Being open about your life isn’t easy, especially if there’s a stigma involved. However, it’s necessary. How else do you break a stigma, if not fearlessly sharing the parts of your life that you’ve been taught by society to keep hidden?
You may be wondering what the point is. If some people don’t understand, don’t care, or simply judge, why would you want to share that part of your life? Whether it be your struggle with mental illness or physical illness, the battle is equally harsh and personal.
Well… There’s a reason a lot of people have a huge lack of understanding about so many illnesses, and it’s because WE are scared to speak out about it. Yes, some people will judge. Yes, some people will get tired of you complaining. But, to put it simply… Fuck what they think! The world isn’t meant to be all light all the time. We are not only valuable when we smile or when everything is going well.
If you ask those people who are judging, those people who are getting ‘tired’ of hearing you complain, I bet you any amount of money that they’re spending their days complaining about their own issues, that are simply different from yours. Therefore, they can’t understand. That is not your issue, it’s theirs. That shouldn’t stop us from trying to raise awareness, trying to build understanding in a society where there is very little.
So many of my blog stories have been hard for me to write, and I have no doubt they have received quiet judgement. But more than any judgement I’ve received has been some amazing feedback from people saying how much they needed to hear what I’ve written about. And those comments, knowing I’ve helped someone in a similar situation, means everything. It’s the whole reason I’m doing this.
I had one friend share her story about diabetes. She was worried at first and wasn’t sure if she wanted to put her name to the story, but then overcame her fear and did it anyway. She said what a release it was. And because of that, not only has she possibly helped other people, but she also helped herself.
So I’m putting a call out to everyone who has struggled with a chronic physical or mental illness to come forward and share your story on my blog. Anonymity is completely fine and completely understandable if you prefer. But share your raw story for the world to hear, for the people who have had similar experiences to you. So they know, and you know, that we are not alone in it.
Help me to raise awareness and break the stigma. ❤
If you want to include both my battle with endometriosis and with an autoimmune condition, I have been fighting my body, and medical professionals, for ten long years. Ten years of chronic pain, chronic illness, and chronic anger towards my body for never giving me any relief.
With Endometriosis comes not only extremely painful periods, but also back pain, urinary tract infections, diarrhea, constipation, nausea, extreme mood swings, pelvic pain all month long, fatigue, general malaise – and the list goes on and on.
With my autoimmune condition comes chronic fatigue & malaise, severe chest pain & palpitations (occasionally landing me in the ER,) tachycardia, panic attacks, muscle pain, joint pain, chronic migraines, brain fog, muscle weakness, rashes, and just a general lack of discomfort and feeling like shit to be honest.
So, how does one love their body, when their body only ever causes them distress and discomfort on a daily basis? It’s not easy – it usually feels impossible. I spend so much time pushing through the pain and illness every day, that I’m left feeling extremely pissed off and frustrated with my body. Why can’t you be pain free for just one day? Why can’t you let me live my life? Why do you have to take everything from me? Why can’t you give me a break?
One day it occurred to me, as I looked at myself in the mirror, that I had started feeling separate from my body because I spent all of my time fighting it. It was no longer a part of myself, but instead a monster that I had to slay. That one thought shocked me. This sounds ridiculous, but I stood there and had to touch my arms, my face, my neck, my stomach, and my legs, just to feel connected to my own body again. To remind myself that it’s a part of me and that I still need to love and care for it.
So started my self care regime. Pilates twice a week, higher quality skin and hair care, meditation, walking every day, and most importantly, attending each doctors appointment with the goal to fight FOR my body, rather than against it.
It’s not really enough just to dutifully take our medications, just to push through pain and deal with the frustration and anger, to let ourselves hate the very part of us that keeps us alive and who we are. Our broken bodies aren’t actually stopping us from living our lives – they’re giving us the ability to keep living it, even if limited.
So keep caring for your body, no matter how broken it may seem. Stay connected to it and keep loving it. Nobody can love and fight for our bodies like we can. ❤
I don’t trust my body – not even a little bit. I don’t know how I’m going to feel at any given moment. It’s unpredictable, to say the least.
Now, you might be thinking, “isn’t that the same for everyone?” To some extent yes, but not like this. I’m sick every single day to some degree. Maybe it will just be mild fatigue and a lingering headache, maybe my chest pain will get so bad I’ll end up in hospital, maybe my fatigue will leave me bed ridden… I have absolutely no idea.
I can’t make plans, not really. I accept plans with the usual “but it all depends on how I’m feeling on the day.” Because, let’s be real, I have NO idea if I’ll be able to make those plans or not. In fact, I’d say it’s more likely that I’ll have to cancel. Which fills me with no end of anxiety and guilt.
I love my friends, I love my family, I love my boyfriend. I WANT to spend time with them – and yet, my body doesn’t always let me. My Pilates instructor even took me off weekly lists, and assumes I’ll just turn up when I’m able.
This is frustrating for everyone, including myself. ESPECIALLY myself. I’ve seen friends distance themselves, stop inviting me anywhere, and just lost friends in general. They’re not bad people, they just didn’t understand and took my flakiness for not caring, and I don’t blame them one bit. I understand that chronic illnesses are hard for people to understand unless you’ve been through it, I really do. BUT, it doesn’t make it hurt any less.
This is the social battle every person with a chronic illness must go through at some stage. Do we go to that social event, knowing that we will pay for it tomorrow, and probably for days to come? How do we pick and choose which social engagements to go to each week, how can we spread them out? Why, oh why, can I not just have my body back so that I can go to ALL social engagements and not have to lose sleep over this petty shit anymore?
It really goes beyond that though. It becomes a deep fear to even leave the house. You start thinking about things no one else would. Like – how can I leave at any given moment if I need to without drawing attention? How far from home is this plan, if I get a migraine how long will it take me to rush home? If I go to that persons house, will my stomach rebel against me and leave me in a deeply embarrassing situation? Do I have all my medications, comfy clothing, water bottle? Then if we do end up going, it’s rare we even have fun because we’re too busy worrying or pushing through whatever symptoms we’re dealing with that day.
It is so damn EXHAUSTING!
And so, we stop planning anything. We stop even accepting plans that are further than a half hour drive from home, or any plans that might be over night. We simply stop making plans.
Yesterday I was babysitting my niece (1) and nephew (3) all day. I loved hanging out with them, but I got a new insight into what it’s like to have kids when you have a chronic illness.
Children never stop. Ever. They’re little balls of energy, addictive and adorable, but oh so exhausting after a while! I can honestly say that the longest and most stressful day at work never amounted to a full day looking after little kids. Not in the sense that it was stressful, but just how much it takes out of you.
Now, my glimpse at life as a mother was tiny, but told me so much. I probably managed to go to the bathroom once all day, and had to eat quickly while they were distracted with their own food. I cooked dinner with my niece in one arm while trying to allow my nephew to help prep the veggies without hurting himself and without actually letting the food burn. Then I gave them both a bubble bath after changing the nappy of my 1 year old niece, that was so full that I just couldn’t believe such a little human could produce so much poop!
The noise – they were ‘chatting’ and making noises all day, while constantly demanding attention and forever moving. They wanted to go outside, then inside, then outside. Then eat, poop, play, watch TV – rinse and repeat!
For all mothers out there – I have the utmost respect for you. I can’t wait to become a mother myself, but man I could see the struggle you all go through on a daily basis. Any man that says “you were at home all day, why didn’t you get anything done?” – I will personally kick you all in the balls.
Now, to the mother with chronic illness – that’s a whole other level of respect I have for you! To the mothers suffering with an autoimmune condition, chronic fatigue, diabetes, arthritis, even cancer – you are an absolute SUPER MUM! To suffer through daily fatigue, pain, nausea, digestive issues, chest pain, dizziness, insomnia, and a whole other gigantic list of issues, and STILL be able to push through all that and look after your children in the way they deserve. You deserve a god damn medal!
You don’t have time for yourself, not even a second. Not when your little babies are demanding all of it. You put yourself second ALWAYS, and I think that takes incredible strength. Self care has probably become a distant memory for you, but I still feel like it’s so important, no matter your circumstances. You need to look after yourself, to be able to look after your little ones.
For everyone else out there without children – I think it’s important to offer some support and have some more understanding on what mothers in general go through, let alone mothers who are chronically ill. Offer them an extra hand, watch their kids for half an hour while they shower and wash their hair – every little bit helps. Offer them the self care time they so desperately need. This goes for all mothers, not just the chronically ill.
But pay extra attention to those with chronic illness or pain. Extra attention to how they’re coping mentally as well as physically. I myself spent the entire day today in bed recovering, and my condition is no where near as severe as some others.
To the chronically ill mother – I see you. I think you’re incredible. Please don’t feel guilty for something you cannot help, please see that you’re doing an amazing job and pushing through so much more than anyone should have to. You’re a good mother and you’re a strong woman.
This is entirely my fault. For two years I have been suffering with health issues and chronic widespread pain, spending thousands of dollars on appointments, tests, medications, hospital visits and surgery. Unable to work full time or have a normal social life.
And apparantly unable to let my own family in on this huge life changing illness. Whoops! 🤦♀️
I made an assumption. A stupid one. You know what they say when you assume, right? I did that. I made an ass out of u & me. Or them and me, if you want to get technical.
My mum and dad knew most of the details, so I had just assumed they would have let everyone else know. I kept the details close to my heart, not wanting anyone to know how much I was really struggling, but hoping my parents would give them the general gist.
Apparently they didn’t. And so, two years after this all started, my brother and sister-in-law asked me why I had resigned from my job and what was going on with my health. When I mentioned my migraines, my possible Lupus diagnosis, my brother asked if that’s the reason I go to bed insanely early, like a light bulb just went off in his brain and everything suddenly made sense. Because guess what? Everything suddenly DID make sense! When you actually explain the facts to people, first hand, everything falls into place. Funny that!
Now, after that conversation, I realise that I’m guilty of exactly what I’ve been ‘preaching’ against! Not talking openly to my own family for fear of judgement and simply hoping someone else would do my dirty work hasn’t done me, or them, any favours. Sure, judgement is a part of life. So why are we so scared of it? I think that’s a hard one, because we don’t want to know the people we love the most don’t understand what we’re going through. That’s so damn isolating!
But they didn’t judge, even if they didn’t fully empathise with my situation. They just wanted to know, to understand. Because they’re my family, and they love and care for me. It seems so crazy to me now that I didn’t trust in that.
I’ve heard people say there’s no stigma with chronic illness, only with mental illness. But I disagree. There is a stigma, if there wasn’t I wouldn’t have been so scared of judgement. That fear had come from somewhere, and it caused me to hide what I should have been sharing as abundantly as possible. The stigma is based around chronic, invisible, undiagnosed illnesses. Am I making it up? Bunging it on?
Every time someone asks me how I am, genuinely wanting to know if I’m okay, my response is always “I’m okay. Same old.” I kick myself every time. What does that even mean?! Same old? REALLY? Just tell them the truth, that I’m struggling with migraines and I’m tired of pushing through. That I’m desperate for a break. That I’m trapped in a body that’s constantly in pain and all I want to do is live my life. That I HATE that I had to quit my job.
THAT’S the truth I should be telling. So why is it so difficult? My fear is damaging not only to myself, but to everyone else.
I’ve been totally honest with all these strangers via my blog – but not with my own flesh and blood. Maybe it’s easier to face being judged by strangers, than by those we love. Maybe it’s less scary – less hurtful. But I am causing harm nonetheless. I am unintentionally feeding a stigma.
Well… No more. I AM SICK. I am a barely functionally, chronically sick person. I go to bed at 5pm because I’m bone achingly tired and I’m trying to beat my migraine by going to bed before the pain gets too bad. I avoid social outings because I’m scared I’ll have to leave early which either forces my boyfriend to have to leave early with me or forces me to either explain the truth to everyone or make up a lie. I’m not sure which is worse. I can’t work full time because I’m physically and mentally exhausted from having to push through daily pain. I’m terrified of doctors visits because I’m tired of being told that they can’t figure out exactly what’s wrong, and I’m embarrassed every time I have to explain that fact to everyone else waiting to hear my diagnosis. I’m dead broke, partly because I can’t work enough and partly because doctors, medications and tests are SO expensive. I hide my pain and fatigue until it’s really bad simply because I’m tired of complaining. I hide pain from my own boyfriend who just recently said “how come you don’t get migraines on weekends?” Ha! Well, I do. I just medicate more and push through it more so that he won’t see the full extent of how broken his girlfriend is. Even though I know he’d understand, I’m scared that maybe one day he won’t anymore. I work every day to protect myself both physically and mentally.
I’m a sister, a girlfriend, a daughter, a friend. I’m a person – and I’m chronically ill. Welcome to Laura in real life.
“I don’t deserve diabetes!” is all I remember saying to
myself as I lay in the hospital bed. I
was a young, relatively fit, and healthy 19-year-old. No family history of
diabetes and my whole life ahead of me. I was broken and hysterical – I needed
a sedative as I broke into tears realising my life would never be the same.
A couple of weeks prior to being admitted into hospital I
had been very unwell. I was constantly dehydrated, unable to ever satisfy my
thirst, I was weeing throughout the night, I was eating heaps and losing weight
(that bit was awesome, I lost 10 kilos in 3 weeks without doing much exercise! Amazing
right?!) I wasn’t terribly concerned until I was exhausted, until I couldn’t
get out of bed and finally said to my parents I think something is seriously
wrong. I don’t think my parents were overly concerned either, but they took me
to the local GP anyways. The Doc offered to do a finger prick, but I was too
scared of the pain from this simple test so instead of doing the finger prick
he gave me medication for type two diabetes. A completely different disease. I
went home with the medication, then I was violently ill. My parents took me
back again and demanded a different doctor. This doctor insisted on a finger
prick and I obliged this time. My Blood Glucose Level (BGL) was 30! A “normal”
BGL for a “normal” person is between 4-5.4. My parents rushed me to hospital
where I was admitted immediately. I was bombarded with questions, do you smoke,
do you drink, do you do drugs, is there a family history of diabetes?? No, yes, no, no. Well you’ll have to stop
After 4 days in hospital and learning to test my sugar by
pricking my finger and injecting insulin, I was released back into the world,
the real world. That first night back at home, mum yelled out that dinner was
ready. This was it, I had to inject my insulin all by myself. It took me ages
to be able to do it, it goes against every grain in your body to inject
yourself with a needle (EpiPen, but still). Mum yelled out again, and I knew I
had to do it.
I spent the following years in denial. I didn’t want to be
known as a diabetic, I didn’t want it to be part of my identity. I hid my
diabetes from most people, would only test or inject in the privacy of a
bathroom or my car. I felt embarrassed and ashamed by my diabetes, I didn’t
want people to think I was broken. So, I went about my life as usual – going to
Uni, having wild nights out like any young 20 something, only doing the bare
minimum to keep my myself alive. I hid it from people I was dating. I even hid
it from my now husband. I thought he would think I was disgusting and dump me
for a working and fully functional model. He didn’t.
Looking back on those years now I realise how stupid I was,
the risks I took, going out without backup jellybeans, drinking excessively,
having extreme high BGLs, not testing for hours on end. Diabetes is serious and
can be dangerous. Incorrect carb counting, too much insulin, too less insulin,
exercise, stress, heat, cold, staying up late, injecting before or after
eating, being sick, hormonal changes through the menstrual cycle or being tired
all affect BGLs. And next minute you could be dropping so quickly you turn into
a primitive animal and feel the urgent need to take all your clothes off in the
kitchen and consume copious amount of milo and dried apricots (you don’t get to
pick what you crave in these emergencies). It’s so critical to manage BGLs to
avoid the long-term health complications that can develop from poor control:
Cataracts, blindness, kidney disease, nerve damage, heart disease and my
specialists’ favourite: amputations.
Diabetes affects everything, and no surprise, can cause
depression and anxiety. I find myself feeling anxious about doing new things,
like going somewhere I haven’t been before because I don’t know how far will I
be walking, when will we be eating, what will we be eating, where can I test my
sugar and inject my insulin? I remember being so consumed before my wedding day
about how I was going to manage my diabetes on the day. I didn’t have a bag, where
was I going to keep all my diabetes paraphernalia nearby but out of sight, how
was I going to prick my finger to test my sugar without getting blood on my
white dress (blood goes everywhere) or inject my insulin with this massive
And there’s no rest. Not even while your sleeping. Before bed I test my BGL to check I’m at a “good” number. Too low and I need to have something to eat, too high, more insulin, but will that drop my sugar too low overnight? Sometimes I’ll have a nightmare (a common symptom for type one diabetics) and test my sugar to realise I’m low or going low and have to eat a bowl of cereal in the middle of the night. Other times my BGL has shot up over 20 and I have no idea why and I have to give myself insulin while trying not to wake up my husband.
Diabetes is all consuming, even while I write this I had to get myself a glass of orange juice to keep my BGLs stable. There’s no breaks, every minute or every hour is spent thinking about diabetes, how many carbs in that, how much insulin should I give, have I had enough to eat to go for a little walk, do I have too much insulin stored that will be released all at once if I go for a walk, do I have jellybeans and a juice box in my bag. It affects every facet of my life and there’s even some jobs I’ll never be able to do because the nature of the jobs wouldn’t be safe with diabetes. For example, being a police officer, ambulance or army officer to name a few. Due to the fast paced and sporadic type of work carried out, attending to your own diabetic needs could affect your ability to perform your job effectively. Imagine having to stop what you’re doing to test your sugar, have some jellybeans, wait for those to take effect then continue on during an arrest, during a resuscitation, during an ambush? Not to say there aren’t diabetics doing these jobs, because there are, but the advice I’ve received is that these are not suitable occupations for type one diabetics.
Then there’s pregnancy AND diabetes. Pregnancy is tough for
a lot of women, managing diabetes on top of that was a nightmare for me.
However, being pregnant was probably the first time since having diabetes that
I finally started to take it seriously. Because if I didn’t, someone else was
going to be affected, and like any new mum, I wanted to give my unborn child
the best start in life possible and not be impacted by my inability to manage
my BGLS. I didn’t enjoy any part of being pregnant because my entire pregnancy
was consumed with managing my diabetes so my baby wouldn’t be born with a cleft
palate or Spinabifida. I tried my very best to manage my BGLs, I was counting
every carb, I was writing down everything I ate, how many units of insulin and
any other detail the endocrinologists wanted and sending that to them every
week at the hospitals’ clinic. And every week I would get different feedback –
do this, change this dose, what happened at 4:15pm on Wednesday night, why did
you eat two bowls of cereal? I was still a pregnant woman, I still had insane
cravings. Then one routine visit to the clinic at 36 weeks, the cgt revealed
the baby had stopped moving as frequently. I had to stay overnight for observation.
The next day, following another cgt, it was decided I would be having a caesarean,
that afternoon. I was devastated. I had endured weeks of prenatal yoga,
listened to podcasts, and had planned a natural water birth. I hadn’t really
considered having a caesarean, and now I was having one, that afternoon. My
husband was still at home trying to finish off our renovations. We thought we
had one more month before bub was coming. I sobbed hysterically through the caesarean
then a puffy pink wrinkly baby was presented to me from over the curtain, she
screamed and was rushed off to the special care unit.
One year on, she appears to be a healthy baby, doing all the
things a 1 year old should.
Technology has improved drastically over the years. I no longer have to finger prick very couple of hours as I have a flash monitor which sticks to my arm and I can scan anytime, as many times as I like with a scanner or my Iphone. I put off getting the sensor for a while as I was embarrassed to wear the device – it’s pretty visible on your upper arm and I’ve had lots of people ask what it is. I bought quite a few new tops with longer sleeves to cover it up and threw out others that had no sleeves at all, because I’m still self-conscious about it, like I’ve got some sort of contagious disease and this white round disk indicates that.
Even though I’ve been a diabetic for 10 years, I’m still not okay with having diabetes. I don’t want people to think of me as a diabetic. I feel there’s so much more to me than my lazy, useless, good for nothing pancreas. I don’t want to be defined by my diabetes, I don’t feel like it’s part of my identity, even though it is.
For most people with a chronic illness, there comes with it a care plan that includes multiple specialists. One of these specialists is a psychologist. This makes complete sense, given the toll it takes on the person, body and mind.
However, I hadn’t really been thinking much about it lately, just going along with the flow. Going to each doctors visit and every specialist like a good little patient, without really thinking about what each of them means in my care plan. I hadn’t received the answers I needed from any of them, so I stopped expecting anything from them, and in turn stopped reaping any benefits.
I just kept going to the appointments, adjusting my medications as instructed, doing whatever else they told me, in a numb like zombie state. I thought I had simply accepted my lack of diagnosis and was going on with life, but really I was avoiding feeling that constant frustration, disappointment and guilt.
With my health condition (which may or may not be Lupus) comes many symptoms and many obstacles – the latest being chronic (almost daily) migraines. Even if I don’t have a full blown migraine, I do have some degree of head pain or malaise. If you have never had a migraine, imagine something that caused you horrible pain… Like menstrual cramps or being kicked in the balls (sorry boys.) Now imagine feeling that pain on varying levels daily… It would become kind of hard to think about anything else, right?
That’s what I realised was happening to me as I sat in front of my psychologist after not having seen her for 3 months. I realised in all my effort to look after my physical health, I had actually forgotten something just as important – my mental health.
Now imagine this – I’m sitting in front of a highly experienced clinical psychologist, with 24 years of experience and a PhD. After approximately 40 minutes of her trying to find out what’s been going on in my life and how I’d been feeling, she actually laughed at how difficult it was to get an answer. She was so stumped that she actually laughed, in a very awkward way. I’d once been told many years ago by a different psychologist that getting information from me was like getting blood from a stone. In this moment, I finally understood her frustration.
Now, let me be clear, I wasn’t intentionally being difficult. I’m a very honest person. If I had known how I’d been feeling lately, I most definitely would have shared it with her. But the thing is, I hadn’t thought about it much. When she asked me how I’d been feeling, the only answer that came to mind was physical pain – which wasn’t actually what she was asking about. But when I tried to think about emotions in regards to any situation we had just been talking about, my mind actually went completely blank!
We did get somewhere in the end, she managed to get one emotion out of me and we managed to get to the root of it. All in the last 5 minutes – proving what a skilled doctor she is! But the entire session did actually highlight one major issue to me, and probably to her. That I was not looking after my mental health in the slightest. I was… I AM, so consumed by my physical health, and in my chronic pain, that I completely overlooked my mental health.
That is an incredible mistake – one I’ve never made before. I was genuinely shocked by this revelation.
This highlighted for me the importance of managing your mental health, even while in the midst of a physical health debacle – ESPECIALLY while in the midst of a physical health debacle. Both physical and mental health go hand in hand, and one most certainly can affect the other.
This brings me briefly to the topic of trauma. One would expect trauma to come in the form of a car accident or abuse – but it can also come in the form of an illness. During or after a trauma, people can experience a kind of ‘numbing’ effect (I don’t know the exact clinical term.) This is something I’ve experienced in the past, so I was deeply surprised that I had slipped up and forgotten to focus on something so important.
This is something that should be remembered not only for those suffering from any kind of chronic illness, but also for their loved ones. There is a VERY good reason why psychology plays a part in our care plans, and it’s not something we should be taking a part in just for the sake of it. If you’re going to look after your health, look after ALL of it. If you’re going to check in on someone suffering from a chronic illness, ask them how they’re feeling emotionally also. It may just be the reminder they need.
I don’t like complaining, and I don’t want to complain anymore. I really don’t. I don’t like seeing the looks on people’s faces thinking “she’s complaining yet again.” Seeing the looks of frustration and simply being ‘over’ hearing about my health issues. But guess what, feeling sick every day has become my life at the moment, and I didn’t choose it, nor do I enjoy it. And sometimes, I just need to vent and complain. Because it downright sucks!
Feeling sick or being in pain every day isn’t something I EVER wanted. It’s exhausting and frustrating to say the least. Especially when all I want to do is live my life, to be the bubbly and energetic girl I used to be. I’m a ball of energy trapped inside a failing body. I suspect this is a lot what prison feels like, an actual life sentence.
All that being said, let me rephrase my earlier statement. I don’t want to HAVE to complain anymore. You’re tired of hearing me complain? That’s NOTHING compared to the frustration I feel on a daily basis.
I can see it when people ask me how I am. They sound sincere when they ask, and I’m simply a really honest person, an open book really. So I answer them. “I’ve been better. I had a migraine all night.” And I see their eyes glaze over. They don’t want to hear that, they wanted me to say the perfunctory “I’m good thanks, how are you?” They want me to pretend so we can move on to more interesting topics of conversation, like hair and nails and which party they went to on the weekend.
So I started doing that. I started saying “I’m okay,” even when I’m not. Even when I’m home, achingly exhausted, dizzy, overcome with nausea and trying desperately to push through this migraine. I’m still “okay.” Every day that I work is a struggle. Staring at a computer screen all day under constant fluorescent lighting, struggling through fatigue and fighting off the pain with medication that is only going to cause worse side effects later on. But I still answer “I’m okay.” When I finally complain, it means I’ve really hit that wall of not being able to even pretend anymore.
But this tactic is damaging. It isolates those of us suffering with any kind of chronic illness, whether it be physical or mental. Anxiety or migraines. Depression or Chronic Fatigue. It applies to all illnesses. The less we talk about it, the more the stigma grows, the more people think we’re just bunging it on. It’s not good for us, and it’s not good for them. How can they understand better, how can they gain any awareness, if we’re constantly holding back what we’re going through?
That being said, we have good reason to hold back. Because of those people who don’t actually care to hear how we’re going, those people that instilled that fear in us.
You think I like the attention? Here’s the truth, I would give ANYTHING to not be sick anymore. If I wanted attention, I’d just run down the street in the nude, I wouldn’t need to be ill to get it. I’ve had to quit my job, a job that I loved that had become like a home and second family to me. I quit, purely so I could focus on my health and attempt to get it back on track. So that I could go back to living my life. It was not an easy decision, or a happy one.
If I just wanted attention, do you really think I would have done something so drastic? My complaints are annoying for you, but the reason I’m complaining is a LOT more ‘annoying’ for me. So remember that the next time my need to vent is a drain on your day. Remember that any time ANYONE with an illness of any kind is needing to vent. They’re struggling hard, the least you can do is endure listening to them, and maybe, just maybe, giving them some semblance of relief because you ACTUALLY cared. It’s not hard to be kind, especially if you just put yourself in someone else’s shoes for 5 minutes. Especially if you step out of your bubble and see the pain that surrounds so many people in the world.
Let’s be real. Speak up more when you’re struggling, break the stigma. Complain whenever you feel the need to complain. Vent, get it all out. Force people to hear you and to see the truth. Help them understand. If they get bored, if they don’t care… Well, fuck em! From here on out, I make no apologies for voicing my pain.
For lack of a better way to describe this, let me tell you about the time my body tried to give birth to a Mirena. That’s right, I was suffering contractions for 2 months because of this apparant magical Mirena that was supposed to ‘solve’ my Endometriosis for the next 5 years. Winning, right?
I’ll start by explaining what a Mirena is. A Mirena is a hormonal IUD, which us a small device that is placed inside the uterus to prevent pregnancy. Or, my my case, prevent endometriosis from growing. Pictured below. You really wouldn’t think something so small and unassuming could cause so many issues!
I’d just gone through my 3rd surgery for Endometriosis, and while the surgeon was in there he’d inserted the Mirena, after explaining to me that this would be a great solution to keep my Endo at bay for the next 5 years.
After the surgery I felt a lot more ‘cramping’ than usual, but didn’t question that it could have been from anything other than the surgery.
A week after surgery I was in so much pain that the only relief I could get was through morphine and lying on my side with a pillow in between my legs. I called my surgeon the next day and got no answers or sympathy there. Everything looked fine in surgery, so everything therefore must be A-OK! 👍🏻
I continued on with life, all the while getting excruciating pain every single night, along with most days. I could be at work doubled over in pain, high as a kite on morphine and seriously considering pulling the damn thing out myself. I didn’t have the pain before this, so what else could be causing it? My gut was, quite literally, telling me that this ‘amazing’ device was the root to all my recent issues.
That being said, the Mirena is so effective for so many women. I just happen to be one of the unlucky ones because, as it turns out, you’re more likely to get issues and pain from it if you haven’t had kids, which I have not. My uterus was too tight and did not expect to have a sudden foreign object in there, and simply wanted it gone.
And so began the contractions, which is exactly what I was having for those two months. My uterus was trying to push it out, with no such luck. I was depressed both from the pain and from the hormones being pumped directly into my uterus. I was bleeding none stop. So I made the very easy decision to get it removed.
Doctors don’t warn you of these things. The likelihood of mood changes from the change in your hormones, the possible pain from a device if you haven’t had children. My GP, who is an awesome doctor, was actually the one to finally explain this to me when she removed the device.
I truly believe that the hormonal treatments women go through for conditions such as Endometriosis, need a lot more light shed on them. I truly believe that doctors should warn us of these possible downfalls, especially for hormonal treatments such as the Depo Provera injection, which once given, you cannot take back for 3 months. For me that ended with months of severe depression (which you can read about in my post ‘The Depo Darkness’.) Yes, I most definitely should have been warned about that!
And what about the rest of the population? What do you really know about the treatments for Endometriosis? Since awareness on the disease itself is pretty sad, I’m guessing not much at all. Surgery is the most well known, but there’s definitely a lot more to it. And NONE of it is pretty or easy.
So… let’s talk about it more. Start a conversation, tell people what you’re going through. Or better yet, ask another woman what they’re going through, ask them if they’re okay. Be open, be real. Because, at the end of the day, we’re not doing ourselves or these diseases any justice by hiding it.
“I truly believe that if you gain 3 kilos, all your problems will go away.”
That’s not something I EVER expected to hear from a doctor. Especially a very experienced professor in Endocrinology, highly recommended by a few of my other specialists. Especially after I had explained in detail over the course of an hour that I had always been this shape and that the rest of my family was the same.
I’ve always been a skinny girl, and trust me, it’s not from lack of trying to gain weight. My diet has consisted of carbs and chocolate since I was a little girl. Pasta, bread, potatoes, bagels, rice, they’re all my favourite things! I’ll choose a burger or a pizza over a salad any day! And yet, here I stand, 172cm and 52 kilos.
Growing up I had several doctors ask me if I eat. And that ALWAYS confused me so much. Of course I eat, what a ridiculous question! In fact, I never stop eating! I graze all day long, and that’s never changed. Though when I look back at photos, I do see why they were concerned at the time. I was VERY thin.
But looking at myself now, I don’t think I look sickly skinny to the point where a doctor would blame all my health issues on a measly 3 kilos!
When my health first took a turn for the worst, I lost 6 kilos. I dropped down from 54 to 48 kilos. It was noticeable to everyone and I often heard people talking about how thin I’d become. But there wasn’t much I could do about that. My GP told me to eat whatever I feel like whenever I feel like it to try put the weight back on until I could yet my appetite back.
And I did. I became a huge fan of cheesecake, and relished in the idea of being able to eat it all day guilt free. And I put 4 kilos back on. Back to an average weight for myself. Awesome! Now if I could gain those extra 2 kilos back, it was really just a bonus, but no biggie for the moment.
So when I finally saw this professor, back at my normal weight, and explained all this, hearing him tell me that all my health issues would go away if I gained an extra 3 kilos brought up a lot of questions for me.
Why 3 kilos? If I’ve always been this weight but been healthy previously, why is my weight an issue now? Are you really allowed to promise me such a thing? Are you dense?
All those questions and more were running through my head. It was absurd to me! And yet, when I got home and mentioned this seemingly crazy doctors prognosis to a few people, they agreed with him.
Suddenly everyone around me was telling to me gain weight and then I’d feel all better, watching what I ate and telling me to eat more. Like I hadn’t spent years trying to gain weight with no success, like I could just force myself to shovel in more food, like my metabolism would just change in an instant. Had everyone lost their god damn minds?! I couldn’t figure out what on earth was going on.
But later on I realised. These people care about me, and saw me go from a healthy and energetic 28 year old, to a sick girl who barely had the energy to go to work, kept ending up in emergency, had shed 6 kilos in no time at all, and suddenly had a whole other list of issues that no one could understand or explain. And they hear me come home and tell them that a doctor gave me an answer, and they clung to it. I understand that.
What I don’t understand is a highly experience professor making false promises to a woman with health issues simply because it would hurt his ego to admit he couldn’t figure out what was going on. What’s more is that it’s dangerous for a someone in his position to ever do that without the relevant tests to back up that claim, and to rule out anything sinister.
Guess what Dr Dense, I went to Fiji and gained those 3 kilos, and not one thing changed (shocker.) If anything, my health has deteriorated in the last year since I’ve seen you.
It truly scares me that he dismissed me so carelessly. How many other people has he done this to? With a reputation like his, I like to hope it’s very few. But with a reputation like his, it makes it all the more dangerous if he was saying this to other people. Other people who might believe him and not look further into their health.
There’s two things I took from that experience. Doctors are human and make mistakes too, and second opinions are not only acceptable, but crucial.