Chronic illnesses are often misunderstood, discredited and invalidated, even by medical professionals. Knowing that something is wrong yet consistently being told that you’re over-reacting, imagining things or just not trying hard enough to get better is incredibly demoralizing and damaging to a person’s mental health, making receiving a diagnosis a steep uphill battle that can appear impossible to win. I’ve had first hand experience of this, battling doctors for years to receive support for my endometriosis.
Endometriosis is a chronic menstrual disorder relating to the growth of cystic womb tissue outside the womb, causing severe abdominal pain in addition to other symptoms such as heavy menstrual bleeding, nausea and severe bloating. After starting my period at the age of nine, the endometriosis began to rear it’s head when I was 12, and – as is the nature of a chronic condition – it hasn’t left me alone since. Every month, I dread my period, and wonder whether I’ll be let off easy with only a few days of crippling pain, or if I’ll be bleeding for twenty straight days this time.
Of course, my parents knew from the moment my periods starting interrupting my perfect school attendance that something was wrong. They were immediately sympathetic and supportive, taking care of me while I was unwell and taking me to the doctors regularly, insisting that something was going on. This level of pain couldn’t just be explained away by growing up, otherwise every girl I knew would be experiencing the same problems.
The medical professionals did not seem to listen, nor care. We were told I’d grow out of it, that it was just hormones, and to take paracetamol. When that didn’t work, they gave me mefanamic and tranexamic acid pills. When they barely touched it, my mum dilligently did her research and asked why they didn’t just put me on hormonal birth control if it was all just caused by hormones, as I was fifteen years old and it was said to help balance such problems. I’ll never forget how mortified I felt when the GP turned to my mum and said, “We don’t like to give that to the little girls. It could influence them to do things they shouldn’t be doing”.
So thanks to this ridiculous assumption, the little girl had to wait to turn 16 to recieve medical help, when finally the process of starting birth control began. Only to be told, I needed to be tested for a hereditary blood clotting condition first. More months passed. The test was positive. My options were immediately sliced in half, but finally I was prescribed the mini pill.
It helped. Slightly. I struggled to tell whether it had actually helped or whether I was just forgetting how bad the pain had been before. Either way, it wasn’t any kind of fix. This is characteristic of a menstrual disorder, and by now I had been calling my condition endometriosis for years, because I had every symptom and having a name for my ailment made it far simpler to describe to people and be understood. I continued to insist to my GP that nothing was helping, and at eighteen I was trialled on the contraceptive injection instead of the pill. The sudden hormonal change was so jarring for my body, that for three months I was suicidally depressed, and my periods actually worsened.
It may be worth mentioning now that through it all, all the years of begging to be helped and taken seriously, my condition was regarded only as ‘dysmenorrhea,’ essentially belittling it as bad period pain. As a result, any complications of my disorder were often written off, and specialists were unavailable to me. I waited fourteen months for a gynecologist appointment, during which time, I suffered an agonising rupture of a malignant ovarian cyst. The day that happened, I waited nine hours to be spoken to by a doctor, who then refused to acknowledge my understanding of what was happening to my own body and proceeded to tell me over the phone that I was likely having a miscarriage. (I was not pregnant and this was wholly inaccurate, but I couldn’t imagine hearing that over the phone if I was.) I was forced to take a pregnancy test upon arrival, and once that came back negative, no further tests were done besides stating that it probably was a ruptured cyst, but that I was being sent home with nothing but codeine. I had maybe never felt so invalidated.
Right as I was losing faith in medical professionals, I was finally given the long awaited gynecologist consultation.
During my appointment, my concerns were heard and met with swift testing. An ultrasound confirmed that my ovaries were cystic, and a laparoscopy was booked to finally confirm my loose endometriosis diagnosis after eight years of suspicion. During that laparoscopy, endometriosis was found and excised, along with a cyst which was causing ovarian torsion; and I was finally vindicated. The source of my pain was found at last, and the name of my chronic illness was confirmed. For me, it’s like how knowing the true name of a demon gives you power over it; I now knew precisely what I was fighting and how to do so.
The funny thing is, that many people will still claim that I’m exaggerating my condition for attention, or even getting surgery unnecessarily. To them, I would suggest that they go and undergo the same procedure, and see whether it was worth the week of additional attention from your loved ones (who, by the way, will primarily be running around doing the essentials for you while you’re unable to sit up without crying.) Was it nice getting flowers and having meals brought to me in bed? Yes. Was it also humiliating having to be helped to the toilet by my boyfriend and being dressed by him even though I hadn’t showered in a week? Massively! Would I have gotten the operation if I had any other choice to improve my quality of life? Absolutely not.
There are many narratives that every chronically ill person has to contend with, but my least favourites are the contradictory ‘you’re doing it for attention,’ while simultaneously demanding what has been dubbed ‘pity-porn’ as evidence of sickness. We’re expected to raise awareness of our illnesses, educate people and expose our vulnerabilities, to prove why we deserve help and to make other people feel grateful for their good health. But, we have to do this while packaging our struggle into a neat bundle, never complaining too much, and never making other people feel too uncomfortable. The reality is, chronic illness is uncomfortable, and sometimes even unsightly.
Even now, many would rather compare my pain to life-threatening illnesses or visible injuries than accept that they are qualitatively different conditions. Even if someone else is suffering more acutely than I am, I’m still fundamentally suffering; but the cause of my pain is invisible, internal, and incurable. My endometriosis was excised, but even with a mirena coil now inserted to stave off future growth, it will come back. I will always have Endo. The only notable difference for me post surgery so far, is that having scars visibly on the outside shows doubters just a fraction of what my inside looks like.
That’s the trouble with chronic illnesses. Getting your diagnosis can seem like the hardest part of the fight, but once you reach the peak of that hill, you realize there’s an entire mountain range on the other side. Knowing what is wrong doesn’t guarantee a solution. In my case, I’m extremely lucky that my skilled surgeons were able to excise so much endo and cystic tissue, that once I’m recovered my symptoms might be eased for a long while. In the case of my best friend Emma Calder though, it’s not as simple as being cut open and extracting the bad stuff.
Emma has suffered with a dual diagnosis of Chronic Fatigue Syndrome (also known as myalgic encephalomyelitis, or ME) and Fibromyalgia for six years now, and like me she had to fight to be taken seriously enough to be given her diagnoses, enabling her to seek the appropriate specialist help. ME is a long term condition resulting in extreme tiredness, brain-fog, muscle and joint pain, flu-like lethargy and headaches, while fibromyalgia causes widespread musculoskeletal pain by impacting the way that the central nervous system processes sensation signals.
Emma and I have known each other since Year 7, and became best friends a year later. She is a bright light in the lives of everyone who knows her, with a brilliant mind, a heart of gold and an infectious smile. During school she loved to learn and was extremely bright, especially fond of reading and writing, but she could also shine on stage when she sang, danced and acted. But soon, I and our other friends had to watch bouncy and bubbly Emma slowing down as her body began to betray her. At only fourteen years old, she was too exhausted to walk for extended periods or to sit through exams, and by the time she was in college her pain was so severe that it would keep her from sleeping. I remember talking to her about my Endo pain as I felt she was the only person who would understand what that is like, and hearing about how much she struggled just to perform basic daily tasks because of her condition. While in education, we often vented about how we felt trapped in our respective situations, and she’d support me no matter how much she was struggling too.
I watched as our school and college make false promises to help her so she wouldn’t be held to an impossible standard while fighting disabling conditions, then drop the lifeline as soon as she grabbed it. While I could go a week without my Endo flaring up, Emma had to plan her life around predicting good days and bad days, often in vain. They could be triggered by exertion, or by seemingly nothing at all. One day she’d be laughing and singing Disney songs, and the next she’d be crying from pain or hardly able to stand up. My bright and talented friend ultimately received no compassion or support from a college she could have represented as a success story one day, who instead gave up on her, leaving her to drop out. I often wonder if she would have been treated as unfairly if she struggled with a different type of illness.
Still, that didn’t dim her light. Despite countless attempts at treating her condition to little avail, Emma still proved them wrong. She started writing poetry as a means of coping with her ailments, and though sheer determination she published an inspiring book of poetry titled ‘Off My Chest,’ when she was only twenty years old.
Off My Chest is a brutally honest collection of modern, contemporary poems, that describe the six year long struggle that Emma Calder has faced, to try to get support from ‘the system’. She describes the trials and tribulations, the frustrations and unfairness that she has been faced with to try to find a remedy to the pain and suffering she experiences due to her illnesses. She details her experiences, ‘warts and all’ of her life over the past four years. From taking her GCSEs to trying to find a medical professional who is interested enough to help her with her constant, chronic symptoms. A truly inspiring collection of poetry and verses that truly ‘tells it like it is’.Olympia publishers
I might be biased as her best friend, but ‘Off My Chest’ is one of the best poetry anthologies I’ve ever read. Whether it’s from being there to witness her difficulties over time personally, or applying many of her poems to my own experiences with Endometriosis and Anxiety, I found myself with tears in my eyes several times while reading Off My Chest. Her poems are somehow both incredibly polished and incredibly raw, ranging from prose to rhyming verse, to short-form, to empowering lyrical pieces which I could even see being produced as raps!
Emma did her family and friends proud with this one, but she also did the chronically ill community proud, raising awareness of her conditions while never once bowing down to the narrative that people with disabilities should provide some kind of toxic positive inspirational content at all times. Instead, she’s brutally honest in a way that I’m sure many people will connect with. She doesn’t hide from the fact that being chronically ill is horrible. And yet, she describes herself as a cautious optimist, and I’d say this perfectly encompasses the message of her book; that there is strength in pushing through the pain and strife in baby steps, even if you have to slow down and make adjustments for yourself.
Emma kindly agreed to answer a few questions and give insight into her new book – which can be purchased by clicking the link at the bottom of the article – as well as offer some great advice for other chronic illness sufferers.
First off, a massive congratulations for getting published at only 20 years old! How does it feel getting to hold a physical copy of your book in your hands?
It feels like I can breathe. All of these years I’ve been holding my breath. Everything I am and everything I hope to be is in this book. It is a reminder of my troubling past, my uncertain present, and paves the way for my future. It feels like the end of one chapter and the start of another.
I know that you’re a big reader and that you love to write, but do you have any plans for future publications? Any fiction or more poetry?
I don’t plan to do anymore poetry but I do plan to continue writing. I’ve told my story and there are so many under-utilised stories out there. So many perspectives to explore, so much more to learn. I am currently writing another book that I haven’t finished quite yet. I hope to find a home to publish that. We’ll see; time will tell.
What’s your favourite poem in ‘off my chest’ and if you care to share, what’s the story behind it?
‘Vincent Van Gogh’ or ‘Bon Voyage’. I can’t pick. They both hold different meanings. ‘Vincent Van Gogh’ is the perfect reflection of my feelings. All my throughout my journey with chronic illness, people have asked me how they can help me. How am I meant to know that? They’re the one with the degree! If I knew what could help, I wouldn’t be there. That poem is all of the frustrations in one poem. ‘Bon Voyage’ is the most well-written in my opinion. That was the poem I looked at and couldn’t believe I had written it. I look at that poem and I feel pride. I stand by the message; I don’t think people should search for their shortcomings. It’s insulting to those who don’t have a choice.
What do you wish people understood more about life with chronic illness?
That it is a real illness. You may not be able to see them but they are real. Don’t be insulting and say it’s all in their head. It’s much more complex than that. Just because you don’t understand it doesn’t mean it’s not real. Chronic means there is no cure. They are ill every day for the rest of their lives. Some days are worse than others but that doesn’t mean on a good day they are suddenly better. There is no quick fix so don’t suggest ill-informed, ridiculous remedies. It’s not helpful. And don’t compare people with the same illnesses; everyone has a different experience. They’re not lying. You’re being too close-minded.
Do you have any advice for people who are struggling to get a diagnosis for their symptoms?
Don’t take no for an answer. You know your body better than anybody; if you know something’s not right, something’s not right. You’re not overreacting, you’re not being too dramatic. It is not high maintenance to take care of yourself. I won’t lie and say it doesn’t sting when a doctor, the one person you want and need to believe you, tells you that you’re lying. Nonetheless, we must practice patience and resilience. Someone will listen. We just have to find them.