As the parent or carer of a child with a complex medical condition or disability – you may have many daily challenges that others don’t experience.

Some of these challenges are not obvious, practical, or easy to explain, as they are tied up in your mental health.

Being the parent of an especially vulnerable child can take its toll on the carer, physically, mentally and emotionally. In some cases, this becomes Post Traumatic Stress Disorder (PTSD) or, more likely, Complex PTSD (C-PTSD) which is caused by sustained, or repeated traumas.

PTSD and C-PTSD can affect parents of children with life-limiting medical conditions, development conditions, physical impairments, and sensory impairments like being Blind or Deaf, along with parents of children with lifelong conditions such as Autism or Epilepsy, and those whose child has been in an accident that has left them with severe injury – although this is not an exhaustive list.

There is very little investigation into PTSD within populations of primary caregivers of children with conditions and complexities that have led to long-term and repeated life-threatening experiences, however, studies have shown “caregivers of children with complex medical conditions face a 4-fold increase in risk for PTSD compared to the general population.”

In this article, we have taken every care to ensure we are using correct words and descriptors, but we will primarily use terminology around having a child with a complex medical condition or disability, with full awareness of the uniqueness of YOUR situation.

How can this cause PTSD?

Post-Traumatic Stress Disorder (PTSD) is a condition that some people develop after experiencing or witnessing a trauma.

The definition of trauma is “a deeply distressing or disturbing experience” and that can certainly include the realities of loving and caring for a child who has a disability of any kind.

Parents of children with a complex medical condition or disability can often experience repeated overwhelming, stressful and traumatic events such as ongoing medical tests and procedures, recurrent emergencies and frequent hospitalisations. The never-ending anxiety that comes from having a child with a chronic condition can be enough to trigger symptoms of PTSD.

You may also battle with authorities and form filling, misconceptions and blatant prejudice, and barriers to your child’s development, education and happiness.

One study found that 87% of parents who have a child under five with a disability felt they are regularly ‘judged’ by strangers as they go about their lives.

The pinnacle of your traumatic experience may have been when you received the diagnosis. Then, had to learn to manage an unexpected set of skills and altered expectations for your child.

One parent said: “The consultant explained that Dillon would be profoundly disabled, both mentally and physically. Only time could tell how much he would develop, if at all. Our world collapsed.”

Carol Glazer shared her story about when her son was born with hydrocephalus, or water on the brain, “All these years later I can still feel the way my face tingled when the doctor told me the news about Jacob. It was the start of a year in which Jacob underwent 12 brain surgeries, two experimental surgeries, and suffered from three brain infections – the first of which, acquired in the hospital at birth and undiagnosed for six weeks, had caused considerable brain damage, particularly to his visual cortex. At the end of this ordeal, we were told that Jacob would likely be blind, he might not walk, and that his level of cognitive functioning would only become clear in the next three to five years.

In an instant, all of the excitement and anticipation of the arrival of our first child suddenly turned to mass confusion and terror. I tried to wrap my mind around the painful reality of what Jacob had been through, the massive uncertainty surrounding his long-term prognosis, and a life we knew would now entail regular trips to the hospital.

I didn’t realise it at the time, but something profound happened to me in those early years of Jacob’s life. I became a different person. More cautious. More prone to worry. Impatient or angry with the wrong people. I wasn’t happy with the person I’d become.

Clearly and unmistakably, I’d experienced trauma.”

And of course, the financial impact experienced can cause additional stress: On average, families including a child with a disability need to meet additional costs of £581 per month. Yet, parents in this situation may have a limited ability to work. This contributes to the fact that a substantially higher number of families including someone with a disability live in poverty.

But… how are YOU?

With so much attention on the welfare of your child, how good are you at identifying and acknowledging your own health issues, especially your mental health?

It is natural for parents or carers in this situation to feel guilt about being open about their own emotional and mental difficulties. Or, reluctant to speak up maybe because you don’t believe anyone can understand what you are facing.

Parents can hesitate to ask for help for fear of appearing ungrateful for their child or lacking in love and pride. Are you worried about giving the impression you are ‘not coping’?

PTSD is not a sign of weakness or a failure to cope. It is a natural, physiological effect of living with trauma. It even creates physical changes to your brain and can result in debilitating physical and emotional symptoms which can affect your daily life.

How to spot PTSD

You’re probably used to letting health professionals, and loved ones, about how your child is. But how many people ask how YOU are?

Assessing whether you – or a loved one – has PTSD in these circumstances involves being aware of the signs and symptoms:

• You may feel constantly ‘alert’, hypervigilant, anxious and unable to relax. Even when your child sleeps.
• You may have nightmares and insomnia, and feel depressed, emotionally withdrawn and wracked with guilt.
• You may experience flashbacks, nightmares or intrusive thoughts about your experiences.
• Your mood may fluctuate and may include agitation, irritability, lack of interest in anything but the child, social isolation or even self-destructive behaviours.

How do I treat PTSD when I’m in an ongoing cycle of trauma and stress?

If the realities of your situation are that your child has a life-long complex medical condition or disability, it may feel like the term ‘POST Traumatic Stress Disorder’ isn’t right.

“We never get to “post” portion of PTSD when living with a special needs child. It’s chronic because it is continuous. We’re always worried about the next doctor’s appointment, seizure, or surgery. We never know what the next call from school will bring, or even if they will get to go that day.

There is never a time when we can take a deep breath and know the worst of it is behind us.

The life of a special needs parent is a continuous cycle of anxiety and trauma. Even on our good days, we worry about when the next bad one will come.”

If this is your situation too, treatment will involve helping you find coping strategies for the ongoing stress, anxiety and distress every day – along with treating your PTSD.

Dr. Jeremy Hirst, an expert in adult and paediatric palliative care psychiatry at University of California San Diego agrees that the recurrent and ongoing stressors need to be treated differently: “Living with uncertainty is incredibly challenging. This level of uncertainty leads naturally to a heightened sense of arousal, needing to be on constant alert since once cannot rely on the child’s body to do things we normally take for granted. Indeed, some of the symptoms of PTSD evolve as a natural reaction to deal with the threats associated with a trauma”.

As such, “the goal of treatment is not to eliminate anxiety, nor would that be realistic or even adaptive, as anxiety has survival functions that allows us to respond effectively to threats. It is expected and understandable that these parents have increased anxiety. However, the fight or flight response is very taxing on the body and is not designed to be on for long or repeated periods of time or it can create emotional and physical strain.” and that’s what can be addressed by treating PTSD.

Step one is accepting that you may have PTSD and that you need, and deserve, specialist help.

Next, it’s recommended you speak to your GP or find a private PTSD therapist.

Also, speak to professionals, support groups and charities connected to your child’s condition and development. See if there is more that can be done to manage your challenges in a practical and immediate way. This will hopefully give you space to address your PTSD and achieve sustainable recovery.

It is possible for PTSD and C-PTSD to be successfully treated and be free from the symptoms it brings.

NICE guidance (updated in 2018) recommends trauma-focused psychological treatments such as EMDR, and trauma-focused cognitive behavioural therapy (CBT). You may also want to explore holistic non-pharmacological therapies, or talk to your doctor about treatment with appropriate prescription drugs.

Trauma can be very difficult to come to terms with, but confronting and understanding your feelings and seeking professional help is often the only way of effectively treating PTSD.

For more support, Contact are a UK based charity, who support all families with disabled children. Their vision is that families with disabled children feel valued and are strong, confident and able to make the decisions that are right for them.  Scope (a disability equality charity in England and Wales) also have a range of resources on their website which may be of use.