Wheelchair Vista on the lasting effects of being doubted

Many of us with long term conditions struggle to accept that we can no longer live life as we used to. It took me almost ten years.

I carried on working for longer than I should. A resident at the care home I managed said; “It’s doing you no good keeping on working. Why don’t you reduce your hours or stop altogether?” She saw that I could not stand for long without leaning against a wall. Staff noticed that I always relied on the lift and was often in urgent need of the loo.

When I had time off work for minor surgery it had to be extended due to massive bruising sustained in a car crash. This was soon followed by investigations for IBS and a referral for knee surgery, which culminated in my employment contract being ended.

After numerous consultations with specialists, who were honest with me about the available treatments, I understood that my body was no longer going to function as it had. Nonetheless I was listened to, given choices and, most importantly, believed.

I hated not working and hoped to return, however a bad reaction to chemotherapy treatment for cancer led to severely reduced lung function and worsened fatigue. Finally, I accepted that I would never work full time again.

My children and then-partner were supportive. We discussed the possibility of a lung transplant but the consultant made the decision for me: a transplant was not appropriate. I was fine with that, having already adjusted to using a mobility scooter to get around. Then my relationship ended and I struggled with daily chores – I was permanently exhausted and out of breath. Upon asking social services to increase my care package I had my first experience of being disbelieved.

My original care package during cancer treatment was awarded swiftly and I expected a similar process – I was in for a shock. The social worker’s premise was that because I was still seeing consultants and surgeons that there must be something more they could do. Despite explaining that a lung transplant had been ruled out she insisted upon another referral.

Not being believed had a profound effect. Despite my background as a Clinical Nurse Specialist I began querying both my diagnosis and clinicians’ decisions. Instead of being secure in my choices I felt unsettled and confused. Maybe I hadn’t followed through on some possible options? Talking to nurses with the same expertise as myself, I asked ‘Should I have a transplant?’. All confirmed that both age and the complexities of my other health conditions excluded surgery.

Deep down I knew they were right, yet I was being pushed into checking and double-checking. I still feel the emotional pain this confusion caused. Why couldn’t this social worker understand? Eventually a strong letter from my Respiratory Consultant stopped the bullying but I was left traumatised.

Other incidents with the same social worker triggered a formal complaint. When allocated a new social worker the enhanced care package I needed quickly followed. The relief was enormous and my quality of life improved substantially.

“…disabled people’s need for social care puts us in a dependent position. The choice we face is stark: seek support and risk being discredited or carry on as usual and struggle with limited life choices.”

Eventually increasing back pain meant I could no longer comfortably use my scooter. Fortunately I got a grant to buy an electric wheelchair, however my flat was not wheelchair accessible. The wheelchair lived in the car and had to be dismantled and brought inside for charging. My need for an accessible flat was greater than ever, however I had already been on the waiting list for eight years. None of the properties viewed during this time were wheelchair accessible.

By chance I was offered a perfect flat, although in different London borough. The Care Act dictated that my care package should move with me so I had no reason to worry. However, securing the care package became a dystopian nightmare. The new borough required confirmation of my circumstances from consultants who no longer cared for me! Most of the surgery undergone during my initial time off work was done privately; some treatment also took place when I lived in the US – I don’t have the money to access the information they require.

A referral to another Respiratory Consultant led to me being discharged, as I don’t qualify for continuous oxygen – the one treatment that might reduce my breathlessness. The social worker’s response: “We may not be able to accept that.” I’m back in the trauma of not being believed. Each social worker visit left me more distressed.

My professional work has included being an Expert Witness in several court cases – I’m used to being believed and respected. Finding myself in a parallel universe where my skills and knowledge are disregarded is frightening.

Relationships are based on honesty and trust. In most cases we choose who to have relationships with, but disabled people’s need for social care puts us in a dependent position. The choice we face is stark: seek support and risk being discredited or carry on as usual and struggle with limited life choices.

Asking for care creates uncertainty. The imbalance of power can lead to abuse of process and of the relationship between social worker and client – we have little say in the process. My personal experience of two different London boroughs is borne out by conversations with other disabled people – being disbelieved is sadly all too common. Being doubted causes mistrust in what our body is telling us; this is dangerous. My first sceptical social worker caused emotional strain that worsened my IBS and I lost a great deal of weight.

Within three years of leaving work I was prescribed morphine patches for pain. Scans showed the consultant how damaged my spine was – he never once questioned the severity of my pain. Three months later I was discharged from his clinic, feeling validated and with my pain well managed. This is how good medicine is practised. During nursing training we were taught: ‘Pain is what the patient says it is, where they say it is and how severe they tell you it is.’ I followed this mantra everyday in my nursing practice; it is patient focused, ensuring that nurses listen and act accordingly.

What has happened to that level of compassion in social work? I have been forced to argue my case against someone without the clinical skills or qualifications to understand my condition. They don’t inhabit my body; they don’t feel the pins and needles in my hands that prevent me from gripping things properly. They don’t have 40% lung function and don’t know what it’s like to feel constantly fatigued. They are NOT me.

Whenever I’m disbelieved, personal doubt resurfaces. Fortunately I have learned enough therapy techniques to stop the broken record and my friends support me against the onslaught of cynicism – I’m able to remain reasonably balanced. Yet a friend in similar circumstances copes by self-harming and many others drink to blot out the disbelief.

Managing the rejection of my true life situation has left me exhausted. The unnecessary trauma has made me increasingly angry. A benefits system that constantly questions someone’s fitness for work, disregarding incurable conditions, is an outrage. The power that social workers have over disabled people’s lives is insufferable. A government that believes in austerity and cutting services is inhumane.

There is a better way. Trust disabled people to know their own bodies and what support they need. Belief should be the default position unless contradicted by evidence. We need a National Independent Living Fund linked to Support Money (benefits) by a Holistic Assessment. Combine ESA with PIP/DLA so that those awarded the highest support are automatically granted a number of social care hours per week.

Such reform would provide disabled people with a guaranteed level of care. It would promote dignity and permit disabled people to have a greater level of choice in their lives. How this would work is another post entirely.

Wheelchair Vista, is a blogger and disability activist. She writes about her life and issues that affect disabled people. She also tries to pass on some of the knowledge she’s gained along her journey.  Read WheelchairVista’s blog .

Find out more information about the Chronic Illness Inclusion Project from Centre for Welfare Reform.