THE MENTAL EXHAUSTION OF LIVING WITH A CONFUSING CHRONIC ILLNESS.

On Friday I was given a diagnosis for an illness that I have struggled with, on and off, for just over four years.

If I were the type of person to use exclamation points, there would be thousands of them after that sentence.

If I were the type of person to film my life, I’d be relaying this information to you in-between shrieks of joy.

If I wasn’t so fucking tired, I’d probably be able to write it a little bit more enthusiastically.

Unfortunately, the route by which we finally reached a conclusive ‘this is the thing that has been ruining your life for over four years’ included a lot of vomit and pain and the relief was mixed with a hefty dose of ‘ohforfuckssakeFINEbutcanwefixitnowplease’.

For those people that have been following me for a while, you’ll know about my health issues, for the simple reason that I literally never shut up about them.

I have talked a lot about my issues with “IBS” (something I was first diagnosed with four years ago) but have long since suspected, as my symptoms became more and more severe, that that was no longer just what I was suffering with.

As it turns out, I was right.

Although IBS is still very much a factor (it is an umbrella term for a whole series of stomach issues), I now know I also have something called dysmotility which is a disease in the small intestine.

I don’t really want to get into it too much, bizarrely. I don’t know enough about it yet and I have a long road ahead in terms of treatment and so until I’m on the right path, I’m going to just crack on quietly.

So if it’s alright with y’all, we won’t talk about the diagnosis; rather, the time it’s taken me to get here. We’ll talk about the doctors that brushed me off, the nutritionists ready to take away yet more from my already limited diet, the unsolicited but ‘probably worth a try’ advice I receive online whenever I talk about it, the friends and family treading the fine line between apathy and sympathy.

And we’ll talk about what it did to me: how it made me feel like this was all in my head, as test upon test came back with ‘nothing obviously there’, how I began to fear food, ALL food, how I hated my body, not just for how it looked when it was swollen, but for being so hopelessly useless at the most basic of things, how I lost all of my energy, hid myself away, curling into the small version of myself in the hope that the enormous reality of my condition wouldn’t be noticed by the world.

Of all the things the doctor said to me on Friday the one thing I remember clear as a bell was: This illness is definitely not all in your head.

My relief at hearing this sounds ridiculous, I do know that.

If I showed up at the hospital with a suspected broken arm, I would not feel an overwhelming sense of joyful gratitude when the doctor decided to give me an x-ray.

But for whatever reason, when it comes to an ‘invisible’ illness (not strictly speaking the case when I’m severely bloated but you know what I mean), you do feel like that; disturbingly grateful at having your feelings validated.

Not least of all, I suspect, because the stomach is incredibly connected to the mind.

There hasn’t been a doctor I have seen that hasn’t asked if my anxiety might be causing these problems. They all ask me if I’m under a lot of stress, if it could be stress causing my symptoms.

The last time I was asked this by a doctor, I snapped. I asked him what he would do if everything he ate made him ill. Would it make him feel calm? Relaxed? Inclined to recline back into his chair and smile sleepily after every meal? Or, after a while, would he too concede that this was a bit shit, feeling so ill, ALL THE TIME, and in turn, start to feel a bit ‘anxious’???

Now that’s not to disregard the connection between stress and the stomach. I do know that they have to ask. I know I probably wasn’t right for snapping. I know, in my heart, that the stress that began to surround food was probably worsening my symptoms (but I stand by the fact that I didn’t one day wake up and decide to be so scared of everything I ate that I started vomiting).

But the mind and the gut are totally entwined, closely connected. I don’t know how; I’m not a doctor (clearly), but I do know that stress wreaks havoc on the tummy.

So I don’t doubt that my stress surrounding food was making my illness worse. But what was I supposed to do about that? I am unable to escape food. I need it to survive. And yet 9/10 times, it was making me sick.

Whether you like it or not, after a while, this will start to fuck with your mental health.

*if you own a tiny violin, now would be a good time to get it out and play it because you’re cordially invited to my pity party*

The last three months for me in particular have consisted of a bloody strict diet; minimal meat, no refined sugar, no gluten and dairy still, no heavy carbohydrates in the evening, no fruit other than berries, no booze, the list goes on.

It’s fine. I can manage it. Just. But I am managing it from my house, I never eat out any more, hell I never GO out anymore. My kitchen and I are working through this one, together.

I was standing on a precipice; ready to fall at any point.

Lovely Alex came home the other day moaning that the co-op were luring him in by stacking all the boxes of chocolates right by the front door at discounted prices.

I had to buy these Jaffa-Cakes!!! I got this massive box for £2!! he said, as he unceremoniously shoved an entire biscuit (or cake, whatever you call it) into his mouth.

Later that night, god bless him, I was in pain because the kale I had tucked into hadn’t settled right and in a bid to make me feel better he started talking about how “we” were going to get through this. How “our” diet was so plain that my stomach couldn’t possibly react.

A round of applause to me please that I didn’t kick him straight up the arse but was able to, instead, say thank you for eating so boringly with me, but also, please never say “we” again, least of all when you still have remnants of jaffacake all done your front.

I have to be really careful at managing my illness and managing my relationship.

It’s very easy to moan, all the time. Most nights I haven’t got the energy to get off the sofa. I’m normally the one that cooks, but at the moment, if I’m making anything, it’s not the sort of thing my Ironman boyfriend needs whilst he’s training. We usually go out, a lot. We’re sociable; we eat out, see our friends, frequent the pub and at the moment we’re not doing any of that.

I want him to keep cracking on, living his life, but he doesn’t want to leave me on my own feeling like a sack of shit and riddled with FOMO.

He’s a saint. And I’m trying my best. But it doesn’t mean it’s easy on either of us.

The same thing applies for my relationship with my friends. They’re brilliant and sympathetic and lovely but they are busy people and they’ve got their own shit going on and how are we supposed to hang out if by the time they finish work I’m too tired or in too much pain and can’t eat at a restaurant or drink at a pub anyway?

Mentally, I was just so on my own with this.

I know one other woman going through something similar right now; she too has an illness that no one can really work out.

She called me just before Christmas under the pretence of giving me advice about specialists and diet and doctors, but a few minutes into the conversation, we had changed course and I found myself crying big, fat, ugly tears.

Finally, someone who understood.

Finally, someone who, like me, had spent so long with a brave face painted on that the cracks appearing were beginning to actually, physically hurt.

Who felt like her family and friends were bored of her. Who was scared of food. Who was lonely and tired and confused.

Confused by an illness that no one was diagnosing.

I know I’m a long way from the finish line.

I’ve been put on a medication and we’ll see how it goes; it may not work and the treatment for this, I’m told, consists of a lot of trial and error. Initially with diet and then, ultimately, can be managed with medication.

Quite frankly, I wouldn’t have given a toss if the only way to manage this illness was to shit into my hands every day and clap three times.

I’m just so relieved that there is something to be done. There is a way of not feeling like this.

This piece of writing, I think, might just be the most depressing thing I have ever put on this blog. And I have spent the last three days umming and ahhing as to upload it or not.

BUT.

The mental repercussions of an illness, are, to my mind, as important as the physical ones. And the one thing that I’ve found really hard about all of this is the loneliness.

In the scheme of things, I was okay.

As yet another test would come back negative the doctor would be happy for me (reading between the lines he was telling me I was lucky, I didn’t have a tumour), and I would be angry at myself for being sad. Not that I didn’t have a tumour, obviously, but that ‘nothing wrong’ was absolutely the news I didn’t want.

I wanted something to be wrong, desperately, so that we could fix it.

And that made me a dick, and I’d spend a lot of time feeling guilty for that.

There are streams of people out there living with conditions and illnesses ten times worse than the one that I have, and they are doing it so brilliantly and so inspiringly that I spent a lot of time feeling like a twat.

A hopeless twat, mostly. By comparison to some of these people I was the pinnacle of health and yet there they were writing cookbooks and curing themselves and being personal trainers and saving the damn world.

I spent a lot of time trying to remind myself that social media is nothing but a highlight reel. Even my own messy Instagram feed is, believe it or not, the best of a bad bunch.

But as I seem to approach the end of what has been a bloody long road in working out what’s wrong with me, I decided I needed to shed a little light and honesty on my recent reality.

Because living with an illness that no one really understands is desperately lonely. I’m only beginning to appreciate the sheer magnitude of that feeling as I write this all down.

I’m taking the honesty up a notch, just this once, for anyone out there struggling with a chronic illness who is feeling on their own.

You’re not.

And it won’t be like this forever.

It is shit, and you’re going to feel guilty and tired and sad and confused. You’re going to feel angry and resentful. And you’re going to feel lonely. You may also feel mad. I spent a lot of time feeling like I was probably mad.

I cannot tell you how nice it feels to know I’m not.

It’s not in your head.

And you’re not on your own.

The two sentences I needed to hear more than any other.

It’s not in your head, and you’re not on your own.

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5 Comments

  1. Niccia
    January 13, 2019 / 6:22 pm

    Am so glad for you that you realised it isn’t all in your head!! And that you are not on your own. Also that there is a cure for you. I have IBS, anxiety (panic) and migraines and for me there was a serotonin link. The relief I felt was incredible. Anxiety in itself is awful and the dread sometimes is unbearable but combined with pain and illness it becomes terrifying. I hope you get to feel better soon. You are an inspiration.

  2. foreverseptember1
    January 13, 2019 / 8:54 pm

    I’m so happy for you that you now have a diagnosis, such a huge weight off your shoulders. There is nothing more frustrating than being told ‘its all in your head’ when you know full well, it isn’t. I hope there is medication that can help control the issue and get you back on track. I totally empathise how stomach issues can affect day to day life and I’m honestly just so glad you finally have answers!

    Lucy | Forever September

  3. Johanna S
    January 13, 2019 / 9:26 pm

    I also have IBS and I feel every word you wrote. I am afraid of food, I pity myself most of the time, I’m afraid to go out or go to friend’s house, all that jazz. It’s so hard to explain to people that everything makes your stomach feel bad, and I used to feel so alone with this. Your posts made me feel like I’m not alone, thank you for that. I hope that one day it will and and we’ll able to make it through.

  4. Andrea
    January 14, 2019 / 2:19 am

    First of all, i discovered your blog thanks to Sophie Milner and you are hilarious and have a variety of topics that are very real and very relatable. I feel you completely. You are a trooper and I really hope you feel better soon. It’s not in you head, in Chinese medicine all of our feelings (anxiety, worry, anger, etc) are connected mostly to our digestive system. There is still so much to learn about our bellies and how they are connected to our brains. There is a great easy to read book called Gut about this.

    I ve had similar issues for a while and only in the last few months I started feeling more normal for longer. The recovery is not straightforward, but it will get better. For me nutrition has made a huge difference. Since I went to see a dietitian and I took certain things temporarily out of my diet I improved significantly.

    Your posts are real and you keep making me feel like belly/mental issues are not abnormal. Thank you!!!!!!

  5. January 20, 2019 / 12:06 pm

    I was diagnosed with endometriosis back in 2017 after nearly three years of constant tests, doctors visits and specialist appointments. I was told so many times that there was nothing they could do – I started to doubt my own experiences and feel like it was all in my head.

    I can wholeheartedly relate to finally being given a diagnosis and the sense of relief I felt. It was validation that I wasn’t crazy. I wanted to scream at one particular specialist for not picking up on it sooner.

    Now you’ve been diagnosed with a chronic illness you’ll go through so many different emotions; anger, frustration, feelings of impending doom – its a roller coaster. I can’t promise it will get better, but having a good support network is exactly what has helped (and still is helping!) me through it.

    Best of luck to you and your journey to mange your diagnosis xx

    Lynsey || One More Slice

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