When Illness Has No Name: Living Through Delay and Loss 🌑
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I have always been sensitive to the energy around me. Like many empaths, I learned early on to over-give and to put the needs of others before my own. As a mother of five, that instinct only deepened.
I once remember sitting on an aeroplane when my son was very little. The safety announcement advised us to put on our own oxygen mask before helping others. I remember thinking there was no way I would ever do that. Of course I would give him the mask first. A fellow passenger told me firmly that I would have to put mine on first if I wanted to keep him safe. That stayed with me, although it took many years for me to truly understand the truth of it.
Looking back, years of ignoring my own limits and living under constant stress slowly eroded my health. The pressure was always on, and eventually my body could no longer keep up.
The Diagnosis Trap
For many years, I lived with illness that was misunderstood and mislabelled. Very early on I was diagnosed with pelvic congestion syndrome, a rare condition. From that point forward, every symptom I experienced was linked back to that diagnosis, or written off as anxiety.
The problem was that pelvic congestion syndrome was only part of my story. The single label meant that other conditions were overlooked for years. This is something I believe many people with chronic illness face. Once a diagnosis is given, whether it is fibromyalgia, diabetes, Crohn’s disease, endometriosis, or something else, it can be incredibly difficult to get medical professionals to look past that and consider what else might be going on.
The Cost of Delay
In my case, I was actually living with three co-existing conditions. Alongside pelvic congestion syndrome, I had Cushing’s disease, another rare condition. My GP described it as “a once in a career diagnosis.” He did put me through for testing, which I am grateful for, but it shows how unlikely most doctors are to expect or recognise it.
On top of this, I seem to have developed an autoimmune-type response to the embolisation treatment I had for pelvic congestion syndrome. I have not received a formal autoimmune diagnosis and am still in the process of gently seeking one. What I have noticed is that often, to receive an official diagnosis, a person has to reach a point of crisis before their illness is recognised.
Blood tests have hinted at what is happening, but they do not tell the whole story. One of my results, for example, came back at 17, when the expected “normal” range was one to ten. Yet I was told that someone with the full-blown condition would usually score around 50. Because of this, my results were not considered to “fit.”
What those numbers did not reflect was the impact of my treatments. I take steroids for adrenal insufficiency, sometimes doubling them in times of stress or flare. I also take medications that calm my immune and nervous systems. Alongside this, I support myself with herbal and holistic therapies that work on anti-inflammatory pathways. These all help me manage symptoms and stay more stable, but they also make it harder for medical tests to reflect what is really happening underneath.
This is where my herbal training became such an important part of my life. I began studying herbs as my health first started to fail, partly out of deep interest and partly to help myself. It gave me a way to focus not only on illness, but on health and wellbeing too. By shifting from chasing pain relief alone to supporting my immune system, calming inflammation, and working with the whole body, I began to feel stronger.
The years of delay and misdirection still cost me dearly. By the time I finally received the correct diagnosis, my pituitary tumour had grown so large that my entire pituitary gland had to be removed.
Living Without a Pituitary
It is hard to explain how profound the loss of this tiny gland really is. For most people, if something stressful or shocking happens, the body instantly releases steroids to help them cope. My body can no longer do that. Every outside situation must be carefully monitored. Over-replacement is just as dangerous as under-replacement, and the correct balance changes continuously.
Without a natural safety net, I felt completely unable to respond to life on my own. I have experienced multiple adrenal crises as a result — sudden, life-threatening episodes when cortisol levels drop too low. This reality has been one of the hardest adjustments to live with.
Alongside this, I continue to live with the consequences of the embolisation coil in my pelvis. I know that this has been a catalyst for many of my health issues, including the autoimmune response. I have had to fight for the coil to be removed, despite doctors warning that the operation carries significant risk to my life. The process has forced me to weigh risk against quality of life, and to recognise that full healing sometimes requires us to step into difficult decisions.
Sharing the Journey
I do not want to come across as someone who is teaching from a place of sickness without working on myself first. The truth is, this is an ongoing journey, and I am still in the middle of it. But I also know that it is important to share honestly from where I am.
There was a time when I reached complete despair. Every day was filled with too much pain, and my mental health was at its lowest point. I could not see a way forward, and life felt unbearably heavy.
Through dowsing and the connection with my spirit guides, everything began to shift. My health and life have improved in what I can only describe as quantum leaps. I now have more moments of clarity, peace, and even deep satisfaction. There are times when I feel I really do have it all, and I treasure those moments as signs of the healing path I am walking.
What has also carried me through are small rituals. Blending creams in my kitchen, creating calming herbal remedies, or pausing for a grounding practice became anchors when everything else felt unstable. These little acts of care reminded me that I could still shape beauty and healing in my own life.
For me, this is the heart of Starlight Rituals. Healing is not only about big turning points or diagnoses. It is also about the small, sacred practices that help us keep going — the rituals that remind us of our worth, our connection, and our light.
And I want to share this journey, because I know I am not alone. Every household seems to have someone living with chronic, often “mystery,” illness. My hope is that by telling my story, I can pass along some of the insight, internal wisdom, and healing practices that have helped me along the way.
🌠Today’s Reflection
✨ If I looked at my life not only through the lens of illness, but through the lens of wisdom gained along the way, what new perspective might open up?
🌸 Closing Affirmation
"Even in struggle, I am supported. Even in loss, new pathways open before me. I choose to walk them with courage and trust."