To My Newly Separated Self After My Illness Led to Divorce

Writing this was emotional and cathartic. Not yet had the guts to post this on personal pages – maybe one day.

To My Newly Separated Self After My Illness Led to Divorce

Two and a half years later, I’ve written the letter I wish I could have read when my marriage ended because of my chronic illnesses.

To my newly separated self,

It’s over. It’s actually over. The person you loved the most has gone. Your best friend abandoned you. The person who made you a lifelong promise of commitment “for better and for worse… in sickness and in health” in front of your friends and family has walked away. No more cuddles, no more sweet texts, no more dinner dates… just — gone.

Yes, it is unfair, and it is scary. I know you’re heartbroken, hurting, ashamed and grieving. I can still remember feeling as if my heart was being ripped out through my stomach. I know you’re hurt, scared of judgment and being alone…

… but please give yourself space to grieve. You had already lost so much, your body, your mind, your dreams for the future and now your partner. Loss of any kind is difficult to deal with, so allow yourself to grieve. Cry, binge on Netflix, burn your photos, buy some new clothes, change your hair, eat liters of ice cream, absorb yourself in a book or visit your best mate — do whatever you need to do to process the reality that the relationship is over. The only wrong way to mourn is to deny yourself of the right and necessity to grieve.

Know that your spouse wasn’t rejecting you, they were trying to escape the illness. I don’t say this to justify the broken promises, nor devalue your pain. I say it to discourage self-blame, self-hate guilt and shame, because it is not your fault. You didn’t get to choose to be healthy, but your spouse chose not to love you unconditionally or honor their commitment.

Please don’t isolate yourself — you are not alone. Many relationships in which one partner has a chronic illness break down. It feels easier to stay in bed and not face the world, but there are people in your life who care about you and want to offer support. Yes, yes, some people will always be ignorant, but many will surprise you, and you can learn to ignore the ignorance. Besides, those who have dismissed your illness in the past may finally understand how it has infiltrated every part of your life.

Allow others to show you compassion and how valuable you are. It will help fight against and disprove the lies that you are unlovable, worthless, damaged goods or alone. It will reflect how resilient you have become. When people reach out, don’t send them away and when people feel far away, ask for support.

Learn to accept and forgive. Unfortunately, we live in a broken world inhabited with broken people that have broken relationships. This sad reality means forgiveness is necessary, unless you desire to grow bitter. The spiritual and emotional freedom that comes from forgiveness will help you accept your new life and grieve. Forgiveness, freedom and acceptance are far better than being consumed by hatred.

So don’t lose hope. Instead, share your pain, fears, tears, tissues, Netflix subscription, and tubs Ben and Jerry’s. Remember to say to yourself, “I have a restored relationship with the powerful creator of the universe, and his faith gives me tangible hope. I am loved and resilient. It’s OK to grieve. I can forgive and persevere.”

Besides, now that you’re single, you no longer have to consider someone else in most decisions you make or shave your legs every week. You can eat the food you want, spend more time with friends, choose the TV channel and work toward regaining your independence. 

Know that you have the strength to grieve your previous life and accept this new one. Keep trucking on.

With care, compassion, empathy and love,

Your divorced self.

P.S. I don’t recommend looking at wedding photos too much — it’s not a fun time!

How To Support Someone With a Chronic Illness: Listen

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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‘Destined’ to be Depressed

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.

You’re *so* lucky!

Have you ever had the ‘joy’ of experiencing a conversation similar to this on a Sunday afternoon?
“What time do you start work tomorrow?”
“Ummm, I don’t work on Mondays.”
“ahhh, you’re so lucky!”

I lost count of the number of times I’ve had similar conversations. I understand that for most people not having to work on a Monday would be a gift, a luxury. But I don’t work Mondays, nor Wednesdays, Thursdays or Saturdays. Even the days I do work are only half days. I know many people would love to work only three days a week, but not me.

Many chronic illnesses can cause chronic fatigue, pain, vertigo, nausea, migraines, weak bladder or bowel, overwhelming sadness, debilitating anxiety, low immunity and muscle weakness. On top of the symptoms there is often pharmaceutical side effects; drowsiness, memory loss, reduced cognitive ability, excessive sweating, insomnia, anxiety, nausea, trouble breathing and heart palpitations, just to name a few.

If these symptoms and side effects can impact one’s ability to complete the simplest, everyday tasks, how much more can it minimise one’s capacity to maintain employment. If you have severe, chronic back pain, both manual labor and sitting for extended periods of time are not possible. If you have muscle weakness, you lose your ability to lift and hold things. If you’re always tired, your concentration lapses and therefore, productivity reduces. If you’re symptoms are sporadic, you may feel fine at 7 am, but by the time you leave for work an hour later you simply can’t. You have to call in sick last minute.

Personally, if I work more much more than 15 hours a week, my ability to do housework, study, exercise, cook healthily, socialise and participate in leisure activities decreases dramatically. Even then, 15 hours of work does not provide the income needed to live in Australia. Imagine adding the costs of doctors visits, tests, alternate therapies and medications to an already stretched budget. I can’t begin to imagine what I’d do with a full-time income.

I can only dream of a day when I may be able to have sustainable full-time work. If you have the capacity to a maintain full-time job and have managed to be employed full-time (which isn’t easy in itself), *you* are the lucky one. My full-time job is staying healthy and looking after my body. I don’t get paid for that. There is no financial gain. Instead, my job success relies on hiring a team of people to help and support me. It’s not cheap!

So, next time you are tempted to tell someone who doesn’t work full-time that they’re lucky because they don’t have to go into the office tomorrow, reconsider. Yes, maybe they do have the best job in the world, but maybe, just maybe, they don’t feel lucky. Maybe they would do almost anything to switch bodies and jobs with you because you are the lucky one.

5 Stages of Endo*

                                                                             *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

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)

“When do you write and why?”

I write when I am overwhelmed with emotion. I often find myself burdened with depression, anger, disappointment, frustration, anxiety and physical pain. I suffer from severe, chronic pelvic pain caused by a medical condition called endometriosis. I also battle a complex mood disorder and have since I was a child. As such, emotions have been my main inspiration for creative writing since childhood. My feelings manifest within, as images and phrases; they then translate into lyrics, poetry or dramatic dialogue. It has helped me conquer self-harm and suicide. So, throughout my life creative writing has become one of my closest companions and a best friend to my physical and mental illnesses. I also write when I am filled with joy, sadly however, this doesn’t happen often. Essentially, I write when I am feeling emotional as it helps me cope with life by expressing, exploring and escaping my often overwhelming and painful reality.

What a waste!

So, I went to my surgeon to get some questions answered. He wouldn’t quickly reply to my e-mail, so I had to go in. 15 minutes and $140 later I was left with no hope at all, just a script for an injection called Zoladex, or Goserelin. Now, Goserelin is used in men to treat prostate cancer. It is used in women to treat certain breast cancers or a certain uterus disorder (endometriosis). 

The worst part, which puts me in quite a dilemma, are the side-effects: lots of weight gain, anxiety and hot flushes. I don’t think is very wise then, for someone who already weighs over 110kg, has a unstable mental illness and over-heats to take suck medication.

Is further weight gain, added anxiety and more heat worth the great possibility of pain relief?… did I mention they are injections that last for 6 months, so “stopping” the treatment isn’t an option.

Oh the dilemma. Someone, please, make this decision easier!