Living in the Dawn

Health Update - August 2025

At the time of writing, I have been diagnosed with secondary Addison’s Disease or adrenal insufficiency for just over two and a half years. These two and a half years came after eleven years of ill-health that was both unexplained and, most frustratingly, not adequately explored. In this time, I went from eighteen to twenty-nine. In many ways, the ages twenty-nine, thirty and now thirty-one (as of two days ago) are my first authentic flavour of health I have had whilst existing in an adult body. My aim in writing this post was to spend time reflecting on my health and ultimately my life, which has progressed since being diagnosed two and a half years ago. This felt especially necessary given my last post of this kind was written just after my diagnosis. I feel hesitant to start, however. I remember how easy that previous post was to write. It was simple, really. This ease came from just how clear I was on my feelings. It was joyous to be able to feel the sharpness of my brain, to wake without the sensation of immediate crushing fatigue. This post is a little harder to begin.

In every way that matters, my life has only improved in the past two and a half years, since my first dose of hydrocortisone, really. I look back on the energy I felt in those early days with the sort of fondness a grandmother might have for her very young grandchildren. I had no clue, really, just how much energy was out there to be felt. Now, I work full-time, whilst also studying for my PhD. I have a gym membership I actually have the strength to use, and perhaps most shockingly, I have an active social life. I have not had a free weekend for the past two months, and at the end of such a busy period, I feel, miraculously, fine. This was unimaginable in my life before. A single interaction could floor me for a week or more. My memory is also sharper, my eyes are no longer painfully dry, and my migraine frequency has reduced drastically. It is both exhilarating and heartbreaking to realise that I woke up feeling stronger on my 31st birthday than I had on any birthday in my entire twenties.

Life at 31

 These gains are phenomenal, and trust me, I remain grateful every moment of every day. I feel I need to say that, to insert that disclaimer here, before you, the reader, think me to be some brat as I say that yes, life is infinitely more livable and electric, but this is wholly and solely dependent upon the balance, regimen and control I put into maintaining my equilibrium. I suppose the trajectory of my feelings was perhaps inevitable. In the months just before my diagnosis, I would have been utterly thrilled to think I could ever have such health. If you had told me that the cost was a round-the-clock, unceasing balance of my internal homeostasis, I would have made the trade without thinking twice. Of course I would have – anyone would. Now that I have settled into this health, I find myself feeling greedy. I now want not only health but health without surveillance. I want to care about my health the way I see my friends caring about their health. I want to keep gentle tabs on my hydration, sleep, and diet without knowing that a slight deviation in any factor could decimate my plans for a week. The joyous fact is that this goal, health without surveillance, is probably not a completely illogical goal to have. At the time of my diagnosis, my initial endocrinologist had mentioned that the severity of swings with Adrenal Insufficiency/Addison’s Disease symptoms may lessen as more time passes since my diagnosis. She told me that my body would have to learn, very slowly, that it was never on the brink of a full-scale attack. I can feel this change in my body, perhaps most clearly in the last six months. Missing my medication dose by an hour no longer results in a crippling headache and nausea, but rather a slight dryness in my mouth. Running a temperature no longer threatens to put me in the hospital, regardless of how much additional medication I take. My swings are becoming less severe, and with this lessening intensity, my life is expanding. I tell you this now, before I describe how the last two and a half years have been, so that you know where I am right now. So that you know what I did not back that – it gets better.

Depending on the day, I think I am either cursed or blessed to have the brain that I do. I am autistic and have an exceptionally organised way of living. From the outset, this has been extremely useful. I never submitted schoolwork or college work late, my room was always clean, and I never forgot anyone’s birthday. Inside, it is more of a mixed experience. With the inability to unsee all the work that needs to be done, all the imperfect details in the world, comes the inability to relax – to let go. When it comes to Addison’s Disease, which centres around the stress hormone cortisol (namely, never having enough of it), being unable to relax means running on a low to medium level of stress at all times. Yet my brain is most helpful in managing the condition it potentially created because Addison’s Disease requires strict self-management to master (if one ever can truly master it). The early months after my diagnosis in January 2023 were consumed by logging every detail of my life that could be causing me stress. I found little to no information from anyone else who has Addison’s Disease while being autistic. So, I knew that for me to learn what my body perceives as stress, I would have to look at my everyday movements with microscopic detail. I am immensely grateful that I did this. I learned more about the micro-functions of the body in that first year than I ever would have before.

Now, I know what all reactions mean. Additional sweat in some parts of my body indicates low cortisol, and other parts indicate low sodium levels. A headache in my right temple means low blood sugar, whilst a headache in my left is usually connected with my period. I have a rigorous grading system for rating my sleep, for understanding the depth of my dreams, and therefore, how rested I can expect to be at all times. I am grateful for this detail, for this knowledge – but I am also so terribly sad that I have lost years of my life to having to learn this. Thankfully, it gets a little bit easier as the months pass. My thought processes can become more and more automatic. 2025 has been an accurate indicator of this, and my biggest year of progress so far. In July of 2025, I had a short synacthen test – this is the test that is used to diagnose adrenal insufficiency. My endocrinologist is hopeful that I might claw back some pituitary function over time, and he wanted to check this out. I have had two Synacthen tests – one to diagnose me when my levels were low, and one a year later, and my levels were even worse than when I was diagnosed. In July, I learned that my body is now naturally increasing the amount of natural cortisol it produces. In short, I am healthier. I am stronger. I need fewer steroids. I might get stronger still in the future years. Outside of the outpatient hospital that day, I cried. I cried with such abundantly proud tears that I can still feel the pride in my chest. I did that. I worked to build my health back piece by piece. I fought for my twenties, and this was the first blood result that was improving, which showed that this constant trying might have been worth it in over a decade. 

So, right now, life is looking up on the adrenal insufficiency front. This has very real-life applications and benefits. I am no longer rocked by small shocks and hurts. I exercise. I actually use my gym membership. I work, I study, I write, and I don’t feel as though I am slowly desiccating. I don’t know what the future holds, really. In many ways, I am behind my peers. I spent my twenties ill and therefore have little to no savings, and am now, at thirty-one, beginning afresh. I feel discomfort about this, but not unhappy. Discomfort about my stage of life is nothing compared to the anguish of years of ill-health – there’s no comparison really.

There’s more that I could share here, and in time, I might. My health journey is still just that journey; it will be ongoing and hilly, and probably, I will shed more tears about it. But I have more energy for those tears, and as a result, I have more energy for laughter too. And that’s a gift, whatever may come.

Until next time,

Jens xx