What’s it like living with a hidden disability? A Sheffield student gives her account

By Mia Radford

My name is Mia, I’m 21 and I am disabled. But it doesn’t always look like it because my disabilities are hidden. I live with several chronic illnesses, and they all impact my life in different ways.

There are 13 types of Ehlers-Danlos Syndrome (EDS) and I have the hypermobile type, also known as hEDS. This condition was the first one I was diagnosed with and it affects my life the most.

It’s a hereditary condition that usually takes years to be diagnosed. For me, I was born with bilateral hip dysplasia which was untreated. I also was (and still am) very clumsy and I also bruise very easily. I got more ‘growing pains’ than my peers, I was also described as being ‘double jointed’ – these are all early signs that your child might have a type of EDS.

Growing up I noticed more pain, when running sometimes my hip felt like it got stuck and it can now get very painful to walk on. I get many types of pain, mainly aches but also sharper pain in my, elbows, knees, hips, shoulders and wrists.

I also get shooting pain in my limbs as well as nerve pain – I also sprain my joints more easily. This affects my day-to-day life and because I suffer with chronic pain I am in pain 24/7, it’s just the severity and type of pain that differ.

The trouble is that people don’t see this and often when I would need a seat on the bus or the train I would feel too awkward to explain because I don’t look like I need one. I feel like I’d get judged because I’m young.

There is no cure for my condition, it can be progressive and is degenerative and all I can do is keep on learning how to manage it. This is my normal.

As hEDS is a connective tissue disorder it can affect everything in your body and there are a lot of co-morbidities. One of them being  Postural Tachycardia Syndrome (PoTS).

I could barely go for a walk without feeling dizzy or almost fainting

PoTS is one of the conditions that has affected me the most in the last year. Pre- medication I could barely go for a walk without feeling dizzy or almost fainting. Walking up a hill or upstairs would make me feel more breathless than my peers and once I got home from an outing, I would have to lie down for hours in order to feel less lightheaded.

I also had multiple daily bouts of both tachycardia and bradycardia and heart palpitations. Another common symptom of mine was presyncope, feeling like I was going to pass out, after standing or when it got too warm because of heat intolerance.

Drinking four litres of water a day and eating an extra three to ten grams of salt a day, along with medication, is how I manage it and I now can go for walks more often and haven’t noticed nearly as many heart palpitations, though these still occur. I am thankful I am able to manage my PoTS better for the time being.

People with these conditions often try to hide them to appear ‘normal’

Both hEDS and PoTS can cause fatigue and gastrointestinal (GI) issues. I suffer from extreme fatigue which can feel like mild flu-like symptoms during a flare up and can leave me feeling unwell for days.

These conditions are often misunderstood because of how little is known about them, even medical professionals are unaware about them, especially because people who have these conditions often try to hide them to appear ‘normal’ and get on with their day.

It is important to spread awareness and if you are seeking medical help make sure you are persistent and maybe take a check list of symptoms that you have.