Spoonie Tales: Enough

You know you live with chronic illness when you spend the evening convincing yourself that having a shower and washing the dishes today was enough.

It wasn’t a wasted day.
I’m not a waste of space.
I’m not lazy.
I did my best.
I’m not worthless.
It’s okay to rest.
Be kind to myself.
My worth is not based on what I do or do not do.
Today was enough.
I am enough.

Do I believe it yet?

Another Endo Story

Another Endo-Story blog header.pngSo, it’s 10pm on a Tuesday night and I’ve just finished watching SBS’s Insight episode (watch it here) on Endometriosis. Less than five minutes in, my chest was tight, my mouth was dry and my head was racing.

Hearing stories from other women who have been dismissed, misunderstood and ignored for years sent me back to 2013/14, before I had learnt to manage my symptoms well. I had been experiencing level 6-7 pain every day for a few years now.

As I watched Insight, one memory jumped in front of me, waving its arms, demanding my attention. What better way to process this loud and intrusive memory than to share it by telling Another Endometriosis Story?

I was living in a granny flat with my mum, under my aunties house. My mum was out for the night, I had the place to myself. I decided to have a shower before going to bed. My body started to relax as the warm water was cascading down and I could smell the sweet fragrance of my strawberry body wash…

BAM. OUCH! FAR OUT!!!

I hit the shower floor as my pelvis was stung with a sharp, intense pain.

I’m not sure how long I lay curled up on the shower floor, the water now feeling like small bullets hitting my back before I was able to reach the tap to turn it off. Somehow, I managed to wrap myself in a towel and attempted to get into my bed – I limped about 5 steps before I collapsed to the floor again, wearing nothing but a towel.

My aunty and uncle were home upstairs. I cried out ‘help’ as I yelled in agony. Surely someone would hear me or come downstairs to use the laundry. Surely. This continued what felt like an eternity. No one was coming downstairs.

I finally noticed my phone on the floor, about 5 meters away from me. I curled into child’s pose, closed my eyes and did some deep breathing, preparing my body to be dragged across the floor with the little strength I had. I may have added carpet burn to the mix, but I had my phone. I called my aunties home number – my uncle answered, ran downstairs and yelled for my aunty. He phoned for an ambulance while she dressed me. Together they lifted me from the floor and manoeuvred me to the bed.

We waited until that glorious green whistle was in my hand and the methoxyflurane powder was in my lungs, numbing the pain (not completely, but enough). My aunty and I managed to explain my medical history, that I had Endometriosis and PCOS – but as is with many of us EndoSisters, that probably caused more harm than good. You know, those painful periods – suck it up. It’s just hysteria or hormones.

That night I lay in A&E being injected with morphine, crying and unable to sleep because the pain wouldn’t relinquish. Eventually, I insisted my aunty go home and get some rest. In her absence, the nurses tried to ignore me and any interaction I did have, I was labelled a liar, a drug addict and a drama queen. I was told that if I stopped crying I would experience pain relief. The crying stopped, the pain didn’t.

The sun eventually rose and I was beyond exhausted, completely drained. Surprise, Surprise – my blood tests showed nothing, I was a perfect bill of health. The registrar on duty and I briefly chatted before discharging me with some tramadol and a ‘good luck.’ No pain clinic referral, no gyno consult, no GP letter, no ultrasound – nothing. Just a painkiller that interacted dangerously with my other medications and a token pleasantry.

I wish I could say this is my only traumatic endo-pain-flare-up story, but it’s not. It wasn’t the first time and it’s definitely not the last. In Australia, we grow up learning that doctors and nurses are safe people and that hospital is a safe place to go when you’re not well. Sadly, healthcare professionals can sometimes be the worst perpetrators* in stories where women are demoralised, dehumanised, undermined, ignored and accused of lying about their pain.  Sadly, our hospitals are not trained and equipped to treat chronic pain ethically and effectively.  Sadly, hundreds of thousands (I feel like this is a conservative number) of women with genealogical disease and pelvic pain are treated this way.

Sister, you are not alone in your physical pain, your wounded heart or your endo-story. They estimate there are 176 million of us worldwide. 1 in 10 women is a LOT and every time the media shines a light on Endometriosis, the world becomes a little less ignorant and grows a little more compassionate. So, Sister, please continue to tell this story we share.

Friends, please listen to our stories and believe our pain is real and don’t compare any of us to another individual. If you don’t understand; ask questions, listen well and continue to learn about this silent epidemic – because 1 in 10 women have Endo. So, if you know 10 women, you know Endometriosis.

*I know this is a bold statement – there are some wonderful, empathetic, humble and knowledgeable ones out there. I have an amazing healthcare team around me and I am forever grateful for them.

 

Endo Warriors

Copy of Singleness Blog

At the end of 2014, I had been experienced chronic pelvic pain for nearly 4 years from Endometriosis. I was about to leave my job because I was too unwell. My marriage was broken and in disarray. I had gained 25kg’s. My self-confidence had plummeted and I had lost hope. It felt like I was at war with this insidious disease and it had one. However, I sought support from other women with Endo and found an incredible sisterhood – particularly online. As a result, I wrote a song about living with and fighting Endometriosis.

About three years ago I had the opportunity to be interviewed for a documentary. Last night I had the privilege to sit in a room with my fellow Endo Sisters and their supporters and watch the finished product, Endo & Us. I also had my first opportunity to sing this song, ‘Endo Warriors’ for an audience, as well as share some of my journey on the panel.

I will share the link to the movie when it’s uploaded at the end of the week 🙂

I promised I’d make the song available tonight, so, here it is 🙂

In the video you will see I messed it up midway through. I was assured it just added to the performance, mimicking real life 😅.

Endo Warriors

 

So many times, you’ve heard me complain
about my life, that’s devoured by pain
From my waking moment, ’til I fall asleep at night
Endometriosis consumes my life

But I’ve found some comfort, for there are women who share,
give understanding, kindness and empathetic care:

and we are warriors and we will fight together
We are sisters and will persevere
We’re united with hope in our hearts, wearing gloves of faith
we will not give up – as we fight
to put an end to endo.

Some symptoms have plagued us for years
and we’ve lost count of the times it’s caused tears.
Our bodies don’t function the way they should
and our relationships are strained, we’re so misunderstood.

But we’ve found other sisters, with whom we share,
give understanding, kindness and empathetic care:

For we are warriors and we will fight together
We are sisters and will persevere
We’re united with hope in our hearts, wearing gloves of faith
we will not give up – as we fight
to put an end to endo.

We’ll fight for the future
We’ll fight for a cure
We’ll call for more research
We’ll courageously endure!

For we are warriors and we will fight together
We are sisters and will persevere
We’re united with hope in our hearts, wearing gloves of faith
we will not give up – as we fight
to put an end to endo.

Purchase “Endo Warriors”

You can purchase an MP3 copy of “Endo Warriors” here. You will receive an MP3 file of the song e-mailed straight to your inbox within 3 business days.

A$1.99

Original Recording can also be listened to on my Soundcloud Account:  https://soundcloud.com/alexandra-ellen-mills/endo-warriors-1

30 Ways to Creatively Engage with your Illness

It’s easy to lose interest in life when you’re consumed with pain, depression and other awful symptoms. I’ve found engaging with my illnesses and experience creatively very empowering.

You don’t have to be the next Van Gough, Ansel Adams, Sylvia Plath, PewDiePie or Alicia Keys to be creative. I have compiled a list if ‘creative’ things you can have a go at, even if you think you suck.

By creative, I mean expressing yourself in an imaginative, artistic, innovative, inspirational, personal or unique way. You can ‘creatively engage’ with your illness by using any creative medium to:

  • process the pain and grief your illness has caused;
  • externalise overwhelming feelings;
  • articulate acceptance;
  • rest and relax;
  • create awareness about your illness;
  • reach out for support;
  • distract yourself for a while;
  • innovate a way to re-engage with an activity your illness has prevented you from doing;
  • encourage others to persevere;
  • show others they’re not alone in their illness;
  • remind yourself that you have hope;
  • share your story and experience;
  • reveal your resilience and strength;
  • ask for support;
  • project positivity;
  • express gratitude, and
  • break stigma.

Here is a list of 30 ways you can engage creatively as another tool to help you manage your journey with chronic illness.

morethanmanysparrows1. Go for a stroll in the park, a walk on the beach or simply sit in your sunny backyard and take a few pictures. Anyone can take a photo of the grass, a tree, a bird, the clouds and the sun on their phone. If you’re feeling a bit crazy, add your favourite filter.

2. Pick a photo you have taken, or download a free stock image and add the cheesiest quote you can find (or your favourite quote or verse from scripture.) You can use a photo editing program (like Photoshop or GIMP), a website (like Canva), or even Microsoft Word.

10383479_660858887316291_6416940749823705263_n3. Type and print encouraging statements with fun fonts to put on your wall.

4. Print your favourite family or holiday photos and make a collage. If you’re renting and don’t want to risk ruining the walls with blue tac, you can get a whiteboard or cork-board. I spray painted an ugly room divider to use as a giant pin board. …or you could finally scrapbook those holiday and baby photos.

5. Give colouring-in a try. The adult colouring in fad has taken the world by storm, have you tried it yet? Buy one from Kmart or your local bookstore, borrow your child’s activity book or find a picture to print through a ‘Google Images‘ search.

6.Communicate with pictures. Visualise your how you feel and what it’s like to live with your illness and paint or draw it.

244319_151690988233086_385182_o7. Experiment! Go crazy, painting, sketching and blending with different mediums. Most variety shops sell (oil, soft and hard) pastels, charcoal, (acrylic, watercolour and oil) paint and canvas pads. Experimenting is fun and can be a great distraction. On bad days I’ve been known to see how many shades of black, white and grey I can mix into one picture. When I’m feeling a bit more optimistic, I’ll play with colour.

8. I’m an awful drawer, but sometimes it’s fun to sketch. My favourite is creating stick-figure comics.

9. Too scared to try karaoke? You can now download karaoke apps onto your phone or tablet to take ‘singing in the shower’ to the next level.

10. Pick up the musical instrument you haven’t played in years. We all have a recorder hidden at the back of our wardrobe. My preference is the guitar – after 10 years I still can’t read music.

11. Write a song to share what it’s like having your illness and encourage others.

12. Don’t have a musical bone in your body? Try changing the lyrics to a song or nursery rhyme.

13. Create playlists for every occasion: to relax, feel like singing, angst, fight songs, etc.mr-g-gif (1)

14. Make up an interpretive dance – I can never go past Vanessa Carlton’s 1000 Miles.

15. Write a short story.

16. Create a character you can relate to and write a monologue, one-act play, radio script or a short film to explore and communicate the characters journey.

17. Start a journal/diary, blogging or (and you don’t have to edit and publish it for the world to see, but if you have a laptop with a webcam) a video journal. tumblr_n6eu9xazEC1s79tl2o1_500.gif

18. Write a poem – if you don’t ‘do poetry’ you could always start with a simple HaikuUntitled design or Limerick.

19.Write a letter to yourself.

20. Turn statistics, research and (accurate) medical information into an infographic.

21. Put on an apron and be a MasterChef by cooking your favourite cuisine or experimenting with a classic dish.

22. Create the next ‘Paralympic Sport’ – if there is a physical activity/sport you love, but can no longer play it due to your illness, come up with an adaptation that fits your physical
limitations.535131_752938168174916_8494518392625972808_n

23. Knit! You can never have too many scarves, beanies or comfort blankets. This beautifully adorable yellow teddy was made by Lee Miller.

24. Give your alter ego life and make a (sock) puppet.

25. If you’re a gamer and can code, create a game related to your illness – I dream of playing an arcade game called “The Angry Uterus.”

26. Design a personal tattoo (which is in no way a commitment to get a tattoo).

27. Make some (awareness) jewellery.

28. Design a t-shirt and wear your message. You can never have13064520_10153945092096329_3814720925769389373_o too many awareness t-shirts! (Although my mother would disagree.)

29. Get pretty and expressive, experimenting with makeup and nail art. This fantastic body art is by Kiley Inman.

30. Download a meme generator and amuse yourself.

If you can afford it, pick a hobby/skill and invest in some lessons. I’ve chosen to prioritise a half an hour singing lesson every two weeks into my budget. I then record the lesson so I can continue to practice between classes. It is both empowering and encouraging to see the progress/development of that still over time.

Ask others to get involved; sometimes it’s nice just to relax with a friend and have fun together. Sometimes laughter is the best medicine. I’ve also had friends with artistic talent sit down and teach me for no cost.

The most important thing to remember is not to be a perfectionist. It’s not about the finished product; it’s about engaging with your illness, disease or disability in a creative way.  Short-term, being creative will help you relax, decrease tension and give you another way to communicate. The long-term benefits of developing this habit is often insight, acceptance and healing.

I’d love to hear from you!
Do you have anything to share?
Do you have anything to add the list?
Have you noticed the benefits of engaging creatively with your illness?

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.

 

Five Years Ago, Today…

Five years ago today I woke up bright and early, headed to Bankstown Hospital. I waited in a small room with an elderly couple until the nurse called my name. I am tagged, weighed and dressed in a beautiful white gown, socks that didn’t cover my toes and what I can only describe as a cotton, blue shower cap. I confirmed by details and hopped into bed. I had been told not to take any painkillers when I woke up, so they checked my details a second time and gave me some IV-Panadol. Not long after they wanted to be really sure they had the right person and checked my details yet again before rolling me into the pre-op room.

Enter Gyno, “so, Alexandra, I see we are doing a cystectomy today.”
“Uh, no. The cyst resolved itself; you said you were doing an exploratory laparoscopy.”
He giggles “Oh, okay then,” as he looks up from his notes.

They confirm my identity one more time before the anaesthetist gently squeezes my hand, gives me the mask and asks me to count slowly down from ten.

10… 9… 8…


I woke myself up with my own screaming a few hours later. “Did they find anything?”

It turns out, they did. Here Annie will show you what the inside of my pelvis looked like before the Gyno removed the Endometriosis (versus a healthy one).

Annie and 1st Endo (1)

Hi!

As I left the hospital a few hours later, walking in the hunched posture my body had become accustomed, a nurse said, “walk straight, you’re all fixed now.” I believed her.

Even though the surgery wasn’t a cure and it didn’t take away the pain, I was finally validated. I was no longer mystically causing myself physical pain with my mind. There was a reason. There was a disease. It was my diagnosis day.

Today marks my 5 year anniversary since I was diagnosed and look how far I have come since! Praise God!

So it with a healthy mix of sarcasm, cynicism, gratitude and hope that I say…

Happy Endoversary, Alex!

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.

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

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