5 Things I’ve Learned From Living With Chronic Illness

Feeling feelings. Being your own best advocate. Paula reflects on living with chronic illness and considering how to relate to symptoms, self-care and your body over time.

I was 12 years-old when I was diagnosed with my first chronic illness. I say first, because – as so often happens with autoimmune disorders and long-term illnesses – they come in the form of multiple diagnoses. My alphabet soup of treatable, but incurable, diseases stands at four; Juvenile Idiopathic Arthritis (JIA), Coeliac Disease, Chronic Fatigue Syndrome (CFS), and Bipolar II Disorder.

I rarely look sick, which can be a good thing but also incredibly frustrating. Managing my health involves medication, which comes with plenty of side effects, self-care and, in the case of Coeliac Disease, completely avoiding gluten which is something I don’t recommend unless you absolutely have to.

Here is what I’ve learned in the 20+ years my body has been attacking itself – because that is the easiest explanation I can give of what living with multiple chronic illnesses is like.

You will feel all of the feelings

It’s OK to feel scared and confused. It’s OK to grieve for the person you were before you got sick. It’s OK to grieve for the person you thought you would become. It’s OK  to not know how to feel. There is no one size fits all solution when it comes to accepting the impact your chronic illness has on your life.

Whether you’re happy because you’ve had a good day or frustrated that things didn’t quite go as you’d planned, be sure to process how you are feeling either by speaking to family or friends, writing about it in a journal or discussing it with your counsellor or another mental health professional. Don’t bottle things up; it won’t do you any good. Remember to be patient with yourself; you are doing the best you can.

You will need to advocate for yourself

There have been times when I have refused to leave my doctor’s office or the hospital without being referred on to a specialist. Every time I’ve received such a referral it has been clear that the symptoms that led me there were the result of something new. Each time my primary doctor disagreed with me, only for them to be proved wrong.

It is exhausting to have to fight against the very system that is expected to treat you. Remember that you know what is “normal” for you and what isn’t. You know when things are not improving. You are your own best advocate.

You will learn to reconnect with your body

My body hates itself. This sounds harsh but for a long time it is how I viewed chronic illness and autoimmune disorders in particular. In seeing danger where there isn’t any, my body has caused me a whole host of pain. It doesn’t function like other bodies, which takes time and work to accept and adjust to.

Acknowledging that I am capable of movement has been the single biggest positive thing I have done to change my relationship with my body. What that movement looks like depends on a variety of factors including my pain level on any given day, but even some gentle stretching helps me feel in control. I can do the things I want, but it might involve some slight changes to how others do those things.

The internet can be your friend and your enemy

For many, online communities and support groups are a vital part of managing their illnesses. Feeling heard, feeling understood, feeling like you have a support network can be incredibly powerful. I understand why people join them. I did too, until I realised that spending my time in groups where so much of the focus is on being sick is not good for my mental health.

That’s not to say the internet can’t be useful. It has helped me figure out whether that new thing I’m experiencing is a side-effect to medication or a symptom in its own right (which is something that happens more frequently than I was prepared for).

Everyone’s experience is different and there is nothing wrong with tuning out the things that do not work for you.

The language you use to describe your experiences may change

I was years into living with JIA and mental health illness before I learned about the Spoon Theory used to explain chronic illness. It never resonated with me. I found myself using it anyway, because it was something other people understood. I used it as a framework for navigating my relationships because I felt I needed to, not because being a spoonie was something I related to.

Ceasing to describe myself that way was incredibly freeing. Yes, I live with chronic fatigue and pain to varying degrees – but spoons are not how I choose to explain this.

I am more than my illnesses, but there is no denying that they affect my life on a daily basis and shape my interactions with people and the world around me.