3 Hard Truths About Chronic Illness

As a famous Jedi once said: “This is not going to go the way you think.”

At the age of three I was rushed to hospital. I’d been rapidly losing weight and was unable to swallow or digest food. Encephalitis? Meningitis? Test after test came back inconclusive. Something in my body was attacking my nervous system and nobody knew how to stop it.

I spent the next ten years in and out (mostly in) of hospital and my heart stopped twice on the operating table.

They never discovered the cause.

Skip forwards thirty years and I’ve learned a lot about living with an invisible, rare and chronic condition. With around 50% of all Americans having a least one chronic condition, it’s an issue that touches all our lives in one way or another.

During the pandemic I started to write down my experiences in the hope that they might encourage others. Lets’ be clear — I’m not an expert, a wellbeing guru or a Doctor. But what I do know is that many of the narratives around chronic illness are at best unhelpful and at worse dangerous. One thing I came to understand was that we really need to reframe and be sensitive about the language we use to speak about illness.

Could I do better? Probably not, but I wanted to try.

I’m not going to tell you to eat better, meditate, or exercise more. This isn’t a battle and you’re not a survivor. Whether you’ve just been diagnosed, or have lived with chronic illness for years, here’s hoping the advice below will offer a fresh perspective on how you can deal with the situation.

Let’s get into it…

1. You will not get the answers you seek.

What has TV taught us? There’s always a super-doctor waiting in the wings to examine our symptoms and heal us at the very last minute. This rarely happens in real life. One of the hardest truths to accept is that your Doctor (McDreamy or not) isn’t going to make you better.

The truth is, more than likely, you may never get the diagnosis or even treatment you are looking for. And even if you do, there is rarely a ‘Big Fix’ to turn back the clock on what has happened.

It’s no exaggeration to say that navigating through the health care system can be as traumatic and exhausting as your chronic illness. Be organised, forceful with professionals (where appropriate) and keep your outcomes realistic.

2. You’re not a hero, lucky, blessed or special.

It may sound counter-intuitive, but this type of continuous positive reinforcement (by yourself or others) can be damaging to how you cope with your illness, especially as a child.

Let me be clear, your friends and family mean well and will themselves be struggling with their own trauma. They feel useless. They want to support you. However, the last thing you want is to be weighed down with unnecessary expectations (as well as trying to, you know, get better!).

Though you may not be a hero, you are alive and that is amazing!

Be careful to be label someone (or yourself!) a ‘hero,’ ‘lucky’ or ‘survivor’.

3. You have to go backwards to move forwards

Guess what? Chronic illness can also have a massive negative impact on your mental health. Often overlooked, especially as you begin to live with a condition, the emotional and psychological damage long term illness can cause is very real.

Don’t ever be afraid to get support.

Not just for your physical needs, but also your psychological ones. Join online/offline groups, ask your Doctor to refer you to a therapist or if you feel comfortable, discuss how you’re feeling with your friends and family.

Again, steer clear of the ‘Big Fix’.

Give yourself time and try different approaches until you find the one (or more) that suits you.

Be kind to yourself, patient and always remember how far you have come.

There will be days when you’re lying on the floor in pain. Days when things are good. So, if you take one thing away from reading the article let it be this — dig down and be utterly honest about how chronic illness is impacting your life.

Now, if only I’d take my own advice…