what would help his/herself.

Last month I had a few friends join me to watch a special screening of a documentary called “Endo What?” After the movie two of them asked, “what can I say to, or do for someone who tells me, ‘I have Endo?’ How can I support them?” I confess, hesitated before I could reply because everyone is different and has individual needs.

Even when I look at myself, there is a stark contrast; what I need today is very different to what I needed two, four and even eight years ago. The only way to find out what someone needs is to listen to him or her. You may find that listening and believing what you hear is more than enough.

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At the moment, I am pretty stable. I am managing the symptoms well and have reached an emotional state of acceptance. The most supportive act someone could do for me today is to listen to my rants. I want to create awareness and help others to empathize compassionately with the next ‘Endo Sister’ they meet. I want them to recognize the signs and symptoms, so if they know someone who is suffering, they won’t conclude that they’re just “faking it” and instead, encourage them to look into Endo themselves. If you know more than ten women, you know someone with Endo, and many remain suffering, in the dark, undiagnosed.

Alex in 2005 and early 2011 needed someone to listen to my experiencing and validate the pain, not just assume I was overreacting or faking it. In 2010, I couldn’t drive, cook or clean and those close to me quickly knew I needed help with those tasks.

Two to four years ago, Alex needed someone to listen and hug me as I cried. I needed people to hear about the pain and acknowledge the strength it took to get out of bed every day.

18- 24 months ago I needed someone to listen and see how hopeless and suicidal I was. Those who listened understood I was desperate. They knew I just needed to hear someone say, ‘I’m here for you, and we will keep trying different treatments until you get better.’

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By truly listening to someone you can begin to understand what is at the core of the sorrow and frustration, and thus offer better support. This is called “active listening.” By focusing on your friend, avoiding distractions, being non-judgmental, reflecting and clarifying what you’ve heard them say and asking open questions are a few simple active listening skills. Active listening is the beginning of exercising empathy and compassion.

Sometimes we need a hug. Sometimes we need to grieve, cry and vent. Sometimes we need a good distraction, and sometimes we need to laugh. Other times we need practical help, for example, by being a taxi service, chef or offer room service. Often we can’t verbalize or even identify our needs are, but if you listen to us, you can help us reflect on our foggy and disjointed thoughts so we can start to understand ourselves.

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I believe this applies to any Chronic Illness. I would give the same answer to someone who asked for advice on how to support someone with PCOS, Chronic Pain or Mental Illness. The only way you can begin to help someone genuinely and effectively is to listen first.

If you ask the right questions and pay attention to what the person is communicating you will probably find they’re been trying to tell you what they need for a very long time. Unfortunately, medication, pain and other symptoms can mince our words, which require a bit more attention and reflection to get to the bottom of what is being said.

You can’t just assume that because your friend Jane Doe is having one experience, your cousin, Jillian is having the same experience. We all have different symptoms, comforts, effective distraction methods and relievers. Our functionality is as different as the severity of symptoms. The one thing we all have in common is the need to be loved, connected, wanted, valued, cared for and supported.

So the next time you’re feeling confused or overwhelmed by a loved ones illness. Stop. Ask. Listen. Reflect. Repeat. If you genuinely hear what’s being said and clarify: you can’t really go wrong, and at the very least, they will feel valued and validated through listening.

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The Why of Bloging

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This post was originally posted as “The Why”  page on WordPress

Since I’ve started writing more regularly, I’ve been asking myself, Why?

Why Blog? Why share my life? Why talk about super personal stuff? Why do I want people to read my stories? Why publish my thoughts online for anyone to read? Why bother?

The writer of Ecclesiastes sums it up perfectly in verse two, “Meaningless! Meaningless!” says the Teacher.“Utterly meaningless! Everything is meaningless.”

Without God, everything is meaningless. Without a greater plan and purpose, my life is in vain. This truth has greater weight within the context of the suffering and pain I’ve experienced daily for over 15 years, courtesy of Severs Disease, Chronic Depression, Anxiety, PCOS, Endometriosis, Regional Complex Pain Syndrome and various forms/degrees of abuse. My goal in blogging is not to play the victim, nor is it to insight a pitiful ‘woe is Alex’ response – it is simply to help me comprehend and convey my reality – my life.

Surely, there is a purpose. Surely, these icky circumstances can be used for good. Surely, this pain isn’t going to end merely with just being eaten by worms. Surely there is something bigger at play. There just has to be.

One of my beautiful friends recently said to me, “although I don’t have the same beliefs, I truly believe you would be dead if it weren’t for your faith in God.” She is right. If this is all for nothing, if it is all in vain, why endure this pain any longer than I have to?

Faith.

Romans 8:28-30 – And we know that for those who love God all things work together for good, for those who are called according to his purpose. For those whom he foreknew he also predestined to be conformed to the image of his Son, in order that he might be the firstborn among many
brothers. And those whom he predestined he also called, and those whom he called he also justified, and those whom he justified he also glorified.

I believe this is not ‘it’. I believe in the ultimate glorification of Jesus, my Lord, and Saviour. I believe my creator can use any and all situations for good. I have hope, tangible hope that the choices I make today on earth have eternal consequences and hope that ‘this’ isn’t all there is. I eagerly look forward to the day my soul will rest with my creator, and I will be perfectly healed. There will be no more sickness, no more sadness, no more selfishness and ultimately, no more sin.

My fundamental goal in life is to use what God has given me to bring glory to Him. ‘What God has given me’ includes spiritual gifts and blessings, talents, passions, revelation, wisdom, and life experience. My desire is to use these as gifts as tools to help build God’s Kingdom, but it has taken a long time to see my life experience as a good thing.

I want to share my story because it’s a story of hope. In an individualistic society, we can be surrounded by hundreds of people and still feel alone. This feeling is often compounded when isolation increases due to chronic illness. I want you to know you are not alone. There are other people who ‘get it’ and you shouldn’t be afraid, to be honest. Most people live in ignorance, but if you can be encouraged to be truthful, there is a strong chance understanding can lead to empathy.

As Christians we are called to love – love God and love each other. God, throughout most of Biblical history, has told His people to show compassion and look after the sick and vulnerable. I truly believe that genuinely listening to someone evolves into compassionate understanding and awareness which then leads to supporting and loving that person.

This is the motivation to be as honest as I possibly can because I know I am not alone. I know too many women who want their horrible periods to be validated. I know too many people who isolate themselves due to depression. I know too many individuals who struggle to get out of bed because they’re in great pain. If you can understand someone’s illness even a smidgen more, you demonstrate love to them.

Imagine being able to tell someone ‘you matter to me because you matter to God’ by simply listening to them. Imagine being the first person to express ‘I believe your pain is real, I know you’re not faking it.’ Imagine being able to show people what Jesus is like by being more aware of how to support someone in a practical and helpful way. Unfortunately, we cannot read minds, which is why educating yourself and learning how people are affected by adversity can show true empathy, compassion, and love. I know when I hear someone mention an illness they have I want to find out as much information as I can. I feel like I can better support them if I understand them, even if it’s just a little bit.

2 Corinthians 12:9 – But he [The Lord] said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore, I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.

I am weak. I am flawed. I have blemishes. I am far from perfect. I had the opportunity to have my blog, The Five Stages of Endometriosis shared by a few different groups. One of them was Endo Active, who, even after their edit left this part in, “I’ve always been extremely grateful to have such a wonderful and supportive family, both earthly and spiritual. God has sustained, challenged and strengthened me. I praise Him every day for giving me His Spirit, Jesus sacrifice, and Gods love. I give thanks for some tangible hope as I eagerly await the perfect and restored body I’ll have in the New Creation.” Had I not openly shared my story and my life in such a raw and honest way, I would have not had the opportunity to proclaim Christ, my true hope. When I [admit my faults, my failings, my struggle and] decrease, He increases.

‘Destined’ to be Depressed

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The Problem with Dysthymia (or Persistent/Chronic Depressive Disorder)

Dysthymia isn’t a word most people hear, even for those with a chronic depression diagnosis. According to the DSM-V, Dysthymia (or PDD/Persistent Depressive Disorder) is a mood disorder where you experience a low-level depression that lasts for at least two years.

If you’re like me, depression is normal. When I reached high school and started to make genuine friends, I was shocked to learn that deep down, most people didn’t want to die. I was amazed that most other people didn’t cringe at the thought of spending another 40, 50, 60 years stuck in your body, living with yourself. But not only was that not normal; it wasn’t healthy.

Depression runs in my family, on both sides, so I knew I had depression. Unfortunately 15 years ago, no one would diagnose or medicate a teenager, let alone a child. But as an adult, I’ve tried every treatment for depression under the sun and when nothing seems to ‘fix you,’ it’s easy to start thinking ‘maybe I was destined to be depressed.’

The problem with Dysthymia is…

 …that it is exhausting and relentless.

Medication and psychotherapy improve symptoms but doesn’t relieve them. You don’t get a chance to ‘relapse’ because you were never really in recovery. Hopelessness is hard to fight against when depression is relentless and its core is pessimism, sorrow, apathy, agitation, emptiness, lethargy and self-hatred. Compound that with never getting a break. That hobby you love can only placate you for a few hours (at the most). That movie will only distract you for minutes.

It feels like no matter how hard you try, there is no escape route. Imagine the person who annoys you the most, that person whose company only agitates and shatters you. Imagine never being able to get a minute away from that person, because it’s you.

Getting out of bed often feels like I’ve exerted the same amount of energy as you would at a gym session. The motivation to make healthy choices and maintain personal hygiene is arduous. The mental and emotional preparation needed to participate in activities just wipes me out. It never ends. It is exhausting.

…that it has nothing to do with life circumstances.

It was day 2 of my honeymoon when I texted my mum, “I love my job, I love what I am studying and I’ve just married the man I love, but I am still depressed.”

I was shocked as I sent it. Why can’t I just be ‘happy’?

When you have dysthymia, you can’t honestly answer ‘good’ when someone asks how you are, even if your circumstances are ‘good’ and stress-free. This only compounds the hopelessness, adds to the sadness and intensifies to the guilt. You can see the good things happening around you. You can appreciate the beautiful people in your life. You want to enjoy the things everyone else does… but you can’t. 

…the preference to die.

How ungrateful! You should be thankful you are alive. Life is a precious gift. There are plenty of people who have it worse. Your life isn’t that bad.

All of these things are true. Logically I understand it, but emotionally? I just can’t. I’m not suicidal; I won’t kill myself, nor do I have the plan to do so – but all I want is to escape myself and for the depression to end. If a bus ran over me, I’d be okay with it. If someone told me that I had 24 hours to live, I think I would dance. Often the thought of living another ten years is overwhelming, let alone 50 or 60.

Expressing these thoughts and feelings can mean future, legitimate suicidal ideations appear fake or a cry for attention (rather than genuine help). To say, “I wish I were dead,” is not a lie. Unfortunately, most people cannot distinguish genuinely suicidal thoughts from a less extreme preference to die.

…it’s so easy to hide.

When you’ve been depressed so long, it’s not only normal for you, but normal for those around you. People may not realise you’re depressed because that’s ‘just how you are,’ and it’s easier to be labelled a pessimist. If the symptoms are normal and treatments haven’t seemed to work, I think most people are less likely to seek extra help and support. If there appear to be no red flags to, well, flag – why bother, why waste my time and the doctors? It’s can be easier just to keep trotting away, as you have been, pretending everything is okay.

…the high rate of comorbidity.

 Due to the chronic nature of dysthymia, it rarely stays at that ‘lower-level’ – enter Double Depression. Depression (Major Depressive Disorder) is episodic – it has a beginning and an end. Many who receive effective treatment only experience depression once and others relapse, but it ends. I believe this is why, in Australia, only ten sessions with a psychologist is covered under Medicare. Ten is often enough.

…treatment is as long term as the disease.

I’ve been taking medication since 2008, and I am likely to be taking it until the day I die. I have seen a string of counsellors, psychologists, psychiatrists and other mental health professionals since 1998. I will probably have to for the rest of my life.

Because our brains have the ability to adapt constantly, Cognitive Behavioural Therapy (CBT) is one of the most effective forms of treatment for all forms of depression. CBT is about thought monitoring: consciously catching, challenging and changing your thoughts. Over time, the way your brain processes information changes, your feelings follow and eventually this becomes the norm – welcome to recovery.

Thought monitoring is exhausting, but for me, it never ends. Despite nearly 20 years of CBT, my brain hasn’t quite been able to make it natural. So, if I want to manage my mood and maintain some control, I have to CONSTANTLY assess and monitor my thoughts so that I can challenge them. It’s the only way not to spiral into a dark pit when stress rears its ugly head. It’s the only way I can try to shorten and minimise the frequency and intensity of an episode of Double Depression.

Not only this, but long term depression can also trigger other health issues, like anxiety, side-effects from medication, chronic pain, chronic fatigue, tension headaches, IBS, TMJD, addiction, obesity and insomnia. Persistent depression is rarely ‘just’ dysthymia.

The good news is that you’re not alone.

Unfortunately, mental illness is common – 1 in 5 Australians will experience a mental illness in any given year. The good news is, this means that awareness is increasing and mutual support is easier to find. It means that everyday stigma decreases and a treatment becomes more accessible. Find comfort in the fact that you are not alone.

With the right support networks – GP, psychiatrist, psychologist, family and friends – I have become more aware of my mood and have finally learnt to manage it. Double depression is decreasing, as the depressive episodes get shorter. I’m learning to practice self-compassion, rather than guilt. Every day, it gets a little bit easier to exercise and convert my unhelpful thoughts to helpful thoughts. Hope shouts a little louder than hopelessness. The deeper my relationship with God becomes, my capacity to fully trust Him and have genuine hope for complete healing increases.

Exercise, forcing yourself out of bed every day, taking your medication regularly, contributing to your community, meeting with friends, prayer, participating in therapy and leisure activities are just a few thing prescribed to treat depression. Be patient and persevere – healing and developing healthy habits takes time. Be honest about how you’re feeling and coping with life. Follow the guidance and advice of health care professionals. Find people who understand and will show you compassion when you can’t show it to yourself.

If I can learn to manage it, so can you.

‘Destined’ to be Depressed

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The Problem with Dysthymia (or Persistent/Chronic Depressive Disorder)

Dysthymia isn’t a word most people hear, even for those with a chronic depression diagnosis. According to the DSM-V, Dysthymia (or PDD/Persistent Depressive Disorder) is a mood disorder where you experience a low-level depression that lasts for at least two years.

If you’re like me, depression is normal. When I reached high school and started to make genuine friends, I was shocked to learn that deep down, most people didn’t want to die. I was amazed that most other people didn’t cringe at the thought of spending another 40, 50, 60 years stuck in your body, living with yourself. But not only was that not normal; it wasn’t healthy.

Depression runs in my family, on both sides, so I knew I had depression. Unfortunately 15 years ago, no one would diagnose or medicate a teenager, let alone a child. But as an adult, I’ve tried every treatment for depression under the sun and when nothing seems to ‘fix you,’ it’s easy to start thinking ‘maybe I was destined to be depressed.’

The problem with Dysthymia is…

…that it is exhausting and relentless.

Medication and psychotherapy improve symptoms but doesn’t relieve them. You don’t get a chance to ‘relapse’ because you were never really in recovery. Hopelessness is hard to fight against when depression is relentless and its core is pessimism, sorrow, apathy, agitation, emptiness, lethargy and self-hatred. Compound that with never getting a break. That hobby you love can only placate you for a few hours (at the most). That movie will only distract you for minutes.

It feels like no matter how hard you try, there is no escape route. Imagine the person who annoys you the most, that person whose company only agitates and shatters you. Imagine never being able to get a minute away from that person, because it’s you.

Getting out of bed often feels like I’ve exerted the same amount of energy as you would at a gym session. The motivation to make healthy choices and maintain personal hygiene is arduous. The mental and emotional preparation needed to participate in activities just wipes me out. It never ends. It is exhausting.

…that it has nothing to do with life circumstances.

It was day 2 of my honeymoon when I texted my mum, “I love my job, I love what I am studying and I’ve just married the man I love, but I am still depressed.“

I was shocked as I sent it. Why can’t I just be ‘happy’?

When you have dysthymia, you can’t honestly answer ‘good’ when someone asks how you are, even if your circumstances are ‘good’ and stress-free. This only compounds the hopelessness, adds to the sadness and intensifies to the guilt. You can see the good things happening around you. You can appreciate the beautiful people in your life. You want to enjoy the things everyone else does… but you can’t.

…the preference to die.

How ungrateful! You should be thankful you are alive. Life is a precious gift. There are plenty of people who have it worse. Your life isn’t that bad.

All of these things are true. Logically I understand it, but emotionally? I just can’t. I’m not suicidal; I won’t kill myself, nor do I have the plan to do so – but all I want is to escape myself and for the depression to end. If a bus ran over me, I’d be okay with it. If someone told me that I had 24 hours to live, I think I would dance. Often the thought of living another ten years is overwhelming, let alone 50 or 60.

Expressing these thoughts and feelings can mean future, legitimate suicidal ideations appear fake or a cry for attention (rather than genuine help). To say, "I wish I were dead,” is not a lie. Unfortunately, most people cannot distinguish genuinely suicidal thoughts from a less extreme preference to die.

…it’s so easy to hide.

When you’ve been depressed so long, it’s not only normal for you, but normal for those around you. People may not realise you’re depressed because that’s ‘just how you are,’ and it’s easier to be labelled a pessimist. If the symptoms are normal and treatments haven’t seemed to work, I think most people are less likely to seek extra help and support. If there appear to be no red flags to, well, flag – why bother, why waste my time and the doctors? It’s can be easier just to keep trotting away, as you have been, pretending everything is okay.

…the high rate of comorbidity.

Due to the chronic nature of dysthymia, it rarely stays at that ‘lower-level’ – enter Double Depression. Depression (Major Depressive Disorder) is episodic – it has a beginning and an end. Many who receive effective treatment only experience depression once and others relapse, but it ends. I believe this is why, in Australia, only ten sessions with a psychologist is covered under Medicare. Ten is often enough.

…treatment is as long term as the disease.

I’ve been taking medication since 2008, and I am likely to be taking it until the day I die. I have seen a string of counsellors, psychologists, psychiatrists and other mental health professionals since 1998. I will probably have to for the rest of my life.

Because our brains have the ability to adapt constantly, Cognitive Behavioural Therapy (CBT) is one of the most effective forms of treatment for all forms of depression. CBT is about thought monitoring: consciously catching, challenging and changing your thoughts. Over time, the way your brain processes information changes, your feelings follow and eventually this becomes the norm – welcome to recovery.

Thought monitoring is exhausting, but for me, it never ends. Despite nearly 20 years of CBT, my brain hasn’t quite been able to make it natural. So, if I want to manage my mood and maintain some control, I have to CONSTANTLY assess and monitor my thoughts so that I can challenge them. It’s the only way not to spiral into a dark pit when stress rears its ugly head. It’s the only way I can try to shorten and minimise the frequency and intensity of an episode of Double Depression.

Not only this, but long term depression can also trigger other health issues, like anxiety, side-effects from medication, chronic pain, chronic fatigue, tension headaches, IBS, TMJD, addiction, obesity and insomnia. Persistent depression is rarely ‘just’ dysthymia.

The good news is that you’re not alone.

Unfortunately, mental illness is common – 1 in 5 Australians will experience a mental illness in any given year. The good news is, this means that awareness is increasing and mutual support is easier to find. It means that everyday stigma decreases and a treatment becomes more accessible. Find comfort in the fact that you are not alone.

With the right support networks – GP, psychiatrist, psychologist, family and friends – I have become more aware of my mood and have finally learnt to manage it. Double depression is decreasing, as the depressive episodes get shorter. I’m learning to practice self-compassion, rather than guilt. Every day, it gets a little bit easier to exercise and convert my unhelpful thoughts to helpful thoughts. Hope shouts a little louder than hopelessness. The deeper my relationship with God becomes, my capacity to fully trust Him and have genuine hope for complete healing increases.

Exercise, forcing yourself out of bed every day, taking your medication regularly, contributing to your community, meeting with friends, prayer, participating in therapy and leisure activities are just a few thing prescribed to treat depression. Be patient and persevere – healing and developing healthy habits takes time. Be honest about how you’re feeling and coping with life. Follow the guidance and advice of health care professionals. Find people who understand and will show you compassion when you can’t show it to yourself.

If I can learn to manage it, so can you.

5 Stages of Endo*

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                                                                             *Not scientifically proven. 

‘Uterus.’ There, I said it! Uterus! Periods. Ovaries. Fallopian Tubes. Bleeding. Tampon. Rectum. Hormones. Bladder. Cervix. Menstruation. Vagina. Discharge. Pelvis. Pads. Endometriosis. 

Awkward.  

These words are often avoided. They’re not ‘kosher’ and they make people cringe. Slipping them into a conversation causes tension and awkward-turtles, but if I keep my mouth shut and stay silent, society remains ignorant.

For me, these ‘uncomfortable’ words are normal topics of conversation. Conversations that cost hundreds of dollars and occur during painful, exposing, vulnerable, demoralising and uncomfortable ‘internal examinations’ that make a pap smear feel like a stroll in the park. Conversations with a plethora of in-depth questions about the most intimate details of my life – sex, bowel movements, urination, contraception, pregnancy, PMS, weight, fractured relationships and mental illness… Oh, did I mention these ‘chats’ are with complete strangers? Unfortunately, when you’re chronically ill, second, third and even twelfth opinions are often necessary.

Ironically, I have found conversations about Jesus, faith, religion and politics are easier than talking about a disease that affects the reproductive organs of 1 in 10 females worldwide.

Stage 1: Faking it 

Courtesy of PCOS, acne sprouted when I was 11 and once puberty kicked in, my face resembled a pepperoni pizza. At 15 I started taking Roaccutane – a potent pharmaceutical to treat cystic acne. Falling pregnant while taking Roaccutane guarantees a deformed foetus, so the dermatologist refused to prescribe it unless I also took the pill (which never made sense as I wasn’t sexually active).

Within a few months, the chronic abdominal pain started. The result: x-rays, ultrasounds, specialists, painkillers, frequent school absences and a colonoscopy. Diagnosis: psycho-sematic pain. It was all in my head. Treatment: psychology and cease taking Roaccutane. I was a perfectionist with anxiety falling behind at school and an extrovert isolated from the world. Rumour was that Alex was “faking it” and it wasn’t long before I started to spiral into a dark, damp hole I couldn’t escape. I was in pain all the time and there was no physiological cause. I never finished the course of Roaccutane and I stopped taking the pill. A few months later the pain resolved, but ovulation and menstruation had became hell. No one suspected a gynaecological condition or that ‘the pill’ was the culprit.

Stage 2: Diagnostic Conundrum

Fast-forward 5 years: the pain returned less than three months after my wedding (and four months of hormonal contraception). I took over three months sick leave and deferred my third semester at college. Again: scans, ultrasounds, blood tests, specialists, painkillers, weight gain, isolation. Again: no answers. I was a ‘diagnostic conundrum.’  

Stage 3: Diagnosis

An ovarian cyst eventually showed up on an ultrasound, so I booked in for a cystectomy. After six months on the surgical waiting list the cyst resolved itself. Instead, I had a diagnostic laparoscopy (keyhole surgery of the pelvis) where the gyno found endometriosis, a tissue similar to the lining of the uterus found outside the womb. Turns out I also have PCOS. Unfortunately, treatment did not stop the pain, but I had a name! Oh, the relief and closure. A diagnosis meant I wasn’t crazy! 

There were legitimate medical reasons for the constant pain, chronic fatigue, cramping, nausea and bloating. I finally understood why I had persistent acne, headaches, heavy periods, skin tags, difficulty losing weight, erratic mood swings, a dodgy immune system and pain during urination, bowel movements and sex.

Stage 4: Grief

What followed was a three-year process of watching all I deeply valued in this world fall away. I lost control of body; my nervous system was overworked and my mind was dulled with painkillers. The depression worsened and my financial security vanished. I had to leave my amazing job and eventually my marriage completely dissolved. I left the life I had built in the city to return to my hometown, move into my Aunt’s granny flat and share a bed with my mum. (I actually have no idea how I would have survived without such an amazing family!)

I ceased being an independent adult. I was 24, divorced, obese, unemployed, severely depressed, unable to exercise or even stand for more than a few minutes, incapable of doing my own laundry (and most other housework), living on frozen meals, dropping and breaking my valuables, constantly losing stuff and sharing a bedroom with my mother. I was like a dependant child, living in a dark, damp pit with no exit plan. I had such regular appointment, my GP became like a best friend.

By society’s standards I was a complete failure, Darwinism says I should have died years ago. I spent five years grieving the death of my dreams, goals and hopes I had for my life because there is no cure for endometriosis. 

Stage 5: Acceptance and Healing

I never stopped fighting for my health. After ten years of symptoms and five and a half years of non-stop pain, by the grace of God, the severity of my symptoms decreased. 

It took:

  • permission and space to grieve,
  • three surgeries,
  • trialling Visanne,
  • thousands of dollars in (conventional and alternative) specialist fee’s,
  • a willingness and determination to try almost any treatment options
  • improving my mental health,
  • forming emotional and medical support teams,
  • being active in the endometriosis community and sisterhood, 
  • taking the opportunity to participate in the documentary “Endo & Us,”
  • engaging with endometriosis creatively by expressing myself through photography, art, music and writing (click here to hear a song I wrote),
  • 100% dedication to an intensive chronic pain program,
  • taking the initiative,ignoring ignorance, never giving up,
  • and finding faith, hope and acceptance to finally be ‘okay.’

Sure, I still feel uncomfortable, bloated and nauseous. I cramp regularly and remain tired and in pain 99% of the time. But my flare-ups are shorter, less intense and not as frequent because I no longer react emotionally to the symptoms. Acceptance has led to spiritual, emotional and physical healing. I can now do basic housework, cook, socialise and exercise. I have a fulfilling part-time job, started losing weight, travelled, stood in the middle of a mosh pit and started my Masters degree.

I smile and laugh now because through the pain, the fight, the sleepless nights, the isolation and rejection, the lies, the heartbreak and the suffering my faith has developed. God never ceases to sustain, challenge and strengthen me as I eagerly wait for my restored, New Creation body that will no longer be plagued by endometriosis, PCOS or depression. Chronic pain has helped me find tangible hope and now my faith is solely in God, His holy and never-changing character and His perfect plan.
It saddens me that ten years from the onset of symptoms to a diagnosis and recovery is common but it will only change when we ‘end the silence.’

So for the sake of 178 million women around the world, I will fight, advocate and educate for increases awareness, research and a cure. I will continue to engage in awkward conversations on behalf of other adolescent girls and adult women who are being told the same thing in 2016 – “there is nothing wrong with you. It’s all in your head.”

So, this is me – Alex. I have endometriosis, it doesn’t define me, but it has changed me and taught me to be bold. I had endo removed from my rectum and cervix. My uterus aches, my ovaries have cysts, my cervix cramps, urinating hurts and my period sucks.

Now your turn – go on! Say it, just once. I dare you. ‘yoo-ter-uhs’…

…see, it’s not that scary 😉

Side Note: Through all these stages, I’ve always been extremely grateful to have such a wonderful and supportive family, both earthly and spiritual. I praise God every day for Jesus sacrifice, the Fathers love and the Holy Spirit’s power to transform my heart and heal my body. I give thanks for some tangible hope as I eagerly await the perfect and restored body I’ll have in the New Creation. 

Endo & Us: Testing 1

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When you finally get to see the docco you were part of and get to meet Endo Ambassador @melgreigradio at the #endomarchaust! Thank you #endoaustralia for hosting! #1in10 #allthefeels #endo #endthesilence #endometriosis (at Mercure Gold Coast Resort)

I’ll Endure Until I’m Cured

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This is step six in the grow program: I’ll endure until I’m cured.

I will persevere and I will fight. When I feel I can no longer withstand the discomfort and pain I can turn to my sisters to give me strength until I can see a glimpse of hope again.

I can hold onto God’s promise that says one day I will be healed completely. I will have a beautiful, disease free body. So, even if there may be no cure (for me: endo, PCOS or depression) in my lifetime, I know one day I will be completely cured from all that hurts me today.

Don’t be Imprisoned by the Here and Now

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It’s Endo awareness month; so I thought I’d share what hope looks like for me. Like many of us with endo and other chronic illness, we often have more than one issue we have to deal with in our lives. The primary problem becomes compounded by other issues; compromised immune systems, mental illness, chronic pain and other diseases. I’ve had clinical depression for 15 years and am convinced that it’s the reason why the pelvic pain moved from “acute” and “chronic.” It wasn’t until I learnt to manage the depression that I was able to manage the chronic pain – it was a vicious cycle. I was part of a “Grow Group” which is a 12 step program for mental illness (like AA).

Over the next week I will share three quotes from the Grow Blue Book (or the program). These have been one strategy that has enabled me to avoid reacting emotionally to the physical symptoms I regularly experience. It’s enabled me to gain a sense of control over something I have no control over. Even though I am trapped in an endo-infested body, it no longer infects my mind and heart. I am free!

Don’t be imprisoned by the ‘here and now.’ Nothing is forever. I am strong. One day there could be a cure. One day you may try a new treatment that helps. One day you will meet someone who understands and takes you seriously. Just because it sucks today, doesn’t mean it will “always” this sucky.

We can have hope by focusing on “facts,” not just fluffly positivity. We can have hope because we have been beautifully and wonderfully made by the creator of the universe. We can have hope because we have a purpose in life. We can have hope because we made it through the days past. We can have hope because we made it through today. We can have hope because every day endo awareness increases. We can have hope because science and technology is constantly evolving and developing. We can have hope because we have each other and we ARE loved.

I have hope because the God who made me loves me, supports me, cares for me, provides for me, sustains me and promises me a place in His new creation. Jesus death and resurrection has given me assured hope that one day I will be given a new body that will never be corrupted from rebelling against God’s good and perfect plan. I can look forward to Jesus returning, when, I will one day know true freedom and will be eternally safe from sickness, sadness and sin.

For more info on Grow check them out: http://www.grow.org.au