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Part one of my diagnosis journey

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Why open up discussions about functional disorders?

After a while of pondering over to even post about my condition, I realized I’m here to help others suffering from long term health conditions whether that be physical or mental health. My journey is the reason I’m blogging today, it’s the reason I’ve learned from mistakes, taken action over my condition, and grown into a more self-aware individual. It is the basis for the knowledge I’ve gained about living with chronic illness. I will admit my nerves around discussing functional disorders, as I’m sure a lot of people are aware there is a stigma attached and a lot of us feel we cant talk about it or even accept it ourselves. Being honest about my journey and the reality of my condition is the only way to help and change opinions on functional conditions. Bring awareness to the reality that these conditions are as debilitating as any other chronic condition. I want to welcome us into a space of acceptance and understanding in the community.

A short snippet of my journey

 I became ill at age 12, I was diagnosed with multiple stomach infections and gastro trouble, but over the next few years developed more concerning symptoms, I started with long-lasting fatigue, weight loss, loss of appetite, loose stools and a lot of anxiety and depression. Doctors said I needed a psychologist and being a teenager I hated the idea of believing this was all mental. In truth it certainly was not, this was far more than depression, I was experiencing fainting and spaced out episodes also. I was deteriorating rapidly, I missed out on school and rebelled with my emo style and hated pretty much everything and anyone, especially doctors. The mental strain was terrible, I couldn’t sleep or eat properly and everyone wanted answers but every doctor had a different idea. I was diagnosed with gastro reflux disease and irritable bowel syndrome by the age of 16, but every other symptom seemed unclear. This is a familiar story with FND sufferers it can take years to diagnose and there are still plenty of doctors who refuse to see it as a real illness at all.

As I began to refuse drugs and seeing doctors altogether, up to 18 I was symptomatic every day, but I hid everything to the outside world, it felt like not one person understood, I couldn’t get help to study without a solid diagnosis, I dropped college and could not even manage a few hours charity works. Hitting rock bottom, I was extremely low in weight, still not sleeping, and ignoring my body, because it just felt like the enemy, and over several years I had enough of doctors, tests, and people telling me all I needed was a psychologist.

A few thoughts on FND Blog series

To finish this section of my journey, before everything is about to change for me at age 18.  There was a young woman with a troubled life, in denial of my mental health. How I perceived my illness only contributed to more hate and pain towards myself. Although back then there were plenty of doctors who should be held accountable for misdiagnosis and the most painful words that included ‘there is nothing wrong with you’.

The next three years went further into a downward spiral, that left me dependant and wheelchair-bound, in part 2 I will account for these further experiences. But there is light at the end of the tunnel as this blog will show.

I welcome discussion on this post, please leave a comment if you are a sufferer of FND , experienced similar issues with diagnosis, or even have a question for FND sufferers?

My message is to welcome functional patients into the community and dispel some of the myths surrounding it.

4 Comments

  • Phoebe

    I was diagnosed with FND in August this year after developing uncontrollable tremours in both my arms. I have also developed sensory symptoms with pins and needles/numbness in my arms and legs and visual disturbances. I am waiting for specialist neuro physiotherapy, although the waiting lists are notoriously long!

    I am glad you are raising awareness of this debilitating condtion as I for one am amazed how the level of awareness varies not just with the general public but also with professionals as well.

    Stay strong!

    • Sarah

      Hi phoebe, I am sorry to hear of your struggles with FND but thank you for sharing your experiences with the condition, the condition varies so much in each person and it really helps when we share our stories, wishing you all the best for your treatment, and thank you for being so kind, stay safe xx

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