Rachel's Story

Bound tightly to chronic physical illness can be an unseen emotional weight. Rachel is the only member of her family with Marfan syndrome, yet she grew up unlabelled and unseparated. It was only when she ventured into the wider world that difference was imposed upon her, and she began to feel self-conscious.

"Mental health troubles growing up with Marfan Syndrome. How health problems can cause trauma and health-related anxiety." by Rachel

Over the years I have always struggled poorly with my mental health/anxiety, due to looking and feeling different. I was about eight or nine when I first started to notice this more, when puberty first hit, as my scoliosis had started to show and deteriorate at that point. I was also realising that I was different from other children, due to the amount of hospital appointments I had and time off school.

I never noticed this at home, because I was always treated the same as my brother and sister (who don't have the condition).

I would say I have always been self-conscious of people looking and staring at me, this became more apparent when my scoliosis got worse. I was also always noticeably very tall for my age. I had my growth plates fuse when I was 11, to stop growth. As I was already about 5ft 4in and the doctors didn’t know how tall I would get, so they wanted to do it sooner rather than later because of that. But again, I was always self-conscious of being the tallest girl in the class and it had always bothered me.

I have also been bullied a lot, especially at secondary school, which made me a shadow of my usual self and even more self-conscious. This was around the time that my scoliosis was getting worse, which obviously didn't help my confidence and self-esteem either. So surgery was then being strongly advised.

The bullies obviously highlighted my differences. Which made me, for the first time properly, start to suffer seriously with my mental health. I had started with bad anxiety/nerves and now looking back, I probably was severely depressed. I just didn't know what it was at the time, as it didn't get talked about as much as it does do now. So therefore I didnt realise this, for a lengthly period of time.

This meant I rarely opened up or spoke to many people properly at that time about how I was feeling, which again now in hindsight looking back, I know this would not have been helpful. Thankfully my best friend and I had similar issues so we opened up to each other and I also started counselling for the first time, through school at around the age 13 or 14. So at least I had some sort of talking therapy, instead of keeping it all in my mind, like I had done for so long which wasn't helping me, with poor sleep, loss of hair and severe headaches that lasted for several days.

I left school and my mental health stabilised for a few years around this time, largely due to the fact I was away from the bullies. My physical health also stabilised around the same time, so I felt content and happy.

I had my scoliosis surgery three or four years later, because I was in hospital for so long and at home recovering. My mental health then obviously started to waver again, though I think I did largely ok looking back to that time frame, considering what I had been through. It certainly helped matters, as I had a 6-month-old niece at home keeping me busy and upbeat too!

I had a few stable years from age 21 to 28, here or there. But I was still seriously suffering with my very low confidence and having low self esteem. As I still hear the bullies comments now, they never leave you as you start to believe what they said is true. 

This was compounded by the fact that after my scoliosis surgery, although my spine was now straight, unfortunately a complication now meant my pelvis was tilted. This hasn't helped my confidence and low self-esteem, again people stare at me because of this. I am also an over-thinker and massive over-worrier, which I know doesn't help matters. But it was easier said than done, switching it off when you are suffering internally.

My mental health hit an all time low after I suffered a sudden Type B dissection at the age of 30. I was in the house on my own when it happened and the impact on me was enormous physically and mentally. I thought I was dying, as the pain was that horrendous. My anxiety and nerves were further heightened when I was on the ward, alone during the night. When my pain peaked, as it was so high and I literally thought "this is it, am not getting through this". That's how bad the pain was, no pain relief was remotely taking the edge off and I was so frightened with what was happening to me. I rung my mum and best friend, in hysterics at 3am. I had never been so terrified and I just wanted it to stop.

I hated being on my own from then on in and still do now. My brain goes to worst case scenario mode and "what happens if it happens again and am on my own" as "I may not get to the hospital in time and be seen before it's too late" All rational thoughts, after going through what I have done. There really is no trauma like it, as it just stays lingering in your mind, never to far away. Nobody really gets and understands it fully, unless they have been through it themselves.

I had an emergency valve sparing aortic root replacement with the frozen elephant trunk, nine months later. This again was an emergency and unrelated to the dissection. After I was discharged in 2023, it has been a continuous road to trying to improve my mental health and anxiety. I started counselling again, about a year later. When I realised my mental health, anxiety and severe trauma I had been through, weren't getting any better. Especially so much over the past 2 years, with the heart-related traumas. It was just affecting every aspect of my life and the people around me too.

I find it's a constant battle with Marfan syndrome and the mental health battles that come with it, as it feels like a rollercoaster. Especially so as it feels like living life on the edge, not knowing what is around the corner and what the future may look like. Life I have found, over the past four years in particular, really is too short. I certainly try and live life for now and seize as much happiness as I can, as after all we thoroughly deserve it with everything that we go through!