5 Things I Wish I’d Been Told When Diagnosed With Post-Viral Fatigue

Quick disclaimer: this post is not intended to assume that everyone has the luxury of prioritising self-care over work and other responsibilities. I know being able to practice self-care is a privilege not everyone has - please take from this what is useful and applicable to you and disregard the rest.  

For anyone who doesn’t know, my now nearly 9-year journey with chronic illness began in August 2011, when I caught a cold. That cold then turned into several simultaneous infections - throat, sinuses, and ears - that took three courses of antibiotics to clear up. After the infections were gone, I still felt exhausted, and I was diagnosed with Post-Viral Fatigue.

I’ll never know for sure at what point my PVF turned into M.E., or if it was perhaps M.E. the entire time, and I'll never know if I could have prevented it from turning into M.E. by taking better care of myself. But what I feel certain of from personal experience and the research that has come out since then is that my health was worsened by the way I responded to my fatigue. Here are the things I wish I’d been told when I was diagnosed with post-viral fatigue, and I hope someone may find them helpful. 

1. Pace yourself

One of my biggest regrets in life is pushing myself too much and ignoring the warnings my body was giving me that I needed to rest. I pushed myself when I first fell ill, and I pushed myself when I thought I was finally in the clear and well on my way to recovery. It eventually always resulted in my body crashing to a halt. Even if you're starting to feel better, "quit while you're ahead" (as my mother always says) and learn to rest before you're at the point where you're left with no other choice.

2. Honour your symptoms

You may find some of the things that worsen your fatigue to be illogical, but that doesn’t matter. Whether or not you understand why something is tiring you, it’s still important you respond appropriately and give your body the rest it needs. In time I've found it easier to work out why certain things tire me out, but the important thing is to pay attention to the symptom itself, even if you can't work out the "why".

3. Listen to your body

At the beginning of my illness, I made the mistake of repeatedly doing what made my symptoms worse, because I was told it might make me feel better. I’m not suggesting you disregard medical advice entirely, but if something you’re doing is making you feel worse, even if it’s what you’ve been told to do, don’t ignore that and just press on regardless. I mistakenly thought the doctors knew something I didn't about why I was only getting worse, but in reality there’s not enough known yet about post-viral fatigue to be able to definitively say what will or won’t help. A lot of the time it's up to you to discern what works for you and what doesn’t.

4. Don’t expect people to understand immediately

A struggle I didn’t anticipate when I first fell ill was the fact that a lot of people would brush off my experience, not take seriously how ill I was, or expect me to be able to do everything I'd be able to do normally. Now, that's not to say it won't get easier or that people won't learn - but initially, many of your interactions with people might feel like PSAs about what ‘fatigue’ actually means in the medical sense and how it differs from regular tiredness. My best advice is to familiarise yourself with the basics, come up with a script in your head, and write a mental FAQ section. 

5. Don’t define yourself by your (lack of) productivity 

Our cultural tendency to define individual worth by productivity is worthy of a whole separate blog post - one that I may indeed write someday - but for now, what I will say is that I really do wish I’d realised sooner the importance of shifting your mindset away from valuing yourself based on how much you can or can’t do. There’s a lot of unlearning to be done there, but if you’re going to be ill for more than a few days then the best shot you have at enjoying life is letting go of that pressure to be the most successful and productive person you can be. It will only hold you back in your recovery, and there's so much joy to be found in the small and frivolous things. 

If you're struggling with post-viral fatigue, I would like to sincerely wish you all the best in your recovery. Please take it as easy as you can, and give yourself a hug from me.