‘It struck at the heart of who I thought I was’: A meta‐synthesis of the qualitative literature examining the experiences of people with multiple sclerosis

. 2020 Jun 24;23(5):1007–1027. doi: 10.1111/hex.13093

Changing identity	Quest for knowledge	Uncertainty, quest for knowledge	Fatigue
I struggled with the identity issue for years. It struck at the heart of who I thought I was	There is not a lack of information out there – it is the opposite But it is not personalized and varies in quality and currency The onus is on you to take control and self‐educate	I still feel I have both too much and too little information	In 2011 I had transverse myelitis I spent most nights in intense, painful spasms I felt my level of fatigue increase and I am still fatigued

Changing identity

Quest for knowledge

Uncertainty, quest for knowledge

Fatigue

I struggled with the identity issue for years.

It struck at the heart of who

I thought

I was

There is not a lack of information out there – it is the opposite

But it is not personalized and varies in quality and currency

The onus is on you to take control and self‐educate

I still feel

I have both too much and too little

information

In 2011

I had transverse myelitis

I spent most nights in intense, painful spasms

I felt my level of fatigue increase

and

I am still fatigued