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.
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.
permission and space to grieve,
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,”
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.
Wanna see my uterus? I am learning to love the body God gave me, despite the illnesses… besides, who doesn’t love cuddling a soft, squishy pink toy? #endometriosis #endthesilence #endo #endoactive #keeptruckingon #endoawareness #endoaustralia
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)
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.
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.