Probably one of the most fundamental shifts I experienced as chronic illness took over was the departure from normalcy. It is a hard thing to come to terms with and probably harder than most people will ever realize. Sadly it happens for many autoimmune sufferers the world over.

Despite thinking otherwise, the majority of people live within a realm of normal that they share with most other human beings. For example most people will eat at regular times, sleep at regular times, work at regular times, holiday in the same seasons and wear mostly mainstream clothing… And so on. Normal is a place where most people like to live and it helps regulate their lives. Normal is where people feel safe and appreciated.

This, however, is rarely achievable once you become chronically ill and most people don’t truly appreciate this. People will often assume that chronically ill people live out there days in similar ways as everyone else however they get to stay home more and rest more. It seems as though it is a simple and easy life from the outside looking in… but it’s not. Not even close.

Let me reminisce a little. Years ago my job required me to work night shifts. Many night shifts in fact. At first I enjoyed the change and the extra money but as time went on the novelty soon wore off. Even something like changing your working hours can put you out of sync with the rest of the world and it quickly became a hard life. I struggled to see people. I struggled to have a social life. I struggled to do normal things like household chores because I was working when almost everyone I knew would be sleeping and I was sleeping when things needed to be done during normal hours.

Ask anyone who has worked night shifts or did jobs which require you to do something outside the regular nine to five and you will quickly see that it becomes hard to fit it with the rest of the world.

Now that I have given you a little context, I can begin to explain that there is nothing normal anymore when you become chronically ill and disabled and it’s a constant battle to behave like and fit in with the rest of the world.

As I write this it is 3 am. I have been awake in pain for most of the night and this has become a normal night for me for many years now. My husband has been up with me although I try to let him sleep a little more than me because he is exhausted, I am exhausted too but sleep is no longer normal for me. His means that we generally start our days at 10 a.m. having had maybe four hours of sleep. We are perpetually tired and I am constantly struggling with tiredness and weakness. That is our new normal. We try to nap during the day but that offers many difficulties and doesn’t work well with the rest of the world.

My days will be decided by pain, incapacity, weakness and various other symptoms which means that doing things that regular people do at the times they do it is almost impossible. The past few months I haven’t been able to eat much solid food and that is not normal compared to 99% of everyone else I know and how I was many years ago. I dearly wish I could be normal in these things too but normal has become a mirage that I can no longer afford to chase.

I haven’t been to a shopping mall or a restaurant in several years now because on days that I feel slightly better I don’t want to spend them shopping or waste the chance to sit in my garden, go for a drive, play with my pets and do something for my husband. These small things are what I now live for and most people would call that boring and not normal. It has been nearly a decade since we went on a holiday and compared to my friends and loved ones that is not normal. I have the same desire to travel and be entertained like normal people but this has become beyond my reach so I have endeavored to find relief and entertainment in other places.

I miss normal and doing normal things a great deal and that is why it becomes particularly painful when someone makes me feel like I am unreliable, not trying or unworthy because I can’t do the normal things others can.

Chronically ill sufferers will go through almost anything to be normal again. We take meds, we push ourselves, we hurt ourselves and we suffer emotionally and physically in order to try to be normal again until the time as we decide that normal is something that we can’t be constantly battling for or compared to.

It’s a hard point to reach.

Struggling to meet peoples expectations and ideas of normal was a yardstick that I was constantly beating myself up with but I had to face a point where I no longer want to suffer to be normal and I need to put much more effort into being happy. Peace and happiness becomes far more important to me now and exists outside of people’s definitions of normal.

Leaving normal was a painfully difficult experience but it has also made me a stronger and more courageous person than I was when I was able to be like everyone else and do all the things that everyone else does. I feel guilty that it has meant that my husband has had to leave normal with me but I can’t tell you how much it has meant knowing that he chose to leave normal for love and says he would do it again without question.

Compared to other couples out there that have never been truly tested to this extent or compared to couples which have broken up over less difficult situations I guess this sort of love isn’t normal but I am so grateful for it and proud of it.

Finding a love that is this strong is rare and it’s worth being not normal.

Gentle hugs,

Trish.