"No one believes me..." Why a diagnosis is important
If you’ve traveled to this post you’ll probably have some sort of interest in chronic/invisible illnesses. It’s been a rollercoaster for me from experiencing symptoms, having people, believe me, to actually getting a diagnosis. So why is it important?
When I first began experiencing symptoms of fatigue, I had my blood taken and the results were to take medication, to have my iron and vitamin d levels increase.
I then continued experiencing low moods and was referred to CBT and when the first National Lockdown began I was discharged because apparently, I would be fine as I had a new contract.
I did not have a routine during the lockdown. Some days I would be awake for 22hours and then experience drop attacks for several days. I experienced NEAD, brain fog, experienced fatigue, involuntary movements as well as anxiety, depression, and then I just simply felt my heart go numb.
I have had back pain for over 18-months and when my MRI scan was ‘clear’, I was told to go home and be more positive with a website link.
This obviously has not worked for me, or anyone else I know who has FND or Fibromyalgia. I’ve lived off savings and haven’t been taken seriously by most medical specialists. Once I fought for my diagnosis and also a diagnosis closest to my FND symptoms I have been able to have more referrals.
Once you gain a diagnosis, it’s easier for most people and I say this lightly as I know there are still many people who are awaiting treatment, there is a better chance of getting referrals/treatments if there is a diagnosis.
However, I know from personal experience and hearing from others that having the FND diagnosis has almost made people think any visit they have to A&E is not serious.
I guess what I'm trying to say is, having a clear diagnosis rather than “it’s all in your head”, “it’s psychological”, “it’s not that bad.”
As there is limited information worldwide about FND and most chronic conditions, people can only go with the lack of information they have. I am learning to accept that there are people who can only do their best.
Please note if you are unhappy with your diagnosis, you are entitled to a second opinion, change your medical practice, and can complain via PALs.
Written by: Shehla Ali