What ‘in Sickness and in Health’ Really Means

First published on The Mighty.

If you’re thinking about marriage – you may be engaged, talking about engagement or fanaticising about marrying that beautiful man. Whatever your status is, seriously ask yourself, are you really ready to say “I do.”

After writing a letter to my newly divorced self I realised, at 20 years old, my fiancé had no idea what he was committing to. When he looked into my eyes, shaking with nerves and excitement as he said “I do,” he actually didn’t understand what “in sickness and in health” meant.

I was pretty healthy! I was studying full time and had two jobs. Yes, he knew about my struggle with depression and had cared for me through many chest and sinus infections. Even though he knew all that when he put a ring on it, he was not prepared for Chronic Pain, Endometriosis and PCOS. Really, who is?

When we married in November 2010 we were both pretty healthy. Sadly, the chronic pain from endometriosis had well and truly set in during my January period. We had barely been married two months and his promise to love me in sickness and health was already being tested.

What does in sickness and in health mean?

Sure, you’re both healthy now. You can run, go for strolls on the beach, have a 10 pin bowling date, have painless sex and ready to stick by your partner for better and worse. But…

Are you willing to take an income hit when if they can’t work full time?

Are you willing to use days off to drive your partner to the doctors?

Are you willing to accept potential infertility?

Are you willing to see a marriage counsellor to help you process the grief and changes together?

Are you willing to see a sex therapist, even if it is super embarrassing and awkward?

Are you willing to deal with your grief?

Are you willing suck up your pride, seek your own support and see a counsellor yourself to help you accept, process and manage your own feelings of loss, disappointment, resentment, anger, bitterness and unfairness?

Are you willing to use your leave to help care for your partner if they need surgery?

Are you willing to watch the person you love the most in this world suffer physical and mental pain?

Are you willing to advocate for your partner when they have lost hope and when no one else will?

Are you willing to learn about the illness with your partner?

Are you willing to do ask your friends and family for support?

Are you willing to try new activities, ones that you can do together, things you wouldn’t have tried until your options were limited?

Are you going to stick around and choose to love that person every day until ‘death do us part,’ even if you hate the illness?

It is true that you never know how you will react in a situation until you’re in it. But if you can’t answer yes to many of these questions, maybe it’s something to think about.

 

We’re All In This Together

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.

The Annie Chronicles

For those of you who were wondering why I own a uterus-teddy, thank you for asking! Yes, she freaks some people out but more than anything else, she sends eye rolls right in my direction.

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Meet Annie, my adorable, pink, fluffy uterus and follow our adventures!

People should know that eye rolls and awkwardness only fuelsmy quirkiness… but as fun as it is seeing people react to my plush friend, Annie is a symbol of something greater.

She is a psychological tool to help me associate my ‘uterus’ with kindness and appreciation, rather than the hatred I’ve felt for many years. Hating your body can be toxic and psychologically damaging, but by the grace of God, Annie has really helped me to accept my body the way it is, disease and all.

For those wondering why I called her Annie, thank you for asking! As a hormone treatment to manage the Endo and PCOS, I am taking a progesterone pill called Visanne… if you missed it, Visanne, just with an ‘i’ to make it cuter.

Annie also reminds me to not feel ashamed of my illness and to keep fighting to break stigma. As a Christian and a 25 year old Australian woman I am often mortified, shocked and appalled at the ignorance and arrogance in our society. Our culture oozes with hypocritical judgement and thoughtlessness that only turns into pain which shatters a world that is already deeply fractured. In the realm of ignorance there is often little room for genuine compassion and helpful encouragement. I encourage anyone who has a friend with Chronic Illness to stop being ignorant and support the people you love by listening, researching and learn.

Annie has helped me normalise conversations on women’s health, particularly regarding Endometriosis and PCOS, diseases that can infiltrate every other area of your life: the rest of your body, relationships, work, mental health and your sense of self.

If you’re looking for your own plush organ, you can head over to i heart guts!

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.

Endo Bloat

So, in the last 3 months I’ve lost 11kgs. The doctors have been telling me for years that losing weight would make me feel much better. In a way they were right, it does feel nice putting on clothes that are now too big. It’s nice looking at my body and seeing that it’s smaller… but it’s made me feel worse about my endo.

11kgs ago, sure, I’d feel nauseous and bloated, but now I can SEE the bloat and can feel how swollen it is when I push on my tummy. Wearing pants and a seatbelt makes it worse. I didn’t realise I could feel more uncomfortable. It is actually really distressing.

I think I would almost rather be fat.

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.

Already… but not yet!

The beauty when your devotion is exactly what you needed to read. When my body is sore, fighting infections & extremely fatigued and all I can manage to do lay down but can’t seem to fall asleep. So grateful for the reminder that I live in the era of “already… but not yet!” Every day I am alive I can sing God’s praises while I await for my new creation body! #endo #spoonie #faith #comelordjesus #patience #sleep #keeptruckingon #cartwheelsinheaven