Tilde's Healthcare Fundraiser
Bristol, England, United Kingdom
Aim
EDIT- Target for healthcare has been met. I will be donating all surplus funds to the SARSAS who work supporting people affected by rape.
Fund-raising for treatment of Tilde’s chronic physical and mental illnesses
I have been waiting 7 years for NHS treatment, unable to access it, so i am now aiming to raise £1940 towards trauma-specific talking therapy, body work and herbal medicine.
I want to get to a place where I'm not just getting by, where I’m not having health relapses every time I try to do something a little more ambitious. I’d like to work towards lessening the frequency and duration of the periods when I can’t cope or function.
Keep reading for details of what’s it’s all about...
Following 20 years of unstable housing and homelessness, I finally landed safe and stable social housing 2 years ago.
I’m no longer in a semi-permanent state of crisis- this feels like luxury to me, but I still can’t access the healthcare I need. I’ve spent the past 7 years asking the NHS for appropriate treatment, resulting in no real support.
Crowdfunding has its flaws; publicly exposing difficulties and traumas is a painful thing to do, not least because of the trauma itself but also because some things feel better private. I worry that it won't work if I don’t have enough online or social clout. Doing this with the motivation for money as the guiding reason for laying myself so publicly bare feels inherently wrong. Asking for help feels even more difficult and uncomfortable on top of my traumatised sense of self-worth and internalised ablism.
I feel unworthy to ask for financial support when I know we are all struggling under neo-liberalism, in different ways and for different reasons, but I know that our strength lies in solidarity and allyship. Thanks for bearing with me while I explain.
Difficulty Accessing Healthcare via NHS
The National Health Service is a wonderful thing- long live the NHS- but it has been eroded since Thatcher, and the current government are gutting it further. This makes it very hard to get support, especially around certain things.
It is also something of a postcode lottery – Mental healthcare, reproductive healthcare, trans healthcare – all the medical needs that don’t conform to the patriarchal white western medical system we know in the UK, are differentially available across the country. This means that if you happen to live in a place that doesn’t offer what you need, you have no choice and no chance at treatment and support.
In Bristol, where I live, mental healthcare is heavily gatekept; therapy is expensive and poor mad people are at the bottom of the pile when it comes to doling out the funding. To be considered worthy of treatment you must have drastically dangerous behaviour, namely acting with intent on suicidal urges and physically attacking others.
Ostensibly trauma specific therapy is available via the NHS, but in the 7 years I have been asking I have not been able to access it. As I have worked hard in this time to move out of risky and self-harming behaviours, I am increasingly less eligible for any care, despite how my disabilities still impact my wellbeing.
The closest I got was referral to a charity, receiving 12 weeks of lifesaving counselling from Somerset and Avon Rape and Sexual Abuse Support, 6 years ago.
It took 5 years of me complaining of chronic fatigue for my GP to finally take me seriously and refer me to the CFS/ME clinic. The clinic is offering advice on managing my own symptoms, but no treatments.
This is the extent of support I have received from NHS beyond my diagnoses of Complex Post Traumatic Stress Disorder and Chronic Fatigue Syndrome/ME.
My Health Conditions
To explain these diagnoses here’s how the CPTSD Foundation define it:
“Repeated interpersonal trauma is the main cause of CPTSD. It occurs when the child feels they have little or no chance of escape. The symptoms of CPTSD can be life-altering and cause severe disabilities such as many different forms of mental health disorders. The emotional damage that precludes complex post-traumatic stress disorder can lead to prolonged feelings of terror, worthlessness, helplessness, and the warping of the identity and sense of self. Other parts of the body are affected as well as the body’s inflammatory response to the ongoing influx of stress hormones, harming the child’s systems. Illnesses in adulthood are directly attributable to trauma in childhood, such as problems with immune system disorders, diabetes, and heart disease.”
And here’s what Action for ME say:
“(CFS/ME) is a long-term, chronic, fluctuating, neurological condition that causes symptoms affecting many body systems, more commonly the nervous and immune systems. People with M.E. experience debilitating pain, fatigue and a range of other symptoms associated with post-exertional malaise, the body and brain’s inability to recover after expending even small amounts of energy.”
People might not say ‘you don’t look ill’ but they treat you like they’re not taking you seriously when you say you have a chronic illness or disability that they can't see.
The world is set up in an inaccessible manner and that’s the norm, meaning that asking for support to get around or do ‘simple’ things feels like making a fuss or asking to be treated specially. With an invisible disability you’re perceived as demanding because there’s not an understanding of the hard work going on behind the scenes. CPTSD is a life-threatening condition and managing that, surviving that, takes an incredible amount of work. It also takes its toll on the body. To perceive CPTSD as purely psychological is to ignore the resulting brain damage and other related physical problems.
My adverse childhood conditions have also resulted in Chronic Fatigue Syndrome/ME and Irritable Bowel Syndrome, both conditions that require a lot of managing as they have no known cure.
I have mobility issues that many of those closest to me don’t really understand, recognise or acknowledge. The days stuck alone in bed, too exhausted to eat, the days spent just surviving, or the hard work that goes in, all happen in private.
Every health practitioner and medical professional I encounter says it’s amazing that I'm still alive. They are always impressed by, and encouraging of how much work I do, and how far I’ve come- it’s a full-time job, just to get by.
There’s no panacea for any of my conditions. I have a sleep schedule, dietary restrictions, herbal medicine, journal every day, weekly counselling. I have done years of research and worked hard with support from my counsellor to apply the practices and regulating skills I have learned. It’s exhausting and I’m extremely limited in where I can put the little energy I have, or else, I'll wind up incapacitated for days. I have changed my whole lifestyle in a bid to heal myself- because I got to the point where I realised that I was going to die if I didn’t do this work.
I nearly did die, more than once.
Treatment
“After trauma the world is experienced with a different nervous system. The survivor’s energy now becomes focused on suppressing inner chaos... These attempts to maintain control over unbearable physiological reactions can result in a whole range of physical symptoms, including fibromyalgia, chronic fatigue, and other autoimmune diseases. This explains why it is critical for trauma treatment to engage the entire organism, body, mind, and brain.”
― Bessel A. van der Kolk, The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma
Based on this holistic understanding of care these are the treatments we are looking at:
Therapy: Working with a psychotherapist we will focus on minimising the devastating consequences of complex trauma. Therapy is a safe place to establish and practice the kind of trusting connection that is central to recovery from trauma. We will use Narrative Exposure Therapy and Emotional Freedom Technique to release negative and fearful beliefs and reframe my lived experiences, whilst moving towards hope, compassion, optimism and an inner sense of safety.
Body work: Exposure to trauma leads to a cascade of biological changes and stress responses. I will work with an experienced Shiatsu and Craniosacral therapist to strengthen my immune system, support my hormonal and central nervous systems, ease chronic fatigue, muscular pain and stress, and aid relaxation and healing. This would also be a space for working on feelings of safety and trust within my body and for a deepening return to my body following years of dissociation.
Herbal Medicine: As a student of herbal medicine, I understand the tremendous amount of support that plants can offer the body/mind. I am lucky enough to be studying under a qualified medical herbalist that specialises in PTSD and will give me proper herbal consultation. She will prescribe and provide herbs that can help me feel safe or establish boundaries, ones that nourish and restore the adrenals, ones that will help to bring me back into my body. Herbs that tone and relax the nervous system and ones that promote sleep in order to heal and integrate more deeply. Herbs to heal and repair the gut and to flush out accumulated stress hormones.
(I have included links to information about each of these therapies at the bottom of the page.)
Outcomes
Managing my physical and emotional health is a full-time job that I must do to survive.
Apparently, I'm doing relatively well- and yet I’m still moving through regular cycles of complete incapacitation by my illnesses. I have crises that last days or months. I can’t commit to anything without the caveat that I might not be able to do it, due to sudden and unpredictable changes in health.
I’d like to work towards lessening the frequency and duration of the periods when I can’t cope or function – towards a ‘life worth living’.
It’s about continuing along a trajectory of wellness now that I am in a stable enough position to go into deeper trauma work. There may not be “full recovery” from these conditions, but there is management and there can be improvement.
Thank you so much for reading. Any support you can offer towards paying for the treatment I need will be hugely appreciated. Together we are strong. Love and gratitude.
Break down of expenses for 12 weeks of treatment:
Psychotherapy at £55 per hour- £660
Bodywork at £65 per hour- £780
4 herbal consultations and herbs at £65- £260
Travel to and from appointments- approx £240
Total £1940
“The brain-disease model overlooks four fundamental truths: (1) our capacity to destroy one another is matched by our capacity to heal one another. Restoring relationships and community is central to restoring well-being; (2) language gives us the power to change ourselves and others by communicating our experiences, helping us to define what we know, and finding a common sense of meaning; (3) we have the ability to regulate our own physiology, including some of the so-called involuntary functions of the body and brain, through such basic activities as breathing, moving, and touching; and (4) we can change social conditions to create environments in which children and adults can feel safe and where they can thrive.
When we ignore these quintessential dimensions of humanity, we deprive people of ways to heal from trauma and restore their autonomy. Being a patient, rather than a participant in one’s healing process, separates suffering people from their community and alienates them from an inner sense of self.”
― Bessel A. van der Kolk, The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma
What is CPTSD?
What is ME/CFS?
Narrative Exposure Therapy and more about it here
Craniosacral Therapy and more here
This project successfully funded on 31st August 2022