“I don’t know....”
Is there any answer to a question that is harder to get your head around than this one?
We are not used to hearing or dealing with this now that we have a device in our pocket that can answer every possible question we could have. My last Google search included ‘Cricket bat sizes’, ’recipes for Alaskan salmon and ‘scandoval’.
Not knowing is an uncomfortable place to wait. Never being able to fully know is even more complicated.
When it comes to health, often we find ourselves right in that grey area. I could find ways to explain this to my patients - ‘wait and see’ ‘we’ll keep an eye on it’ ‘come back in 4 weeks and let’s look again’.
Often symptoms might resolve in that time. This would be reassuring for both parties and I’d know I’d made the right decision. The patient was feeling better. A success. If symptoms worsened or hadn’t improved this led me down another path- referral, new prescriptions, and researching what else this might be. What I could be missing, as a doctor responsible for finding an answer for the patient in front of me, and their suffering.
But with chronic illness that is not the case. One symptom may resolve, and another three may pop up in its place. These may not seem in any way connected, but to the sufferer, they amass to one thing. Fear and not knowing. Long covid has brought this into our consciousness with bells on. Not only is this a chronic condition that affects many body systems - which is not unique - but it is one that everyone is learning about in real-time. That is hard.
There are symptoms that co-exist with many chronic conditions that may be explainable as to the mechanisms of why, but the answers for treatment do not offer such certainty.
Fatigue, pain, stiffness, and reduced exercise tolerance could fit the tick box for everything from Rheumatoid arthritis to inflammatory bowel disease. Prescriptions that might help a 70-year-old retiree with swollen deformed joints may not help the 25-year-old PE teacher who is also considering a pregnancy. Having ways to handle the stresses these symptoms bring is key to a healthier life with an uncertain diagnosis. There is no prescription that will give you that. I’ve learned that the hard way.
Many of us live with the uncertainty of these conditions and these symptoms bring them every single day. For that in itself, we deserve some sort of annual holiday or medal from a sovereign or president. We live in the ‘I don’t know’ space. Sometimes this can feel light and breezy, a degree of acceptance can become the overwhelming feeling and the sense that you can manage whatever the day brings. Other times, not so much. Fear, worse-case scenario thinking and anxiety can overwhelm you. Will it always be like this? Have they missed something else? Is it really this bad or is it just me?
For those days remember this:
Nobody knows anything really. We think we do but actually, we just have ourselves in this exact moment to think of and care for. If this moment for you is a shitty one that is totally fine. Embrace it.
Lots of the stuff we worry about is linked to other people's expectations - in work, in family life and something you’ve read online. Ignore those and trust yourself.
Everything feels worse after a bad night's sleep. Find a way to make that better- preferably one that is good for you. If poor sleep is an ongoing issue for you, seek professional help. (I’m going to come back to this topic…)
One shitty moment/day/week doesn’t mean the next one will be like that. That I definitely do know.