Jess on Life with E.D.S.

Life With Ehlers-Danlos Syndrome, by Jess

“Oh, wow! How do you bend your arms like that?”

“You really are double jointed aren’t you?”

“Geez you’ve got skinny, long toes and fingers don’t you?”

“Wow you can do the splits? Look at those bruises, how did you get those?! You’re such a klutz!”

If I had a dollar for every time I’ve heard any one of these comments… 

For the most part I’d just laugh it off, or be proud of my party tricks. I would most likely be just as in the dark as to how I got those bruises, as the person who was asking.

Truth is I am a klutz; I am accident prone. I’m the girl who plays Wii bowling and sprains her ankles -this isn’t a one off either. It’s happened so many times that if my GP saw me limping he’d literally laugh, and say along the lines of “Let me guess, Wii bowling?”

I could just be walking along, wearing a flat pair of shoes when a knee would give out and BOOM! My ankle rolls, and I’ve got another sprain. Or that time I played netball, which led to chest pain so bad that I couldn’t take a deep breath – though it eventually eased enough for me to breathe with tolerable pain.

Fast forward through three months spent with hospital visits, weekly GP visits and numerous tests… It turns out I had a slipped rib, and once it was put back in place I was good as new, though I still get them to this day. Yes they’re painful, but now I just pop them back myself!

These are just a few examples of some of the more memorable injuries, from a very long list. Like everyone, doctors attributed these injuries to being accident prone and in their defense I don’t blame them. The reality is that pain is pretty much a daily occurrence for me, admittedly in varying severity, and sprains are common. Unless it’s severe I generally adopt an ‘it’ll be right’ approach, and continue on with whatever I’m doing.

One injury changed all of this, when I was walking along doing some Christmas shopping. My leg had been painful earlier, but at the time I had brushed it off - muscle pains were not uncommon to me. Suddenly I felt my knee give out! As my knee went one way and my body went another, I fell forward. Luckily my mum was standing in front of me to break the fall, but this time I knew I’d done damage - the pain was immediate, and more severe than any time it had been in the past. 

After sitting for a while I got up by leaning on a trolley, trying to put as little weight as possible on it. I’d driven an hour for this, and I was going to finish my shopping in pain or otherwise! 

Once I got home I knew I needed to get it looked at. I hadn’t been happy with my current physio for a while so I messaged a friend for details on hers. She had seen a physio who she had raved about, so I decided to give them a try. 

Initially on Friday the first physio assessed me, immediately putting me onto crutches. He then booked me into see his boss, who was a knee specialist, first thing the following Monday. 

Best decision ever.

During his assessment he noticed my tendency to be extremely flexible, and was asking me a lot of questions about previous injuries and bruising. I did wonder as to why with all the questions, but thought, ‘At least he’s thorough’. 

Once he finished, he gave me the moment that literally changed my life.

“I think you might have Ehlers Danlos Syndrome (EDS) hyper mobility, has anyone ever mentioned this to you?” He asked.

No doctor had ever mentioned it before and I’d never really heard of it, but he was convinced. I did some research and suddenly it all made sense, the bruising, the sprains - everything! Even the Postural Orthostatic Tachycardia Syndrome (POTS) I’d been diagnosed with in years prior had links to EDS! It was literally my light bulb moment, and I was so excited that finally there might be an explanation for all of this!

As for my knee…

I had an MRI and found I’d torn my patella cartilage. It turns out the pain I felt was my patella partially dislocating (subluxation), tearing the cartilage underneath.

In January 2018 I was officially diagnosed with EDS hyper mobility.

EDS is a lot more than just hyper mobility, and causing subluxations and dislocations. It affects so much more, not to mention there are so many different types/variations of EDS. No two people who have it will have the same presentation, symptoms or associated conditions. It’s totally individual, which is partially why it’s so challenging to diagnose and manage.

Personally for me it’s the pain, brain fog and fatigue that affect me most. Again it varies day by day, so I have days where I am super productive, and feel great. Then there are others when getting up takes so much effort, and certain tasks become impossible. One of the challenging things about this condition is that I don’t know when is going to be a good day, and when it’s going to be a bad one.

Making plans can be a challenge. Also, as with a lot of chronic conditions that are invisible diseases( including EDS and POTS) people can’t see the pain, fatigue or the brain fog - unless I have strapping tape on, or are showing signs of visible bruising.

Have I had to alter my life plans? Yes slightly. 

Have I stopped comparing myself to others, seeing what they can do but I can’t? No, but I’m working on it! I don’t think I will ever completely, but I’m getting better at it. 

Have friends, medical professionals and colleagues doubted me? Absolutely. 

I’ve found a lot of professionals who do believe me, whom I rely on to actively to help me manage my symptoms and conditions. I also have an incredible group of friends who I can turn to, and it truly makes the biggest difference.

If I could give anyone suffering with unexplained pain/symptoms or chronic conditions advice, it would be this: It’s not all in your head! Find professionals that will listen, take you seriously and advocate for you, who have knowledge on your condition.

Talk to your friends and family, having them to fall back on/distract you can be a blessing in disguise. Become informed, but be open to suggestions from those experienced in your condition - if you know what it is. Social media is great, but be aware to not get sucked down the rabbit hole, competing for who actually feels the worse - especially in support groups. It can get toxic, and mentally it does not do you any favors. Use support groups for helpful advice and to support others, remembering that it’s not a competition. 

Lastly, reach out and know you are not alone! I wish all who read this the best, with more good days then bad.