I shy away from talking about the emotional symptoms of my illnesses simply because there’s still a perception amongst some people that M.E. is a psychological disease and I don’t want to re-enforce that myth. The slightest hint that being chronically ill affects my mood and I can hear the “I told you she was depressed” whispers from my bed.
Of course being chronically ill affects your emotions. You’d be inhuman if it didn’t. The boredom, the isolation, the frustration, the hopelessness, the wearing never-ending struggle with pain, nausea, dizziness, exhaustion, weakness and 50 other symptoms sucks. But I am not depressed. I had clinical depression throughout most of my teens, I know what that feels like and know for sure I don’t have it now. Being fed up, overwhelmed, at my wit’s end and downright sodding miserable some of the time is not depression – it’s a normal reaction to a shitty situation.
However, my illnesses can and do cause physically-induced “emotional” responses. When mast cells degranulate they affect neurotransmitters like dopamine and seratonin, both of which affect mood. The subsequent increase in heart rate, widening of blood vessels, drops and surges in blood pressure and production of adrenaline cause feelings of intense anxiety. These symptoms mimic a panic attack, which was the diagnosis I was given for years every time I reacted to a drug even though I didn’t have anxiety at any other time. If only I’d had my tryptase levels measured during one of these events we would have known it was an allergy response driven by my immune system, but the second you’re given a psychological label the medical profession stop looking for a physical cause.
My M.E. causes what’s termed “emotional lability”, a spectrum of emotional symptoms which vary from patient to patient and which are found in many other neurological diseases eg. Multiple Sclerosis, Motor Neurone and Parkinson’s. I find my own personal emotional lability really hard to describe. When I’m over-tired I initially feel flat and un-emotional. I often go pale and become monosyllabic. I then start to feel weepy, like I could suddenly just burst into tears for no good reason. I find it difficult to cope with decisions or the slightest stress. I can become intensely irritable and snappy. It’s a bit like having sudden onset PMT over which I have absolutely no control. The only thing which makes me feel better is complete rest, lying down in bed in the quiet, often for several hours.
Emotional lability has a physical cause. Treating it with anti-anxiety meds or anti-depressants isn’t the best solution – you have to look at the physical reason and treat that. I know if I do too much I risk being an emotional wreck for a few hours, which is why pacing when you have M.E. and not doing the whole “boom and bust” thing is so important. I know if I have a mast cell reaction I’m going to feel like I’ve popped a couple of speed pills. When I could tolerate H1 anti-histamines they really helped but sadly now I react to them I just have to ride the reaction-induced-anxiety out, although I find having a nice warm bath does help along with distraction techniques like doing some crocheting (after I’ve stopped puking, shaking and fainting obviously 😉 ).
After all these years I still find the symptoms of emotional lability hard to handle and difficult to admit to for fear of being thought nuts. For me they come on really quickly – one minute I’m feeling fine, the next I feel like I’m going to collapse in a heap on the floor sobbing my heart out like someone’s died. Or in the case of a mast cell reaction, one minute I’m fine the next I’m pacing the floor like a raving loony tunes and feeling like I want to rip my skin off.
The good thing for me about emotional lability is that it passes. Unlike depression which follows you around every second of every day like a huge dark cloud, the symptoms of EL are transient and will go when I’ve rested enough or when my mast cells have stopped having a hissy fit. I just have to remind myself of this fact when I’m in the middle of a melt down which is oftentimes easier said than done!