There is a huge overlap between mental health problems and chronic illness.
I wanted to try and raise some awareness of this topic but not having experienced chronic illness myself, I asked my friend Jenny if she would write a guest post for me. She was keen to be involved in this having had difficulties with both of these areas, so here is her views on the topic.
Cara and I have known each other for many years after meeting in an adolescent psychiatric hospital in our teens. Despite us obviously going through a difficult time, we had a hell of a lot of laughs during our time there, and thankfully we’ve kept in contact since then. So when Cara asked if I would write something for her blog, I knew it was something I would love to do!
I was born with a genetic condition called Hypermobile Ehlers-Danlos Syndrome, although I didn’t receive the correct diagnosis until I was 25. Ehlers-Danlos Syndrome (or EDS for short) affects the connective tissue in the body, which pretty much holds everything together and in the right place (you can probably see the problem here if it doesn’t work!) It causes a whole range of symptoms including, but not limited to, hypermobility, dislocations, chronic pain, fatigue and problems with the circulatory, digestive and urological systems. Alongside my EDS, I also have Postural Orthostatic Tachycardia Syndrome (POTs), Gastroparesis, Intestinal Dysmotility, Bladder Dysfunction and Mast Cell Activation Disorder. So, in a nutshell, my body is a bit broken!
As well as my physical health problems, I have also spent a lot of my life battling various mental illnesses. At the age of 15 I became incredibly depressed and anxious and began to suffer from an eating disorder. I was eventually hospitalized when I was 17, which was when I met Cara. Since then, my mental health has been pretty up and down. I was sectioned back in 2012, again for severe clinical depression and an eating disorder (the exact diagnosis was fairly changeable – anorexia, bulimia and an eating disorder not otherwise specified). And I have since been diagnosed with Mixed Personality Disorder (basically, I don’t quite fit into a particular box for just one personality disorder, so I was ‘lucky’ enough to be told I had traits of Cyclothymia, Borderline Personality Disorder and a few others thrown in for good measure!) But I’m not just here to bore you with a list of my diagnoses! In today’s post, I want to talk about how living with chronic illness can affect your mental health.
As with any situation, everyone’s experiences of chronic illness and mental health are going to be different, so in this post I can only talk from my point of view. However, I do think it’s quite well accepted that our physical and mental health are closely linked. Have you ever felt a bit nervous about an upcoming interview and found yourself feeling sick or having a dodgy stomach? Or have you come down with a really nasty virus and ended up feeling a bit emotional or fed up? Even these simple examples show just how closely related or body and mind are.
For me personally, I can definitely see links between my physical and mental health, although it can be incredibly difficult (or even impossible!) to pull the two apart. My physical health was relatively stable until I hit the age of 15. Suddenly, everything seemed to start going wrong with my body, but at the time I had no idea why, and neither did my doctors. Unfortunately, I ended up with the wrong diagnosis for my physical problems for the next ten years, which without a doubt negatively impacted on my mental health. A lot of my symptoms were put down to things like anxiety and an eating disorder, as well as being told I had M.E/CFS. My family and myself were never convinced these diagnoses were correct, and as time went on I felt less and less taken seriously by medical professionals. It was a huge struggle to get any kind of support or treatment for my symptoms, and over the following ten years the continual fight to be listened to and heard completely ground me down. I felt so poorly – my body was doing things I didn’t understand and I was becoming more and more isolated by my health – it’s no wonder that my mental health suffered. I know that not everybody with a chronic illness suffers from poor mental health, but I don’t think it’s unusual to struggle mentally when you feel physically terrible and spend your life in and out of hospitals.
I had had blips in my mental health before the age of 15, which looking back now with the knowledge of my diagnoses, makes sense. But it was only when my physical health really spiraled that my mental health followed suit. I often wonder, if I’d received the correct diagnosis of EDS at the age of 15, whether my mental health would have got so bad. Obviously I’ll never know, but I personally think that I’ve always had those mental health problems simmering underneath and that my poor health was one of many triggers that saw them getting worse. If it hadn’t been my physical health problems, then perhaps it would have been something else to trigger it. Again, in 2012 when I was sectioned, the lead up to that point had been a huge decline in my physical health. I had spent months unintentionally losing weight, becoming weaker and weaker, but getting very little support or understanding from my doctors. I honestly believe that my mind, much like my body, just became so worn down and exhausted that it stopped working. And a big part of that was because I had spent so long trying to justify myself and fight with medical staff. You get to a point when you really can’t fight any more, and that’s when my mental illness took over again.
So I guess for me, a big part of how chronic illness affects my mental health is through the treatment I have received from medical professionals. Chronic illnesses can often be quite complex and difficult to diagnose, and if, after a few tests, you’re no further forward, some medical staff may start to say that your symptoms are all in the mind. This is what happened to me for a good ten years, and this experience of being misdiagnosed and not believed, understandably, had a hugely negative effect on my mental health. I started my journey fighting for the right answers, but as the years went by and I hit more and more walls, I started to doubt myself. Were my symptoms really all ‘just’ psychological? Was I making the whole thing up? My mind, becoming more and more broken, started to latch on to these negative opinions from some of my medical team and I began to believe them. I’m thankful that I had my family fighting my corner for me, because if I hadn’t, then maybe I would still be in the same place, with an incorrect diagnosis and no support.
When I finally received my EDS diagnosis (and the other diagnoses that then came after), it felt like a huge weight had been lifted off my shoulders. I know it probably sounds like a cheesy expression, but I can’t describe it in any other way. I had spent so long fighting to be heard, to be believed and to be understood, and finally those things were starting to happen. The doctors I was seeing weren’t just dismissing me as being anxious or depressed (although they acknowledged these symptoms as a result of my conditions) – they were telling me that there was something physically wrong with me and that I wasn’t going mad! Those first few months after getting my diagnosis, my mental health really lifted and I felt like I could breathe for the first time in years.
It was only when the novelty of getting a diagnosis started to wear off that my next battle began. It started to dawn on me that I had a genetic condition – one that has no cure, no real treatment and one that isn’t going to get any better (and may indeed get worse). It’s a lot for anyone to get their head around and I’d be lying if I said it didn’t impact on my mental health. It’s pretty overwhelming to look at the rest of your life and accept that you will never be well, but I’ve been working on that acceptance a lot over the last few years because I think it’s vital to me maintaining stability in my mental health. People often see acceptance as giving in, and for a while I felt like that was what I was doing. But after talking things through with my doctors, I realised that accepting my situation was actually a positive step towards learning to live with the limitations I had.
I don’t see this journey to acceptance as finite – I think it’s going to be something that goes backwards and forwards throughout my life, as new situations and symptoms come about. But rather than fighting my body and waking up every day wondering when I’m going to get better, I’m learning to accept that this is how my life is at the moment and trying to make the most of what I can do. Of course, being unwell and in pain every day is still going to affect my mental health though. I get very depressed and frustrated by my body’s restrictions and seeing other people do the things that I desperately want to do. It’s like my brain and body aren’t quite in sync – my brain wants to do all these amazing things, but my body just can’t keep up. And that’s always going to be hard to live with. I also get very anxious about things – I worry about my future and how I will cope as the years go by. And it can be scary when my symptoms get worse or a new symptom crops up. We trust our body to keep going and keep doing the things it needs to to keep us alive, so when those things start going wrong, it can be terrifying to feel so out of control. I don’t think that’s something that will ever become easier.
But alongside all the negative ways chronic illness has affected my mental health, I do want to acknowledge the positives as well. Being so unwell for so long has completely changed the way I look at the world. I’ve had a lot of time spent either unable to leave the house or in and out of hospital, and that has really made me appreciate the little things so much more. I get so much joy from feeling the warmth of the sun on my face, hearing the birds sing in the morning, receiving a lovely letter in the post or getting out for a trip to our local supermarket. I honestly think that, without my physical health problems, I wouldn’t appreciate these small things half as much.
So as you can probably see from this post, living with a chronic illness can have a huge affect on mental health and I’m without doubt that my conditions have impacted my own. I fought for a long time to convince the world (and myself) that my mental health was fine – I didn’t want my physical problems being blamed on my mental illnesses. But it has been such a relief to allow myself to accept that I have physical and mental health problems, and that that’s OK. Having my mental health problems and struggling because of my physical symptoms doesn’t make me a weaker person. It just makes me human.
If you want to hear more about Jenny’s experiences along with some other lifestyle bits and bobs, you can find her over on her own blog, Ramblings of a Jaffa Cat.
Thank you so much for shedding some light on this topic Jenny!