By Ella Lloyd
Illustration by Amelia Field
*TW ÔÇô Discussions of autoimmune diseases and undiagnosable illnesses*
When I was 11, I caught glandular fever. I was off school for nearly 3 weeks and lost a lot of weight. I’ve never quite been right since. From around 15, I developed a host of unexplained symptoms- joint pain, excessive fatigue, chest pains, consistent anaemia, and weird blotchy skin rashes. My Nan was diagnosed with rheumatoid arthritis quite young, so naturally, my mum recognized what was happening to me quickly and marched me straight to my GP. They tested me for more things than I care to remember: arthritis, lupus, diabetes, coeliac disease, a thyroid condition ÔÇö the list goes on. My results came back clear. This, I was meant to see as good news ÔÇö I don’t have an incurable disease, yay! But in reality, it only caused more confusion ÔÇö if not this, what was wrong with me?
Autoimmune diseases are difficult to diagnose because there isn’t one test you can take to prove or disprove a diagnosis- they can only assist it. There’s a lot of crossover in and a large range of symptoms -meaning two people with the same condition can present in completely different ways. Some doctors also believe autoimmune diseases are often misdiagnosed as other conditions which are not categorized as autoimmune, but share many of the symptoms, when blood markers aren’t present. An underfunded NHS and a pandemic haven’t helped speed this up.
Part of the problem is describing your illness in a way a doctor will understand. How do you explain that everyone your age is going on 3-day benders doing lots of drugs and then getting up and going to college on Monday feeling fine; and if you go clubbing on Friday you’ll feel like a ton of bricks hit you until Thursday. They’re going to tell you you’ve got a hangover, you shouldn’t do drugs and should only consume alcohol moderately. Explaining that your pain and your fatigue isn’t just hormonal is another battle altogether- ÔÇÿCould this be related to your cycle?’. That one really hit a nerve. I already felt like I wasn’t being listened to, on my 3rd or 4th GP appointment, and here they were telling me it was just a girl problem I’d been over exaggerating. One doctor suggested it was a physical manifestation of depression ÔÇö ÔÇÿDo you ever feel low?’. I’m 18 years old, my friends have all bought tickets to Reading Festival this week and I can’t even imagine being well enough to have one night out. Of course, I feel low.
Then comes the Imposter Syndrome ÔÇö when a third doctor tells you they don’t know what else to try, you start to second guess yourself. Am I making all of this up? If I really just tried harder would I be able to do what everyone else did? Am I wasting everyone’s time?
Touch wood, the last two years have been better, health wise. But I’m still in the grey as to what I actually have. I’ve been able to manage my illness and have a mostly normal life (coronavirus notwithstanding), but it still has an impact. My illness is one of the reasons I decided to stay home for uni. While I was applying, I was only looking at universities a couple of hours from Cardiff, or that had some family nearby. When so recently I was so ill I couldn’t even make SuperNoodles, I had to be somewhere where I could get home quickly.
When you’re undiagnosed, there’s not much your doctor can do for you, you have to learn to deal with your illness yourself. I’ve tried a million and one things ÔÇö pills, supplements, herbal remedies, even CBD oil, but ultimately there’s not much you can do without medication. I take multivitamins and iron; tiger balm is my saving grace; and I try to eat as well as I can (CEO of eating my greens). But, mostly I had to learn to listen to my body. When I wake up I need to ask myself how much I can do today. Sometimes that means choosing between going to lectures or going out. Sometimes that means not going out tonight because there’s a bigger event tomorrow and I know I won’t make it to both. Sometimes it’s going to the pub but leaving before you get to the club.
I’ve had to be kinder to myself. It does me no good to worry about things. To worry about if I’ll be able to achieve everything I want. To worry if I’ll lose friends for being boring. To worry if I’m actually just looking for attention. I’ve had to let myself be upset about it too. I’ve learned to laugh about it ÔÇö if I ever sleep in past 12, my little brother will poke his head through the door and ask ÔÇÿLupus or Hangover?’ which always makes me giggle.
Interested in reading more from this series? How about our most recent articles in Invisible Illnesses:
ÔÇô Invisible Illnesses VI: My Experience with Body-Focused Repetitive Behaviour
ÔÇô Invisible Illnesses V: Living With a Depressed Parent
ÔÇô Invisible Illnesses IV: Coming to Terms with My Complex PTSD and What Comes with It
