May is Ehlers Danlos Syndrome Awareness Month which means, now more than ever, we need to bring awareness to this illness and the lives of those who fight it.
I'm Abby, a 22 year old college student, athlete and the Social Media Chick over at Slick Chicks. I have EDS and a myriad of other illnesses and wanted to share with you what it's like to live life with an Illness that doesn’t go away.
Everyone knows that when people talk about “the fight,” it’s usually in reference to some sort of long or short-term battle. That battle could be any number of things – the flu, cancer, a breakup, a surgery, a tumor. You get the idea. This “fight” is something an individual goes through, knowing that they will (hopefully) come out the other end of. They will beat it, win the fight, and move on.
But what happens when the fight doesn’t stop?
It’s so hard to put into words what a chronic illness is like, which makes it even harder to explain to people who have never heard of such things. I tend to be rather jovial when explaining what my chronic illnesses are and what they do to me. My desire to make sure people aren’t uncomfortable ends up masking how serious these illnesses are, and therefore give those people an inaccurate idea of what I’m going through.
I have a degenerative collagen and connective tissue disorder. I've been displaying big symptoms since I was about 11 but didn’t receive a diagnosis until I was 19.
Ehlers-Danlos syndrome is a group of disorders that affect connective tissues supporting the skin, bones, blood vessels, and many other organs and tissues. Defects in connective tissues cause the signs and symptoms of these conditions, which range from mildly loose joints to life-threatening complications. Common symptoms include joint hypermobility, affecting both large (elbows, knees) and small (fingers, toes) joints; soft, smooth skin that may be slightly elastic (stretchy) and bruises easily; and chronic musculoskeletal (muscles and bones) pain. Although hypermobile EDS is thought to be a genetic condition, the exact underlying cause is unknown in most cases. A small percentage of people with this condition have a change (mutation) in the TNBX gene. Most cases of hypermobile EDS are inherited in an autosomal dominant manner. Treatment and management are focused on preventing serious complications and relieving associated signs and symptoms. It has no cure. It has no known effective treatment. It will get worse. It puts me in an extreme amount of pain every day, which I have learned to cover up easily. On a “good” day, my pain is about a seven out of 10. On a bad day it feels like an 11 out of 10. This disease, known as Ehlers-Danlos syndrome (EDS), causes my joints to dislocate a lot. This in turn makes my body (specifically my legs) very unstable and painful to exist in.
I also have a condition called postural orthostatic tachycardia syndrome (POTS) that can be well-managed for some patients, but not me. Because of my EDS it will not go away, but it can sometimes be managed. It makes me dizzy I faint, I feel out of breath. My heart doesn’t pump blood correctly when I’m standing, so it just kind of drops it all to my feet, which also causes pain.
There are other comorbidities that come with these, but I won’t go into a ton of detail about them, or we would be here all day.
These are chronic illnesses.
We focus so much on the type of “fight” that has an end, a way out, something to look forward to and hope for.
But in doing so we forget the fights that won’t end. It’s been a year since my first diagnoses and 10 months since my second and third, and I’m still fighting. I will have to fight every day until the day I die, and only then will my fight be over because I believe I will finally be in a perfect body that is able to do all the things I haven’t been able to do in years. When that day comes, I believe I will be dancing with the one who made me, illnesses and all.
I’m not asking for attention, but I am asking you to not forget us. Please do not forget the ones whose fights will never be over. Please remember that some people will fight, pray, work and go through surgeries and doctors – but never win.
Looking on the positive side of things has kind of become something I’m rather good at, but I’ve found that it often minimizes the severity of the subject.
As much as I want to end this with a sweet “we got this” message – I can’t.
I have to remind everyone that these fights are brutal, they destroy us, they change us, they make us better and they also make us worse. They won’t end until we do and that is so utterly terrifying. It wrecks us every morning and reminds us of all the “used to’s” and “what if’s.” Some days we can wake up with vigor and energy to fight, only to taste bitter defeat when we feel like it’s useless. Chronic illness is a beast we have to fight daily – there is no stopping it, no getting out of it, no other side.
So, what happens when the fight doesn’t stop?
You keep on fighting even though your body is fighting itself.
You keep fighting when you know you’re on the losing team.
You keep fighting even though nothing may come of it.
Because when the fight doesn’t stop, neither do we.