The strangest thing happened to me a few weeks ago – I had two days in a row with next to no symptoms, or to be more specific two days of less bothersome symptoms. Two whole days! One after another! I have to confess the days after were pretty horrific, but let’s not focus on those today, instead I want to talk about those good/better days.
I get symptom-free days once in a blue moon, and here I had two. I actually couldn’t believe it when it happened, in fact, I thought I had filled my symptom diary out wrong, and yet the overriding emotion I felt was guilt.
Not happiness or relief, but guilt. Guilt that my body had allowed me this temporary rest break because chronically ill people are supposed to be ill all the time right? And if I am not then well, maybe I am not as ill as I think I am. Maybe I am faking, and maybe all the people who have ever doubted me are right after all.
As destructive as this way of thinking sounds, this is what having good days does to me. It makes me worry about how this comes across to other people and how they may judge me for having this rare treat. I say this because in my experience people who don’t have chronic illnesses expect someone like me to be ill every minute of every day and when you are not, well you can’t be as bad as you make out then.
Sometimes I feel like maybe my illnesses threaten others, or makes them feel embarrassed so maybe they are trying to find something to say to take the edge off. Maybe people just want me to get better, so when they think I am doing ok they interpret it as I am making some miraculous recovery. Whatever the reason, it is unhealthy for me to have taken on those beliefs too.
The reality is my better days would probably equal some people’s worst, so why do I beat myself up? I beat myself up because society makes me beat myself up, because unless I am looking like I have just rolled out of bed, in baggy old clothes, with big dark eyes then I really can’t stake a claim on illness.
It’s funny really because I wouldn’t ever quiz someone who has been ill or under the weather when they are able to do something, I would just accept it, so why do others feel they have to when it comes to chronic illnesses? In the same vane, you don’t see ‘normal’ employees being made to feel guilty for having their annual leave, yet chronic illness is a full-time job, so surely I am entitled to some holiday leave too. I mean they even get days in the week or the weekend off, chronic illness is a year-long affair with no bank holidays, birthdays, Christmas, or summer holiday breaks booked in.
Jokes aside let me get a bit geeky for a moment, when you really think about it, on average I have 2-4 less problematic symptom days a month, and never usually consecutive so this month I was extremely lucky. On average there are 30 days in a month and 365 days in a year. So, if I use my average of less problematic symptom days that equals 3 days in every 30, or 36 days out of 365 which I would classify as ‘better’ days. 36 days a year wow, that is pretty mind-blowing.
The reality is you can’t compare chronically ill lives with those that aren’t, the challenges are different as much as the accomplishments are. By allowing myself to feel guilt over my good days all I am doing is comparing my life to those who are different to mine, and allowing the negative viewpoints to engulf me. Having a good day is something to seize, something to enjoy and something to be proud of. No longer will I be made to feel ashamed because this body is mine and if I have to endure the lows, I am going to make damn sure I embrace the highs too.