#WorldMentalHealthDay: Trauma and chronic illness

For #WorldMentalHealthDay this year I’ve written about PTSD in general, and then more specifically about trauma due to experiences as patients with chronic illness.

There are many myths surrounding PTSD, which I think stop people recognising it and getting support. If we’re more aware, we can look out for each other and support each other, because I think it’s a lot more common than people realise.

I also think general health professionals need to be more aware of trauma related to illness and treatment (otherwise known as iatrogenic PTSD), so they can understand that traumatic experiences might affect trust and the way we use (or avoid) the health service.

N.B. This blog post might be triggering. If you need support, see these resources

What I’m not going to do is list what sort of events or experiences cause PTSD. Not seeing the trauma on a list like that can make us think that what we’ve been through isn’t serious enough but there shouldn’t be a hierarchy of trauma. If bad memories are affecting you, it is a valid cause of trauma. It’s more helpful to look at what PTSD feels like, and how to get and give help and support.

Symptoms of PTSD

• Re-experiencing. Someone doesn’t necessarily have flashbacks, instead they may have nightmares, repetitive distressing memories, panic attacks, or distressing physical sensations connected with the trauma.
• Hyperarousal (feeling on-edge), which often leads to irritability, angry outbursts, sleeping problems, and difficulty concentrating.
• Avoiding people, places or situations connected to the trauma.
• PTSD can also cause depression, anxiety, suicidal thoughts, self-harm and addiction.

Other facts about PTSD

From NHS Choices:

• Symptoms can either develop straight away, or can be delayed until years later.
• People who repeatedly experience traumatic situations may be diagnosed with complex post-traumatic stress disorder (cPTSD).
• PTSD can come and go, with periods of it being much worse or free from symptoms.
• PTSD develops in about 1 in 3 people who experience a traumatic event or situation.
• A history of depression or anxiety, or not getting much support from family or friends, can make people more susceptible to developing PTSD.

PTSD related to illness

Before continuing I’d like to make it absolutely clear that I’m talking about trauma as a result of our ill health. There have been theories about M.E., fibromyalgia and chronic pain conditions being caused by childhood trauma but they have all been disproved by research.

Avoidance of health professionals and health services seems to be very common in the people I know on and offline, even if this isn’t due to trauma. GP-phobia, or GP-avoidance, is something I’m guilty of, with sometimes serious consequences of neglecting my health. I also get very anxious and don’t sleep the night before appointments, re-living the experiences in my head all night, even when I’m only going for something like an ear infection. If you’re a GP-avoider too, you could always get things checked out at your pharmacy, as they’re trained to recognise what you can treat yourself and where you need to go if you can’t.

All this means getting help for our trauma can be really difficult if it was surrounding medical treatment, neglect or emotional abuse, because it’s a huge risk to trust the health professional we need to go through to get support. Over the years I’ve inadvertently kept on going back for more trauma, being treated badly every time I asked for help, not being believed and the life-destroying consequences of that over and over again with each relapse, so that’s my complex PTSD. Even a bad bout of pain or post-exertional malaise (the main debilitating symptom of M.E.) is enough to be triggering for me and brings back all the bad memories.

I hope that there is now more compassion for people with our illness and what we’ve been through but that’s still not always what we experience. Even if it’s frustrating that you can’t cure us, be mindful of how you talk and act, as memories of damaging and harmful conversations can stay with us for a lifetime. Consultations need to happen in a way that isn’t triggering for patients with medical trauma, and a good start is “I believe you” and showing compassion for our experiences and our preferences.

I would recommend talking to your GP about it, but as I haven’t even managed to do that myself yet, I know I’m recommending something that’s really difficult. In some areas it’s now possible to refer yourself to talking therapies via NHS Choices  and there are now some NHS-approved online therapies . I was referred via a local NHS “Living Well with Pain” course to a clinical psychologist and wasn’t aware that I have problems with trauma until I started talking to her about how terrified I am about going to the doctor’s and telling her my experiences, and then it all made sense. It helped me that this service was completely separate from psychiatry, the CFS/M.E. service and my GP.

Writing and my voluntary work with Action for M.E. really helps to positively heal my trauma but sometimes it’s more like poking at a wound, particularly some of the unhelpful, inconsiderate conversations and posts on social media from other people with M.E. who really ought to know better than “I’m more ill than you/I’ve had M.E. longer than you”. Stop triggering each other, dognamit!

The memories will never go away but I’m slowly learning how to cope with them, to reduce the effect that being triggered has on my health, and to help me look after myself better. I haven’t written specifically about my traumatic health experiences but perhaps I will in a future blog post. What’s important for now is that we’re all more aware of PTSD.

Help and information

• Sources of urgent help in a crisis
• PTSD UK: Lots of info about PTSD, treatments, and helping someone with PTSD (including what not to say)
• The Mighty: When Chronic Pain Leads to Post-Traumatic Stress Disorder
• Refer yourself to talking therapies via NHS Choices
• NHS-approved online therapies

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