Brain fog and what it really means
Alexandra Fulford
Creative Thinker, Storytelling Coach, Healthcare Social Media Strategist & Trainer, & Autoimmune Patient Advocate
Over the last 24 hours I have been struggling with side effects from my COVID booster. One of the most challenging symptoms has been quite severe brain fog but I have seen this as an opportunity to raise awareness of what brain fog actually means for an autoimmune patient.
Brain fog means your brain stops working properly. It is also called cognitive dysfunction but most patients use the term brain fog. I like the term cognitive dysfunction as I feel it adds more gravitas and aligns more to the severity of the symptom. The reality is though that brain fog resonates more and is easier to say. On a side note I used this an example today whilst training HCP on how to use social media - I reminded them to please use terms their patients use!
So what is brain fog?
Memory
This is probably the best known symptom and the one most people associate with brain fog. Mild brain fog makes you forgetful but severe brain fog is more than just being "forgetful" in the sense that most people think. It is as if someone has literally wiped your brain. There is no remembering things later or if someone jogs your memory. The recollection is just gone. Forever. You could have been in a meeting and the next day have absolutely no memory of the meeting happening.
What people also do not realise is that sometimes that memory loss is permanent. In my case I have huge chunks of my long term memory that are gone. Even looking at photos does not bring up anything. The memories have been wiped.
Speech
This for me was the most distressing symptom when I had severe brain fog - my difficulty in talking. This is where the term cognitive dysfunction feels more accurate - your brain just does not work properly. This means you can struggle to string a sentence together. Words that you use everyday are not available to you and it can be a battle to find the right words to communicate what it is you are trying to say.
I actually had this today on one of my calls and I think my colleagues might have had serious thoughts about my abilities had I not flagged that I was suffering from brain fog.
This symptom is also a big issue for patients when they are trying to communicate with their HCPs. If you need to clearly articulate what you are going through it helps to be able to speak clearly.
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Concentration
Again using the term cognitive dysfunction feels more accurate when considering the impact on concentration. Brain fog however better describes what it is actually like. It is as if you're brain is covered in cotton wool or "in a fog" and it is a struggle to concentrate on anything. There are fleeting moments but it is exhausting.
This is why often you see brain fog and fatigue going hand in hand. I am not sure which causes which - whether the brain stops working because of the fatigue or if the fatigue is worsened by the efforts of trying to get your brain to do everyday things - but both are terrible.
Research
Or lack of research I should say. There has historically been a total lack of research into cognitive dysfunction in autoimmune disease. There are now some small studies that have been done but IMHO not enough. I think this is possibly in part due to scientists and HCPs not fully grasping how bad of a symptom this is and the real impact it has. The fact that it inhibits patients from communicating accurately no doubt does not help.
It could also be that this is because this is a symptom that effects more women than men. In general autoimmune diseases are generally more prevalent in women (in some cases close to 9:1) and there have been arguments that this and inherent bias in medicine against women means that diseases and symptoms that impact women have seen far less research.
Either way I feel that it is high time people were more aware of the true nature and impact of brain fog as a symptom and it started to get the recognition and research funding needed.