Living with an invisible illness – my personal experience.

Living with an invisible illness – my personal experience.

I don’t know how this is going to turn out, but here goes i guess.

Living with two chronic illnesses is something that has completely taken over my life and ripped most of my childhood right out of the palm of my hands. It’s never been something that i want to deal with, but it’s something that i’m going to have to live with for the rest of my life and luckily i’m quite a positive person so i can accept that.

When i was around 7 years old i was experiencing unbearable pain in the back of my knees and ankles which would cause me to break down in tears constantly. One day during a school sports day my legs gave way causing me to collapse on the floor in pain.

Arthritis is something that runs in my family so my parents just assumed that it had been passed down to me. They took me to the doctors which then lead to years of hospital visits, tests and scans and i was eventually diagnosed with what they thought was Juvenile Rheumatoid Arthritis. At one stage my legs were so weak and painful that i was basically bed bound.

Fast forward a few years to when i was around 15, i was in my last year of high school in the middle of my exams. After years of just coping with the pain i was in, i started to experience even more unbearable pain in my whole body and huge belts of exhaustion and tiredness.

I would feel so drained and tired even though all i would do is sleep and doing my school work become hard as holding a pen was too painful for me.

I’d just moved to a new high school when two weeks in, i had to take a month off due to my health. I nearly got myself kicked out of school as i didn’t attend much.

I struggled to stay awake and would fall asleep all the time, no matter where and when. This caused for a load more hospital visits and tests (YAY!) and eventually i was diagnosed with ME (Myalgic Encephalomyelitis) also called CFS (Chronic Fatigue Syndrome). What they thought was Rheumatoid Arthritis actually turned out to be Joint Hyper-mobility Syndrome.

I would say that Chronic Fatigue Syndrome definitely effects me the most at this moment in time, especially now i’ve got a full time job and somehow manage to work 35+ hours a week (It’s not easy).

Some of the main symptoms that effect me are:

• Flu-like symptoms

• Aches and pains

• Back/neck pain

• Abdominal pain

• Sleep Problems (not getting full rested sleep)

• Chest pain

• Hyper-sensitivity to light and sound

• Loss of concentration

• Reduced attention span

• Word-finding difficulties

• Temperature control/sensitivity

It seems like a lot right?

This is what i deal with pretty much everyday. My Symptoms worsen depending on my mood and at different times of my menstrual cycle too which is not great (as you can imagine).

As bad as the tiredness,aches and pains and all of the other symptoms may sound. The worst thing about having to live with Chronic illnesses for me personally, is that i have to be dependant on people to help me as some days i can’t do even the simplest things.

It’s normal for me to be in pain or feel like the weight of the world is on my shoulders, i’ve just learned to live with it.

No day is the same. Some days i’m okay and so happy, some days i feel like i want to curl up in a ball and cry and some days i just want to scream at the top of my fucking lungs.

It’s frustrating and asking for help isn’t easy, especially when my illnesses are mostly invisible, so people tend to turn a blind eye. Even though on the inside i’m struggling more than you would think. After all these years i’ve got pretty good at hiding my struggle but that doesn’t mean that i’m not struggling.

The thing is, the education and knowledge around chronic/invisible illnesses is very poor. Yet they’re so common and just as bad as any physical illness. Just because you can’t see it, it doesn’t mean that it’s not there.

The main thing i wanted to get out of this post is to raise awareness and to show my friends and family that i need their support even though i find it hard to ask for.

A lot of the time i’m sick of feeling so alone and feeling like i just want to scream out loud because i feel so trapped.

But every single little struggle and every bad day has made me who i am today and i wouldn’t change that for the world.