Tag: mentalillness

A Letter To The GP’s Who Never Let Me Give Up

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Yesterday during my GP appointment, my (female) doctor said, “Alex! I saw you in the coffee shop earlier, and I noticed you’re looking very pretty today. Have you done something with your hair?” It’s safe to say she made my day!

I have many people who have supported me as I’ve learnt to adjust to life with chronic illness – family, friends and health professionals. I’ve seen multiple GP’s in my life and three have stood out for me, one from each of the cities I’ve lived in since I left high school. Their non-stop encouragement, compassion, and validation have helped me survive a series of unfortunate events.

Dear Dr. Sydney, Dr. Lismore and Dr. Brisbane,

Thank you for validating me when I felt stuck in your revolving office door. There have been periods where I’ve seen you monthly, fortnightly and weekly and you never made me felt guilty for taking your time or like a burden. You probably have no idea the impact you’ve had on my journey through chronic illness, but these are a few of the things I thank you for as you validated me as a person and my experience as your patient.

Thank you for acknowledging your limits as a General Practitioner and referring me to health professionals who have more training and expertise. You were never offended when I sought other opinions, and your humility meant I was able to get accurate diagnoses and try new treatments. You showed me that an effective support network had many people and was multi-disciplinary. [Dr. Sydney,] I was stunned when you wrote a thank you letter to my naturopath for her insight and test requests that led to my PCOS diagnosis.

Thank you for listening to me. I may have left your office feeling hopeless (due to the nature of the chronic illness) and in tears many times, but I never left feeling unheard, ignored, uncared for or let down.

Thank you for respecting my dignity as an adult who can make her own decisions. Thank you for not pushing me to attempt risky treatments I was not prepared to try and acknowledging the research I had done on my own. Many times I came into your office, not as Ailment Alex, but as Advocate Alex, requesting a specific referral, treatment or test. Sometimes I was way off, but your encouragement empowered me to continue as an advocate and to keep opening new doors.

Thank you for not treating me like a drug addict or another ‘fat person.’ You never hid your shock when I shared horror stories with other health professionals. You also exercised great wisdom and respect as we managed my medication increases and decreases.

Thank you for being my friend. I don’t mean this in the creepy, dependent, unhealthy, unprofessional kind of way. You shared my disappointment when treatments didn’t work and celebrated the small victories, usually with more enthusiasm than I. You were often the person I spent the most time with (other than my family), and because you were holistic in your approach, you treated me like a person, not a patient.

Thank you for being practical. You understood my personal restraints, particularly transport restrictions and financial hardship. When possible, you gave me samples, helped me access the cheapest and most convenient options and always bulk-billed. Your efforts meant I could afford my healthcare, try different treatments and see new specialists that were often helpful.

Thank you for letting me cry and empathising with my pain, sorrow, grief, despair and the unfairness of my situation. I appreciate every time you agreed that my situation was unfair, saw me as a whole person, told me I didn’t deserve this and apologised when you had run out of tissues.

Finally, each of you said something to me that has stuck with me.

Dr. Sydney, when you, acknowledging we shared the same faith, asked to pray for me, then and there, you reminded me that although I felt isolated and hopeless, I wasn’t alone, and there was hope.

Dr. Lismore, when I came to you because my suicidal ideations had returned, you said, “I won’t give up until we get you better” (and you didn’t), you showed me I wasn’t alone, and there was hope.

Dr. Brisbane, when shared my insecurities that I felt like a hypochondriac because of a string of infections, you told me to “never apologise for looking after yourself. You know your body. If something feels off, never hesitate to see me.” You, again, reminded me that I wasn’t alone, and there was hope.

So, to these wonderful GP’s, thank you for acknowledging your limitations as a human, while giving me the dignity and respect I deserve as one. Thank you for using your role to bring hope and healing to a patient who needed it as they learnt to understand and manage their chronic illnesses.

Many Thanks,

Your Grateful Patient.

If you live in Sydney, Brisbane or the Northern Rivers (NSW) and looking for a good GP, feel free to message me and I’ll pass on the names.

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.

To Those Who Say Chronically Ill People Are ‘So Lucky’ Not to Work Full-Time

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For those who haven’t had the opportunity to read The Mighty blog site, I highly recommend it. They exist to shed light, break stigma, create awareness and build understanding about chronic physical and mental illnesses. They cover Endo, but also PCOS, IBS, IC, Anxiety and Depression which also come hand in hand with endo. Sometimes when our loved ones read something written by someone else (but it’s as if the person was mind-reading when they wrote it) it can have more impact on their understanding.

I’ve been able to write for them and it has also helped me process the struggle. I really recommend having a look, it’s extremely validating and encouraging!

To Those Who Say Chronically Ill People Are ‘So Lucky’ Not to Work Full-Time

‘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.

You’re *so* lucky!

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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.

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.

18 Months

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When I returned to the Northern Rivers I told myself I wanted to be well enough to return to work within 12-18 months. It seemed impossible, but I’ve always been a goal setter.

When I returned to the Northern Rivers my life was falling apart. The chronic pain had rendered me useless. I thought my life was going to be the endless pain cycle and an unproductive life… Which I came to accept.

When I returned to the Northern Rivers I thought I had lost everything – my health, my job, my husband, my independence, my ability to process information effectively and the list could go on. I was broken, rejected and hopeless.

The last 18 months have been horrible. They’ve also been filled with healing, joy, peace and love.

By the grace of God I found my purpose and worth in being His child, not in my abilities and work. I found healing from 15 years of mental illness. By the grace of God I can now manage pain I’ve had for over 4 & ½ years and becoming healthier day by day. By the grace of God I know I am loved and valued despite my short comings (and there are plenty). I’ve been able to continue to minister to Children.

By the grace of God I’ll be moving to Brisbane to return to vocational ministry and moving in with one of my dearest friends (also known as my heterosexual life partner).

By the grace of God I lost everything that was important to me so I could be reminded of how blessed I am that the perfect Shepherd found and rescued me. I have a greater understanding of the New Creation and suffering. I’ve learnt to come before my creator, hopeless and able to rely on Him.

I am so grateful for my wonderful friends and family. I am thankful for the illnesses that taught me resilience and gave me a drive to persevere. I am thankful for the pain clinic that taught me how to manage my illnesses while gaining control back over my body.

I am grateful for the grace of God that allowed for healing since returning to the Northern Rivers, 18 months ago.