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“there always seems to be something wrong with you.."

Throughout my years in living with chronic illness, a phrase I’ve encountered much more often than I’d like is, “there always seems to be something wrong with you”. I’ve never fully understood the relevance of this phrase. Is it a question? A statement? Am I expected to respond? How am I expected to respond?

Despite this phrase generally stirring up feelings of frustration, irritation and disappointment, I’ve tried to react to it in a variety of different ways over the years. With gentle agreement, that yes, I have multiple chronic illnesses, so unfortunately there is always something wrong with me. But by the time I’ve gotten to the end of that sentence the other person has generally walked off for fallen into a deep coma.  I’ve tried responding with mild anger; that yes, I’m always ill and it doesn’t help being made to feel I’m being doubted by other people. I’ve even tried sadness; advising that it is distressing to feel questioned or misunderstood when really, it’s difficult enough dealing with all of this on my own without judgement.

Despite this mega-mix of responses, none of them seem to have stuck, and the phrase is still one I hear semi-regularly whenever my condition(s) are mentioned. (Even if it’s not me who is bringing them up in the first place).

To give a bit of context as to why this passing comment sticks with me in such an unhealthy way, let me explain why it can be like fighting a losing battle discussing multiple illnesses with those outside my intimate circle. Not a euphemism.

At 35 I’m still ‘young’ – ish. In the logical world I shouldn’t have crippling conditions that affect my internal organs, my bones, my joints, my skin. All of that shutting down of the body comes later, when we are creeping up on death like the Grim Reaper in Crocs. It’s certainly what I thought anyway. I was diagnosed with Arthritis at 25 and suddenly found I struggled to walk, felt immense pain from the slightest micro movement and looked towards a life with an incurable condition that ‘old people’ usually had. For a long-time I was advised (despite having had a medical diagnosis) that it was just a sprain, or just growing pains or just my knees trying to live out their dream of becoming fat red balloons. Preconceived notions on what illness should look like and when it should strike, are usually always wrong; although trying to make that notion understood is easier said than done.

Talking about illness(es), isn’t an attention seeking process. It’s a part of my life, and when I share with people, I generally try to share the good and bad. When I am discussing a condition for the first time it is never to extract a certain reaction, or even worse; pity, but simply to advise on something that affects my day to day life. Just as you might tell me you love Tom Hanks films, I might tell you most days I feel so tired I could give Sleeping Beauty a run for her money. It doesn’t mean I’m looking for sympathy, it’s just a fact of my life and ideally an in to help you understand why I might accidentally enter the World Yawning Championships in the middle of a meeting.

It’s important to remember that I don’t want or choose to be unwell 365 days a year. Ideally, I’d be living it up eating vats of mashed potato while guzzling milk at a rate of 6 pints per minute, while dancing to Abba and doing the perfect splits. But sadly, for me that particular childhood dream is over. When one illness flares, it tends to domino neatly into the others, setting off symptoms all over the body. Medicating multiple illnesses is also a gargantuan challenge. What works wonders for one can cause an exacerbation of symptoms in another. Seeing multiple specialists for different conditions means we also need to ensure we are remembering the details of every other medication so as not to be prescribed something which might set off an adverse reaction elsewhere.

Naturally with several different illnesses, it can be difficult to pinpoint exactly where issues are coming from. We become so anesthetized to living daily with pain and discomfort that eventually all individual issues meld into one useless carcass. Having multiple chronic illnesses is a full-time job in itself (with no annual leave and absolutely no benefits scheme).

The unpredictability of chronic illness is something often spoken about, and a definite life-changer. Not knowing how we might feel from literally one hour to the next is understandably stunting in many areas of our life. We might have to cancel plans at a minute’s notice, leave work early, or take ourselves to hospital in the afternoon after feeling tip-top in the morning. This can lead to isolation and intense feelings of loss; in our personal life, professional life, even in the decimation of what we had expected or hoped from our future lives.

To cut a life-long story short, having multiple chronic illnesses is like having an incredibly unpleasant full-time job we never have a break from. Waiting for that break is intensely frustrating, as we often constantly have to remind ourselves it will never come. When one illness is under control another rears its ugly head and reminds us that yes, there is always something wrong with us. We don’t need a reminder from outside sources; our bodies kindly do that work all by themselves…

Kathleen NichollsComment