[ Background Story ][ Invisible Illness ]

Living with Invisible Illness

“Don’t judge a book by it’s cover”

How do you know if someone has an invisible illness? I often think about the quote above – and try to use it when on the outside looking in to other people’s lives, in the hope that they can also use it with me.

Looks can be so deceiving!

What you see on the outside, is completely different from what I’m dealing with on the inside.

I have several different medical issues, or syndromes, most of which are a topic society deems as unmentionable – despite millions of people having them.

Today I want to talk to you about what it’s like to live with an invisible illness – or five! BUT I do need to warn you, this is a long post…

You might think I’m being overly open…. They are my private medical problems after all!

And, you’re right – to a degree. Unfortunately for me I have more than one ‘syndrome/ illness/ medical issue’ that I live with, in fact I have about eight?! 🤔 But I will spare you the gory details about some of them. 😉

I know there are so many others out there living with terrible illnesses that are life threatening, and far worse off than myself. But that doesn’t negate the feelings or reality that I live through, or the many like me.

Some disabilities you can see... others you can't

The ones I want to talk a bit about today are experienced by millions of people world-wide, they are:

  • IBS (Irritable Bowel Syndrome)
  • Endometriosis
  • Secondary infertility
  • Chronic Pain
  • Peri-menopause

None of them are life-threatening, which of course is awesome. But they all present their own difficulties. This is what I – and millions of other people – have to manage, every day.

Three of them are women-only problems – but are still experienced widely – which is half the world’s population, so why the hell should we not talk about it?

ALL of them are an invisible illness.

You won’t know whether the person in the supermarket or walking down the street has any (or all) of these….

Spot the Difference:

In July 2019 we went on a trip back to the UK for 3 weeks, to visit family and friends. It was a wonderful trip – but at the same time, it was extremely stressful (for me.)

Below are two different photos of me, taken a few days apart. In one of them, I’m feeling absolutely fine and happy – in the other one, I’m feeling horrendous and in a fair bit of pain.

July 2019 Photo 1 Am I in pain?
Photo of me in pain_invisible illness

Apart from the fact I’m wearing (a bit of) makeup in one and not in the other, can you tell in which photo I’m in pain?

*Answer at the bottom of the post. 😉

What’s my point?

Normally, I totally ‘wear my heart on my sleeve’ – or rather, show all my emotions/ thoughts on my face. (Sometimes this is good, and others really frustrating – I definitely don’t have a poker face!) 🤦‍♀️

However, when I’m not feeling well – or more specifically, when I’m in pain – I shut down.

I find I can’t focus on much else except what is going on with me at that point in time (definitely not the time to get me to make a decision – about anything!)

I might grimace, or I might just be moving very slowly – much like an old woman. Looking at me, you might think I have a sore leg, or maybe even back pain.

To be honest, it’s hard to walk at all. It’s also hard to sit, and even more difficult to carry on a conversation with someone. Though, unless you’re in my immediate family (or I know you very well), I probably won’t tell you what’s going on. I will nod, smile – laugh even.

I’m probably not very good at listening to what you’re actually saying, but I will try. It’s likely I’ll take some pills from the pack I alway have handy in my bag – I look like a walking pharmacy! I might also excuse myself to go to the bathroom – and take some time….  Most of the time this is because it is one of the few places I can ‘escape’ to, breathe and focus my thoughts (and practice my mindfulness/ flexible pain management.)

For me, pain is something I’ve lived with now for a very long time. There is no ‘miracle cure’. There is no ‘magic pill’. BUT there is management. Pain (as with many invisible illnesses,) is something that has to be managed, usually in a multi-factorial way e.g. with pills, heat packs, focussed/ actionable thoughts, massage, lying down – whatever works for the individual.

My Story:

I was diagnosed with both IBS & Endometriosis in my early teens. I’m now 43. So I’ve dealt with the symptoms (predominantly agonising pain) most of my life. Pain is exhausting. It really does take all your energy and focus to deal with it.

After putting up with IBS & Endometriosis for 20+ years, I suffered from secondary infertility in my early thirties. It turned out our daughter had literally been a miracle child, and I was already in premature ovarian failure. This also meant I was likely to go through perimenopause a bit earlier than the average woman. It wasn’t going to be especially early – likely when I was 42-43.

I was not able to undergo IVF, as I would never produce enough eggs. I only had two other options to having another child (using ‘help’): one was “intra-uterine insemination (IUI)”, and the other was to have eggs donated. There are ethical issues with the second option and it wasn’t the one for us. However, we did try IUI.

Unfortunately, that’s when my problems started (all over again).

Personally, I think the drugs that were used to help me prepare for the IUI are directly related to my endometriosis coming back severely, though no doctor will ever admit to that (as there’s no proof.)

After two cycles, I was so sick – and in pain 3 weeks out of 4, during both ovulation and period times, that I had to give up. During the year or two that followed, we tried several other things – though obviously none of them worked.

By 2013 – when my daughter started school – I’d had two laparoscopic surgeries for an endometrioma + endometrial tissue being removed from places where it shouldn’t have been: my bowel and ovaries (and having to have one ovary removed completely – which of course further diminished my hopes for another child).

The Effects:

I had to eventually come to terms with the fact that I would never be able to have another child and see a different mixture of myself & my husband in another human. Once again, I started on medication that would stop my endometriosis and the ongoing pain – the combined oral contraceptive pill.

I really struggled. I was experiencing the grief and loss of someone who never existed, but the emotional toll it took was still huge…. I didn’t ‘just want a sibling’ for my daughter. But I wanted that chance to meet another little person – who would be a different combination again. With my husband being a doctor, we knew all too well how destructive the process of trying to have another child could be – to our relationship and our little family, so I did try to ‘move on’. It just took me way longer than I expected. I saw psychologists, wrote down my thoughts, talked about it with family etc. One of the things I found most helpful was learning to acknowledge the (emotional) pain I was feeling and allowing myself to feel the way I did – that it was “OK” to feel that way.

Another thing I found really hard, was finding out that other friends (and family) were pregnant. Obviously this was amazing for them – a time to celebrate! But I still felt gutted. “Why not me?” would always go through my head.

This was happening pretty frequently – as those around me decided to have their second, third (and in some cases, eventually their fourth) kids. Women at school pick up would say “I think I’ll have another child” – then, hey presto! Another month or two later they would be pregnant.

During all this time, despite being on the pill, I was still experiencing pain ‘episodes’ quite frequently. The pain was alway in my ‘tummy’ area, though could be in a few different places. The main area was either in my pelvic region (endometriosis related) or left hand side of my tummy (IBS) related. I also had chest pain (related to reflux – or Gastroesophageal reflux disease (GERD) – which I also have) and sometimes – just to mix it up, I would have a shooting pain going right up the middle! 😱

When ‘pain’ becomes Chronic

My husband started talking to me about “Chronic Pain Syndrome”. This is when pain continues for 3-6 months past the initial cause.

Basically, Chronic Pain changes your brain functionality – and the pathways between your brain and your nerve endings get a bit mixed up. That’s often why doctors talk about pain being related to your brain – BUT it doesn’t mean it’s not ‘real’ or that you’re making it up! Pain is pain. If it’s there, it’s real. There are definitely different levels of pain, but no-one else can/should ever judge/tell you whether you’re in pain – or not!

I talked to my own GP about it (no, my husband is NOT my doctor – that would be unethical), and I got referred to the Chronic Pain team at Waitakere & North Shore hospitals. I saw a Physician, a Physiotherapist and went through what was then called a ‘mindfulness’ course with a Psychologist who has specialised in pain therapy.

[NB Since then, the word ‘mindfulness’ has been used in so many other instances and for other reasons, likened to ‘meditation’ – which it’s not, that the course is now called ‘Flexible Pain Management’.]

All three areas are combined  to manage the pain long term – and hopefully over time, reduce the occurrence – or your reaction to it. It’s not about ‘fixing the problem’ (because, unfortunately, nothing can). I was put onto a combination of medications to help with the pain – both long acting and short acting tramadol plus various other things. Most of the pills I was on gave me side effects – sometimes so bad I’d have to take another pill to counteract it. I was also given physio exercises that I had to do daily, and attended an 8 week course on learning about ‘mindfulness’ – or rather, how to separate yourself from your thoughts – and your reactions to those thoughts.

Many people go through these courses. Most are looking for that ‘magic pill’ that will make it all go away, and don’t finish the course. It’s pretty tough to come to terms with the fact that nothing can be done to ‘fix’ you. However I did find the course (and the doctors) really helpful, and tried to keep up the practices regularly. It’s just that as time goes on, it’s easy to forget…

Later changes

Around the start of 2019, possibly the end of 2018 (it all blends together), I started having more and more episodes of pain, started waking up in the night absolutely drenched, not sleeping well (just randomly waking up 2-3 times per night, or not being able to fall asleep in the first place) and I also had brain fog. By this time I had weaned myself off the tramadol (and didn’t like taking them due to their side effects on me), so I was reluctant to go back.

These things didn’t all happen at once though, and it took me several months (and a few discussions with my husband and GP) to work out what was going on.

I was 42, and going through perimenopause – as had been suggested about 10 years prior.

Over the following months, I felt fairly horrendous, but some of my ‘symptoms’ weren’t the standard ones listed relating to perimenopause. Some days I’d wake up feeling absolutely fine, and other days, I’d wake up barely being able to see/ stand/ function – and after getting my daughter off to school, I’d have to go back to bed (that’s what I called the brain fog). There seemed to be no pattern, so planning work/ home/ life became difficult.

Bizarrely, my senses all heightened. I’ve always been ‘sensitive’ to smells, noise, bright lights etc (and also had a phobia of heights) – but it all suddenly got much, much worse.

I would find I’d want to vomit from the smell of someone’s perfume or deodorant. Walking though department stores or duty free at the airport was particularly hard! Or I’d find driving at night more tricky – all the cars oncoming headlights seemed so much brighter!

Then during our trip to the UK in July 2019, I started experiencing vertigo in relation to my height phobia – which was SO much worse all of a sudden, and I also found loud noises to be amplified if I was having one of these ‘negative experiences’.

HRT was mentioned. We discussed the positives vs the negatives etc… then my GP told me it wouldn’t work. The pill I was on is actually stronger than HRT. Theoretically, I shouldn’t be having any of these symptoms!

I was referred back to the Pain Team, and went to the pain management course again. It was great to have a refresher! And it really helped me to focus – it’s just hard to really make an impact when your emotions are already on a rollercoaster – without your consent. We discussed my other options. Sometimes I’d be really sad – for no apparent reason, or react to some sad news in a really bad way. Other times I would feel suddenly angry, frustrated – and lash out at my family (though not physically). Then other times I was fine. I decided to start on anti-depressants, to even out my mood swings and hopefully help to level my emotions….

It worked! My emotions levelled out, and my pain also reduced! Whoop! 🥳

Unfortunately it didn’t last that long. After another few months (by this time it was the start of 2020) the night sweats were back, lack of sleep and then the pain episodes started up again. We’d worked out by this time that a lot of my IBS/ pain is related to ‘emotional stress’. So I wasn’t being ‘stressed’ in the typical way (it wasn’t work or home related).

The antidepressants were definitely doing at least one good thing – helping to stabilise my emotions. However I also started putting on a lot of weight (for me) – where it’s most unhealthy – my middle section. This caused me further discomfort – and pain, and was something I really didn’t want. So after about a year of being on them, I decided to come off. When I tried to stop them quickly, I felt horrendous. So had to wean off them slowly, it took ages! However, I did start another ‘natural’ pill around this time (Remifen – containing black cohosh, which has 60+ years of scientific research behind it) and it stopped the night sweats – hooray! I don’t know how long it will last for, but it’s all good for now. 🤞

I now know that my emotions will still swing around – I just have to take a few deep breaths, and try to be OK with it. 🤷‍♀️

Then vs Now

It’s now nearing the end of 2020 – and what a strange year it’s been. The world was hit by a pandemic at the start of the year (slightly different timing for different countries). We’ve been through a major lockdown, then those of us in Auckland went through another one. We’ve all felt the stress of it, and that has come out more in some than in others. There is a lot of fear around the disease (it does sound like it can be awful, and also that it can have long lasting, serious effects on your system.)

But life goes on.

Apart from shopping, home-schooling, stopping work for 2 months and the general stress of what’s been happening, my life was not too different from normal. I’m an introvert who works and exercises from home and doesn’t (generally) go out or socialise a lot, so the staying at home thing didn’t impact me too greatly.

However I know many others for whom lockdown was extremely stressful, Which is why we were all told to be kind, be compassionate and look after one another. This should really go without saying all of the time, as you never know what is going on inside someone else’s head (or body.)

Despite the challenges I experience (sometimes daily), I have a good life! 🥰

I have the most wonderful, caring, supportive and loving husband and daughter – and we are a happy little family of 3. 👨‍👩‍👧 It did take me a while, but I have come to realise that there is so much more you can do when you ‘only have one’. It has meant we’ve been able to travel more widely and have holidays in all sorts of different countries (until this year!) 🌍 Even with Covid and the lockdowns, we’ve finally managed to cross off a couple of places in NZ that we’ve wanted to go to for a long time (Kaikoura & Nelson). ❤️ 🇳🇿

My life is very much like any other mum’s – busy with the activities of my child, managing the house and garden and working in my wee business. Because health is so important to me, I do try to have me-time, as well as doing fun things – like singing in a choir, doing adult hip hop classes (lots of hilarity 🤣), finally doing a ring making course, catching up with friends – and trying to fit in exercise (when possible).   It’s just that in between all of that, I’m also managing my symptoms, and it’s definitely a juggle! 🤹‍♀️ Sometimes all the balls drop, and I have to just stop. Other times – even I’m surprised at how I manage to keep them up in the air. 🤷‍♀️

I do love to help others – mostly those that can’t speak for themselves, or those that are struggling (for whatever reason). Over the years I’ve been very involved in several different volunteer organisations – probably the longest was for Plunket when my daughter was young. Unfortunately the situation I was in, I got totally burnt out (though it didn’t help that it was through the ‘bad’ years!) So I’ve been a little wary of becoming too heavily involved in one particular organisation again…. But, for the last several years we have donated towards, and raised awareness of, endangered animals. I’m really proud to have become a financial supporter of Forest and Bird through my small business – donating 10% of my profit to them. 💚

Some definitions & facts

Irritable bowel syndrome (IBS) is a group of symptoms—including abdominal pain and changes in the pattern of bowel movements without any evidence of underlying damage. These symptoms occur over a long time, often years. IBS negatively affects quality of life and may result in missed school or work.  Disorders such as anxiety, major depression, and chronic fatigue syndrome are common among people with IBS.

  • Worldwide it’s estimated that 10-15% of the population has IBS.
  • Most people with IBS are under the age of 50. But many older adults suffer as well.

Endometriosis is a common inflammatory disease estimated to affect 176 million girls and women worldwide in their reproductive years, and 120,000 in New Zealand. It is a disorder in which the tissue that normally lines the uterus grows outside the uterus, and can be found on the ovaries, fallopian tubes or the intestines. The most common symptoms are pain and menstrual irregularities.

Approximately 1 in 10 women in New Zealand will have endometriosis. In most cases, there can be symptoms including period pain, pelvic pain and sub-fertility or infertility. In other cases, there may be no obvious symptoms and the diagnosis is made during the course of medical procedures for other reasons.

  • 10% of women worldwide have endometriosis – that’s 176 million worldwide.

Secondary infertility is the inability to become pregnant or to carry a baby to term after previously giving birth to a baby. Secondary infertility shares many of the same causes of primary infertility. Although the word ‘infertility’ is often associated with those who are childless, secondary infertility is as common as primary infertility. The lack of mainstream recognition of secondary infertility may be a reason for a lack of sympathy and understanding towards it.

Primary ovarian insufficiency — also called premature ovarian failure (POF) — occurs when the ovaries stop functioning normally before age 40. When this happens, your ovaries don’t produce normal amounts of the hormone estrogen or release eggs regularly. This condition often leads to infertility. It can also lead to early on-set perimenopause.

  • POF affects an estimated 1% of women under the age of 40

Perimenopause means “around menopause” and refers to the time during which your body makes the natural transition to menopause, marking the end of the reproductive years. Perimenopause is also called the menopausal transition. Women start perimenopause at different ages.

Throughout the menopausal transition, some subtle — and some not-so-subtle — changes in your body may take place, including: irregular periods, hot flashes, sleep problems, mood changes, vaginal dryness, changes in sexual function, breast tenderness, fatigue and headaches.

Chronic Pain Syndrome (CPS) – unlike acute pain, this condition doesn’t go away after your initial injury or illness has healed. When you hurt day after day, it can take a toll on your emotional and physical health.

“Persistent pain” is extremely common and is increasing. It is defined as pain that persists for at least 3 – 6 months. (About 25% of people with ongoing pain will go on to have CPS).

When you have suffered pain for a long time, your nerve pathways (& ‘fright/ flight mode’) get a bit muddled up and you can be in agony for no obvious reason.

  • Chronic Pain affects 20.5% of the world’s population. It’s estimated that more than 1.5 billion people worldwide are affected by chronic pain. 2. Chronic pain affects 20% of New Zealanders.
  • Around 80 million adults in Europe experience chronic pain. According to the statistics, it’s estimated that chronic pain accounts for the loss of 500 million hours of work a year in Europe.

What NOT to Say to Someone With Chronic Pain:

  • You don’t look sick.
  • There’s always someone worse off.
  • I hope you feel better soon.
  • Have you tried…?
  • It’s all in your head.
  • Does that condition really exist?
  • It’s mind over matter.
  • At least you don’t have to go out to work!

Going forward

So WHY am I telling you all of this?!

I don’t want your pity, and I don’t need your suggestions/ solutions that will ‘make the pain go away’. (Most likely I’ve tried them all before.)

There are NO miracle cures for chronic pain.

Invisible Illnesses do NOT define someone’s life.

I just want to make you AWARE of what some people go through, sometimes on a daily basis.

Invisible illnesses are not really talked about – and yet about 1 in 5 people have them – so you most likely know several people that do…

Do you know who they are?

Unsurprisingly, this has taken me a long time to write. I’ve opened up my life – or a small part of it – to share with you, in the hope that you can see a different perspective.

Please don’t judge others on their appearance. Who knows what is going on in their life?

Always be kind. Always be compassionate. Always – try to see someone else’s point of view.

If you’re a guy, and you got to here – thank you! 🙏🏼 You might be thinking this does not apply to you…. How wrong you are! Not all women experience perimenopausal symptoms – or are too affected by them. But when your partner starts to go a bit crazy, with emotions running wild, sleep problems, night sweats and complaining about feeling awful, it will definitely impact your life as well as theirs. If they have any other issues on top of that, your life might look quite different for a while. Most women might not talk about what’s going on or how they feel… Please be supportive.

I wanted to share a couple of my favourite quotes (the 3rd is the one above ‘don’t judge a book by its cover’ 😉) – that I feel directly apply:

“You must give up the life you planned, in order to have the life that is waiting for you.”  ~ Joseph Campbell
“Success isn’t about how much money you make. It’s about the difference you make in people’s lives.” ~ Michelle Obama

What’s this got to do with jewellery?!

In 2008, I became a full time mum. Prior to that, I had worked full-time in various places both in NZ and the UK. However all through my working life I had times when I had to take days (sometimes even weeks) off sick.

Over the last 12 years, I have unfortunately been very unwell (at times) – and it’s quite likely I wouldn’t have been able to sustain a ‘proper’ job over this time. I have had to learn to manage my pain, and everything that goes with it.

By the end of 2013 I had got hooked on this jewellery-making thing. I loved to make new creations – and I loved it even more when they made other people happy! I also started to create new jewellery from pieces that had been passed down to me – from my Grandma and Great Aunt. It meant a lot to me, to have something of theirs close to my heart, but in a setting that I liked.

I’m not a big (daily) makeup wearer. But I found it easy to pop a few pieces of jewellery on, add a bit of colour – and give my confidence a boost, when going out. I thought it might do the same for others too. I easily found inspiration through the natural environment around me. I seem to have so many ideas, so coming up with different creations has not been too difficult (so far!)

Working from home meant I could be the full time mum I wanted to be (most of the time), as well as being the kind of boss I needed. I can organise my time around how I’m feeling. Generally, if I’m having a bad day – I can take the time out to deal with it, which I definitely couldn’t do if I worked for someone else.

Curlicue NZ also gives me something else to focus my energies on. I’m naturally a project/ planning kind of person – and always have a long list of ‘things to do’. Wearing ‘all the hats’ in the business has allowed me to learn so much and do so many different things! Sometimes it has been too much, and I’ve had to learn to pull back – it’s really not the end of the world if things don’t go to plan. (I’m not very good at that – I like to know what’s coming up!!)

Most of all, it has allowed me to meet you – and help you find the perfect gift for your loved one, or treasure to keep for yourself.
To me, that’s what makes it all worthwhile. 😁 ❤️

Koru Heart Collection with stud earrings, heart pendant, heart ring, heart bangle and love heart earrings on green leaf background
Koru Heart Collection
Photo of me in pain_invisible illness
*This is the photo of me in pain, did you guess?
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