During an emotionally charged discussion about my health recently, I blurted out “but I’m one of the strongest women I know”. It wasn’t an idle boast. If I’ve learned anything from the last 7 years, it’s that there’s not much I can’t bounce back from with my trademark goofy smile and a cuddle, and we’ve not had an easy time of it. In the last five months alone, I’ve moved house twice, started a new job with new people and all of the socially awkward anxiety that entails, been in hospital 5 times (not including regular scheduled appointments, of which there have been many), sprained my wrist in the middle of the second move while the beau was away in France which then took more than 8 weeks to heal, come to terms with PCOS as a chronic and incurable illness, had my car die on me, gone through long periods of sleep-deprivation and been through the emotional roller-coaster of learning how to live with someone again when the last man I lived with was abusive.
I thought I was doing pretty well. I’ve had a lot of down days, particularly when my hormones are at war, as evidenced by previous posts, but on the whole I’m actually pretty happy. I’m just a regular girl in love with a really nice guy in a lovely new flat in a city that I’m really enjoying living in. I put myself through a series of therapy sessions because I thought I’d be proactive about these issues. I congratulated myself on having seen them coming and asked for help before things got too bad.
And that’s the sneaky thing about strength. Sometimes we’re so convinced that we’ve got everything under control that we either delude ourselves that things are not what they seem, or we are downright in denial about what’s going on. We get so convinced of our ability to survive anything that we forget that sometimes it’s okay to admit that we can’t. There are times when strength is a weakness in itself.
When I said I wanted to be a voice to highlight issues surrounding domestic violence and about PCOS, I honestly didn’t expect it to be this hard. It’s not easy to open up about being vulnerable. My previous post about depression was a really difficult one to write but I had said I would do it and I did. Somehow this one is even harder. I don’t know if it’s because I don’t want to share about the mountainous proportions of my stupidity or if it’s because sometimes it’s easier to talk about things with less stigma than stress. We’ve all heard it – people poking fun at others taking time off for stress. Someone in my family asked me recently “but what have you got to be stressed about??”, like just the fact that I have good things in my life should outweigh everything else. Just last week I heard someone make a joke about how it was funny that people who are off with stress get miraculously cured around the time their pay gets cut, without any thought for the fact that perhaps trying to function normally is less stressful than trying to survive on insufficient funds. Everyone that heard the joke laughed. There is this crazy and insidious idea that stress is something we choose, that it’s a mental illness that’s all in the head, that people who give in to it are weak and just need to put on their big girl pants and brazen it out. Depression as a clinical illness is gaining traction in the compassion of the general public because it has been so well highlighted lately and so many celebrities are talking about it and making it relate-able. Stress hasn’t had the same kind of PR and the sad truth is that I was just as susceptible to the judgements about it as everyone else, not because I thought that it wasn’t a genuine and distressing clinical illness, but because I assumed that it couldn’t happen to me. I thought that because I felt strong mentally that nothing that was going on with me physically was an expression of stress. I had this mental image that people suffering from stress are having emotional and mental breakdowns, that it literally is a problem of thought pattern caused by chemical imbalance in the brain and not physical illness. I thought that because I was strong and I have survived so much that I’m immune to it.
I was wrong.
The really stupid thing is that I know that women with PCOS in particular react really badly to stress. I know that. I even wrote about it during awareness month. I’ve done the research and can tell you about the inflammatory protein cascades and the massive metabolic upset that happens when a woman with PCOS is under stress. I know the science of it and yet somehow I still didn’t see this coming.
Our story starts back in July when I had an allergic reaction to something I ate and triggered off a whole cascade of unpleasant digestive issues which then went on and on without any sign of ceasing. I had a monthly review and then a two monthly review. Around mid October when I was still having problems, my doctor said to me that it was a sign of stress. I brushed it off because I felt fine. I just assumed I was going wrong somewhere with my diet (even though that’s pretty stupid because we’re so damn careful with my diet).
A couple of days later, the palpitations started. If you’ve ever had these, you’ll know that they’re essentially harmless but very unpleasant and a little scary. Off we go again to the doctor, a different one this time, who says to me that it’s probably stress but we’ll get my heart checked out just to be absolutely sure there’s nothing physically wrong with it. At the time he asked me how I was sleeping and I just laughed and said about as badly as normal. I have a variety of sleep issues and so I laughed it off, but the truth is that it was getting much worse. I’m waking up 6 – 8 times a night at the moment. It’s the worst it’s ever been. I had assumed that it was my breathing problems because I’m aware they’ve been getting worse too, but it didn’t occur to me that I could be waking up in the night due to stress. I just put it down to apnoea. I brushed the palpitations off as tiredness because when I got home, I looked at the link between tiredness and palpitations and studies said there could be a link, so I just rolled with it.
In between all of this, the mood swings were getting pretty extreme. My capacity to deal with things was diminishing by the day. I will accept and own up to having been a less than supportive girlfriend while the beau has been having a hard time because I just did not have the spoons to deal with his woes on top of mine. It was easier to walk away than try and get to the bottom of what’s going on. The smallest of things would irritate me and I would nurse my insignificant resentments into big deals. I put it down to tiredness and hormones – always with the hormones. I’m still off my PCOS meds because my stomach won’t settle down. It was an easy scapegoat. Blame everything on the hormones while they’re running free and unfettered by modern medicine.
In early November the headaches started. They’d be there when I woke up in the morning and they would bang away in my brain like a chorus of jackhammers for four and five days at a time. I wrote them off as tiredness and/or hormones because I have a history of hormone-mediated migraine type headaches.
Around the same time, my acne started to flare up really badly. There have been days lately where my scalp has literally felt like one giant oozing sore. It hurts to touch and the big cystic lumps have started spreading down my neck. I figured it was something we had tried with my diet or supplements that had affected my hormones.
Are you seeing a pattern yet? The more of this story I relate, the more of an idiot I feel.
Late in the second week of November, the dizziness and nausea started. I was constantly having dizzy spells and I put it down to tiredness or standing up too quickly. I charted my cycles on my app and thought maybe the nausea was something to do with my hormones because they may or may not have started around my fertile window or in the run up to my period. The dizziness got so bad going into the third week of November that I couldn’t do basic household tasks. Standing at the sink to do the dishes would lead to me having to go and lie down for ten minutes until the world stopped swimming. But no…sure, I told myself, it’s just tiredness. I’ll be okay with just a couple of good nights’ sleep. I’ll be fine. I pushed through with going to work, occasionally having to just hold my head in my hands until the words on the screen stopped looking like they were having a party. We had a weekend away planned where, I convinced myself, I could rest and relax and the dizziness would go away.
Midway through the third week of November I had a horrible fright. The digestive issues had become so bad that I was bleeding again. Off it was to the doctor again, a new one I hadn’t seen before. She asked what was going on, had a read through my recent medical history, doubled my dosage of medication and then gently told me that she’s ordering tests, but when they come back negative, she’s formally diagnosing me with IBS. It was triggered by whatever happened in July but has been aggravated ever since by stress and will continue to be aggravated by it until I can get whatever is going on with me emotionally under control. She gave me leaflets to read and sent me away.
This is the moment that I’m really angry with myself for. You’d think that at that stage, when I have to deal with the ramifications of actually damaging my internal organs and I’m reading leaflets about potentially life changing dietary requirements and I’ve been told by three different doctors that I’m suffering from stress that is quite literally breaking my body, that should have been the moment that I accepted that something had to give.
But no. The strength of my denial is really something to behold. I told myself I’d be fine. The diet isn’t really all that different to what I eat for the PCOS, just a little more restrictive. I just shrugged and figured I’d manage it, like I’ve managed everything else. I wasn’t even really all that surprised by the diagnosis because I’ve had problems with my stomach for years and had suspected something along those lines for a while. Instead of looking at the reason it’s been so bad since July, I took a good long look at what managing it in its current state would entail and then just shrugged and figured I’d get on with it. I assumed that switching diets would “fix” the problem, even though it was right there in black and white on the NHS leaflet that the best way to get it under control is to manage my stress.
I just didn’t feel “stressed”, or what I assumed stress would look and feel like. I felt normal, like I was managing everything just fine.
The last straw came over the weekend. Feeling dizzy and nauseous, I decided to take myself off and have a bath and get into my pyjamas before I attempted to cook dinner. I’d been so sleepy getting dressed in the morning that I hadn’t noticed what was on the front of my pyjama top until I went to put it back on. I’m sure I’ve mentioned this as a bizarre side effect of the PCOS before, probably to highlight just how weird it can get, but when I get massively stressed I get hyperprolactinaemia (elevated prolactin levels) which causes me to lactate. I can’t even begin to describe how thoroughly weird this feels as someone that has never had children and doesn’t intend to. But what really set me off and triggered a full scale panic attack, complete with ugly crying and inability to breathe and feeling like I was going to throw up, was the memory of where I had been the last time this happened and the aftermath of it.
The (first and) last time I had lactated to this extent was 5 years into the relationship with my ex, which should give you some idea of where I was at both emotionally and physically. It precipitated a panicked visit to the doctor which led on to potentially the most humiliating hospital visit of my life (being expressed, bare chested in a room full of specialists and medical students, is not fun). That couple of weeks before they diagnosed it as stress mediated hyperprolactinaemia were terrifying because the alternative was that it was being caused by a tumour. Despite prolactinomas being classed as “benign”, they had fully prepared me for the fact that I might have to have my pituitary gland removed and spend the rest of my life on a cocktail of drugs to compensate. It was terrifying.
The realisation that in my blind stubbornness about what my body has been trying to tell me for the last 5 months, I have managed to somehow get myself into the same state as the equivalent number of years of abuse caused was worse than sobering. It was like a punch in the stomach. Finally…finally I can accept that this is a pattern of illness that has a central cause and I need to deal with that before anything else breaks. Hyperprolactinaemia is not caused by PCOS; it’s a distinct and separate hyperandrogenism disorder, although the two often go hand in hand. It’s not caused by tiredness. There is no way that I can prevaricate or blame it on anything other than exactly what it is – a stress mediated disorder. It also accounts for the headaches and the acne flares and a lot of the other weird stuff that’s been going on with my body lately that I’d written off as “just hormones”. I might feel fine mentally, but my body is telling a completely different story.
This morning I called in sick. Later in the week when all my tests have come back and we have a clearer picture of what’s going on with me physically, I’ll have to go to the doctor and discuss stress management. In my inability to admit that something is wrong, I strongly suspect that I have given myself a big hill to climb before I’m recovered. This isn’t an overnight fix. It’s not a question of just catching up on some sleep and everything will be okay. If this does come back as a diagnosis of IBS (as opposed to inflammatory bowel disorder which also flares under stress), the doc has warned me that it might take months to get it under control and if I can’t, there’s a possibility that I’ll need minor surgery to repair some of the damage it’s done to my GI tract. This is going to take counselling to deal with what are clearly unresolved issues. It’s going to take some hard discussions and hard work with the man I love about what I can and can’t manage about the house until I’m back up and running again. My emotional strength has done me a disservice in this instance and that’s not an easy thing to admit.
Even now, I feel a bit silly taking time off work because that inner strength is still trying to tell me that I’m fine, that I’ll get over it, that I just need to pretend everything is normal and the sickness will go away. I still haven’t let go of that idea in my head that “stress” is just anxiety and feels like anxiety and that I can’t really be stressed because I can still think in linear and rational (ha!) patterns. I’m having a hard time letting go of worrying about what everyone will think about me when they find out why I’m off work, if like that joker last week they’re assuming I’m time wasting.
And even now I’m still lying to myself. I’ve had two panic attacks since last Thursday and another one this afternoon. Having allowed myself to decompress today, I’ve spent most of it lying in bed crying because I’m not capable of actually getting up and doing useful stuff. The longer I keep writing these off as isolated incidents instead of looking at it as a whole, the harder it’s going to be to recover. Claiming that I’m fine mentally, apart from the odd episode here and there, is misleading. Those panic attacks are quite clearly symptomatic of something much deeper going on that I just can’t see right now.
That’s why I knew I had to write this post. I can’t be the only one going through these things, not even close. I can’t be the only person that didn’t realise you can go through massive amounts of stress without actually noticing or acknowledging it. And if reading this helps even one person come to terms with the fact that sometimes it’s not just okay but necessary to lay down that inner strength and lean on others for a little while, then it was worth flaying myself open like this. If it educates even one person who thinks that stress is entirely mental and doesn’t have a massive traumatic physical impact on the body, then it’s worth it twice over.
Being a voice for these issues isn’t easy, but I’ve spent too much time lying to myself about how I feel not to speak out the truth when I have come to accept it.