The Harsh Reality of Living Without any Medical History

I am an adoptee born in 1974 and adopted 8 weeks later. I speak from lived experience of inheriting a genetic condition, Ehlers Danlos Syndrome (EDS) from my first mother but only discovering this in my 40s.

I’m 49. When I look back at my life up to now, I can pinpoint times that I struggled with my health. Times that, if I had arrived in my adoptive family with a full medical history, would have been easier to manage, quicker to diagnose and come with a lot less worry. 

The impact of unexplained physical symptoms

As a child, I had double-jointed thumbs which I would contort into odd shapes to amuse my school friends. On the netball court, my weak ankles, flat feet and hyper-mobile joints led my feet to ‘collapse’ at times, giving me shooting pains. I just thought this was normal but when I was 13, with continual knee pain and bunions at such a young age, my mother took me to a podiatrist for gait analysis. I was given custom orthotics to put into my shoes to correct my fallen arches and over-pronation. 

At age 14, my teeth were crooked and I had a centre shift—my two front teeth were not central in my mouth. My dentist removed all 4 of my eye teeth to make more room, as my mouth was overcrowded. I had a fixed brace fitted top and bottom, metal rings moulded around all 4 molars and I had to wear elastic bands which stretched from my top to bottom brace – only to be removed when eating.

Pregnancy and childbirth—unexpected complications

Giving birth to my first child, pre-diagnosis, I had an emergency C-section because she was in undiagnosed breech position. I’m certain that she turned in the middle of the night after I was induced, due to having pre-eclampsia, and waiting for labour to start. I experienced awful pain and looking back, it might well have been that—EDS makes for very stretchy insides I later discovered. My episiotomy was very slow to heal, another facet of EDS which I just didn’t know at the time.

The effects of anaesthetics

When I gave birth to my second daughter, in Belgium, I had asked for an epidural. After her forceps delivery, the placenta would not arrive. That turned into a medical emergency as they discovered there and then that I had placenta acreta, where the placenta grows into the lining of the uterus and won’t come away on its own. I had to endure manual extraction, which was traumatic. And still painful, despite the epidural. I kept telling the medics “I can still feel!” I don’t think they believed me. Had they and I had prior knowledge of my EDS, we would all have been able to navigate round the fact that another feature of EDS is that we react differently to anaesthesia as our tissues are too stretchy to hold the anaesthetic and it doesn’t seem to stay where it is needed. When my daughters and I go to the dentist for any fillings or extractions, our dentist is now aware that she needs to give us more local anaesthetic and to give one with less adrenaline in, as that gives us the shakes. 

Our mental health: adoption is trauma

At university, I was diagnosed with clinical depression. I was treated with both counselling/talking therapy and antidepressants, but these didn’t really help. I didn’t even really feel comfortable with being diagnosed as ‘clinically depressed’ because deep down I intuited that something was just and has always been ‘off’/wrong… What was glossed over was the fact that I am adopted—not was, am—and being adopted has affected me lifelong. Even though in counselling sessions, I found myself mostly talking about my relationship with my adoptive mother and how difficult I found that growing up, my being adopted in and of itself was never addressed. Looking back, it was as if it simply was not even relevant – neither to my life, to the counsellor and certainly not to my mental health.

Adoption: the elephant in the treatment room

I do not believe that I was depressed, not clinically. I believe that I was traumatised. No pills could ever have helped me. I did not want to take pills. I wanted to be able to express, for the first time in my life, how I felt. I wanted to be heard. To be seen. To be validated. 

I found myself in the same situation many years later, after the birth of my first child. I felt elated to have started my own family, and I knew that I was not suffering from any kind of postnatal depression, but I went into the hospital to speak with one of the post-birth counsellors there as I just couldn’t shake the ‘lost’ feelings I was having.

Again, a hopeless exercise. I went once and I remember tears streaming down my face as I told the counsellor how disappointed I was that I had to have an emergency C section as my baby was breech – that I lost the chance to give birth naturally and to be able to see my baby being born, coming out of my body—so I knew she was really mine, and of me. I told her how important that was to me. She just sat there. She was not qualified to handle what I was telling her.

Where could I find support post-partum?

So I left the room, sat in my car in the hospital car park and cried. I didn’t know who to turn to next. So I stuffed all these feelings down and they didn’t resurface until a couple of years after the birth of my second daughter. 

I was living in Belgium with my family at the time. My husband worked away seventy percent of the time and I was separated from family and friends. We spent five years in Belgium. I was struggling. I saw my GP, who diagnosed me with Generalised Anxiety Disorder (GAD) which might as well have been ‘I have no clue what is wrong with you so let’s call it a generic anxiety disorder and send you on your way with some antidepressants.’

Trying to take charge but the issues are still not recognised

The tablets made me spaced out and dizzy. So dizzy that I had an accident. I fell off my bike because my balance was so bad and my head so fuzzy, and hit my head on the kerb. I went to the hospital. I was okay, but I had had enough. I stopped taking those tablets and have never taken any again. I knew something was wrong. Not with my head, but with my life. I knew it was time to try to talk about how I felt, my adoption, my adoptive mother. All of it. 

I found a psychologist. We conducted our sessions in a hybrid of French and English. He listened. He let me cry. He held out tissues, but there just was no solution. I felt like he couldn’t fix me. Again, we focussed on my struggles with my adoptive mother, rather than the issues of being adopted and taken away from my mother as a baby. So I gave up.

EDS diagnosis and the consequences

A third attempt to try to sort myself out (and understand myself) arose from my Ehlers Danlos diagnosis in 2017. EDS is a genetic disorder where the structure of connective tissue & collagen is abnormal due to a gene mutation. This results in abnormally fragile and hyper-extensible tissues throughout the body which can lead to a range of multi-systemic symptoms and have a widespread effect on the body. Joints are hyper-mobile, or ‘loose’ and unstable, leading to overly tight muscles, joint pain and fatigue.

Looking to my first family for answers

As I was showing signs of Vascular EDS, which is often considered to be the most serious form, I had to see a geneticist to undergo genetic testing and ’counselling’ to ascertain which of the 13 types of EDS I had. I had to go through an extensive screening, with many questions about my family history. This was not only upsetting but very frightening.

Even though I am fortunate enough to be in reunion with both of my first parents, I was terrified not only for me, but for my children and, actually, for both of my first parents as I had obviously inherited this condition from one of them. I apologised profusely to my first parents when I emailed them a two-page document I had put together myself, asking about any possible conditions or early deaths in our ancestry from particular diseases or cancers. It was the only thing I could think of doing—to try to take control of my own health and protect that of my daughters.

Finally, some genetic testing—why do we not get this sooner?

The wait for my genetic screening results was fraught. I lost a lot of weight through worrying and this entire process brought many things to the surface for me about what adoptees have to endure without access to or knowledge of our genetic history and medical records. It is not only cruel to deny us access to these records, but it is also a danger to our health and that of our children and we often have to jump through several hoops to obtain these records.

My results came back negative for Vascular EDS, so a diagnosis of Hypermobile EDS was given.

Facing the intergenerational impact

A carrier of EDS has a 50% chance of passing it to their children, so without delay I had my daughters assessed in London to see if I had passed this on to them. They did indeed have the condition. I felt awful. That was all on me. My eldest daughter was 13 and my youngest 10 at the time.

The three of us have all seen a heart specialist, a podiatrist and several physiotherapists over the years to manage our EDS as best we can. Looking back, there were things I could have done which would have helped my girls, or afforded us to be better prepared for dealing with this. But I lacked the knowledge at the time.

Finally, some progress with mental health professionals

In order to manage this newly-diagnosed condition, I was referred to a clinical psychologist for Pain Management. We did discuss how to manage my pain, through pacing, prioritising, postponing, planning and delegating. However, certain traits were recognised by my therapist: my perfectionist tendencies, my need for routine and control of my environment, my people-pleasing and my system being on high alert/fight-flight for much of the time.

It was the first time that someone had suggested to me that I was not depressed, nor was I going mad, but that I was genuinely struggling. Again, we spoke about the difficult relationship with my over-protective, controlling adoptive mother, but not the maternal separation trauma. Mixed emotions followed—a combination of relief, anger and extreme sadness, to name but a few.

In 2022, aged 48, I finally found an adoption-competent therapist. A therapist who specialises in family therapy, but who also happens to be an adoptee. She understands my primary trauma and my feelings around being an adoptee plus the secondary trauma of having an adoptive mother who could not give me what I needed. Who in fact made my initial trauma worse.

What can we learn from my story and what needs to happen for adoptees?

We must have access to our medical history and our trauma must be validated, understood and treated by adoption-competent therapists because, for some adoptees, not only our health but our very lives may be at stake.