Living with an invisible illness can be an isolating experience. Chronic conditions that can often leave you with symptoms such as pain, anxiety and depression can make everyday tasks difficult or near impossible. It is also hard for others to truly understand when few or no physical manifestations exist.
Today we talk to Mel, who is kindly sharing her story of living with an invisible illness. We discuss the physical limitations and how it has affected her mental health. Furthermore, we explore how she has fought back and managed the illness.
We begin with a scenario.
If Mel was standing next to you whilst you were sitting down on the tube it is very unlikely you would give up your seat, but what you wouldn't know is that she has to constantly move her feet in order to stabilise her heart rate and avoid fainting.
What you wouldn't know, is that Mel suffers from an illness known as Ehlers Danlos. Ehlers Danlos syndromes (EDS) are a group of rare inherited syndromes that affect connective tissue.
"I wish I had your flexibility"
In her sport, Mel is often praised for her flexibility, but unbeknown to those doing the praising, the illness can affect all different connective tissue, including in the joints, skin, internal organs and bones.
EDS can affect people in different ways, for some, the condition is mild, although for others, symptoms can be disabling. Furthermore, some of the most severe cases can be deadly.
Firstly, Mel wants to stress that this is a very personal story.
"It can present quite differently in people, so my experience can be very different to others. I am fortunate that I can still be active allowing me to manage it. However, others are not as fortunate."
In the beginning, Mel had no idea why she would get injured a lot. She was often the injured one in school, over time gaining a reputation for regular wrist sprains. Although it wasn't until much later that she would experience clawing in her little finger, followed by clawing in her ring fingers.
It was this, that first drove her to reach out to a medical professional for some support.
Two and a half years of testing for nerve damage showed no results and further time undergoing hand surgery failed to correct the problem. It was at that point she was sent to a hyper-mobility specialist who diagnosed her hyper-mobility.
However, even at that point, she was prescribed lifestyle changes in order to manage the condition and it wasn't until she spoke out to close friends that she felt something else could still be wrong.
She would often suffer from one of 3 types of pain. The first one she describes as growing pains, the aching or throbbing you often feel as a youngster. The second she says is like nerve pain. This can be the worst, often so bad it can make her feel sick. The final one is random, stabbing pains that can last anything from a few seconds to a few minutes.
To be fair to the Doctors, there is no test currently for EDS. It is diagnosed through a differential diagnosis ruling out many other illnesses first.
Now the problem with chronic pain for people like Mel is that it becomes your new normal. And without speaking out, you can fail to recognise that something is wrong.
"It was my friends that made me understand that it was just not normal to have that amount of pain."
Because the illness affects all connective tissue, it is difficult for Mel to understand what is the condition and what isn't. Mel struggles with dizziness caused by her blood pressure failing to stabalise when she is standing still for too long.
"I recently had an experience of nearly fainting on the tube, but I am reluctant to ask someone to give up a seat as on the outside I look fit and healthy."
The reality of the situation is that the condition can get worse as Mel gets older, and it can be escalated by stress.
However, the main challenges for Mel now are the unpredictability of the condition as well as the effect it can have on her mental health.
Some days Mel drives to the gym and can lose all strength and feeling in her hands. Furthermore, she doesn't always know when to push through and when to back off. Being an avid Crossfitter she is always keen to push through where possible but this can leave her knocked out for days meaning she needs to manage her recovery including taking whole weeks off from time to time.
Mel also experiences anxiety brought on by her relationship with her illness.
During her youth, Mel took up the family sport of rowing. Choosing to row sculling as her condition wouldn't allow for sweeping. It is during this time that she showed promise, even being selected to train with the High-Performance squad. However, being young Mel admits she was not managing the condition as well as she could
"My coach said I was too unreliable to be put in a crew"
When she thinks back, she attributes this statement to her fear and anxiety about being part of a team. She is worried that her condition will cause her to let people down. Although she feels in a much better place in terms of managing the condition, she still puts a lot of pressure on herself.
"If I decide the stop, The first thing I am thinking is am I being weak"
Her final point to make is that the illness can affect people very differently. She is lucky enough that she has been able to continue strength training which has helped her build strength and stability around her joints. However, not everyone with the illness is lucky. Some suffer from extreme chronic pain making day-to-day life a real challenge. Therefore, she is keen to raise awareness of this and other invisible illnesses to ensure people understand that despite people appearing one way on the surface, they might be feeling completely different underneath.
If you need more support or information about the illness discussed in this article. Try resources like the Ehlers-Danos Society that have an abundance of information available on its site.
Furthermore, if you need to speak to someone about any wider topics in any of our articles, websites like Talkspace have a network of support available.