What You Can’t See About My Life With Ehlers-Danlos Syndrome

I don’t remember everything about my diagnosis of Ehlers-Danlos syndrome (EDS) as I was young. I remember multiple dislocations, I remember how happy I was to go to the doctors in my brand new navy blue flowery clogs – only to be told I couldn’t wear backless shoes anymore. I remember being told that it was dangerous to ride a bicycle… but that is about it.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

From diagnosis in primary school until I was at university, my condition didn’t really affect me. I had dislocations every now and again, I fell over a lot, I had issues remembering and staying awake. But as this is a condition I grew up with, these seemed more like personality traits than symptoms from an underlying condition.

In my early 20s the pain from EDS got worse and my life changed forever.

When thinking about things you cannot see when someone is living with EDS I have quite a few…

1. How I get ready in the morning.

Today for example, my fingers dislocated in the morning when I was trying to do my hair to get ready. My shoulder popped out while I was watching television and eating my Weetabix with my partner before work. I let out a yelp and he looked around to check. I was OK, but nothing was said… to us it’s normal for me to pop out all the time!

2. Me at work or outside the house.

Outside the house it is different, because whereas my partner can see in my eyes I haven’t slept or that something has probably just gone out of joint, people who do not know me well cannot see the subtle signs. I carry on with my work. I normally drink water to stop myself crying when I am having a particularly bad day. At one point today I had to walk up and down the stairs for 10 minutes. It hurt, but I knew that if I didn’t, my legs would keep trying to pop out and sometimes the only way to stop it is by keeping moving. Other days you aren’t able to move. Basically, you never know how to fix yourself. It’s great.

3. My driving.

I remember one particularly horrendous occasion when EDS just started to take over my life and I hadn’t yet discovered my limits or spoons, my hip subluxed while I was in my car. I had to pull over very slowly. The pain was excruciating, one car beeped me, more cars pulled faces. This is one of the many reasons my partner drives if ever it is a long journey. It was heartbreaking. People cannot see that your joints are letting you down, and this is a horrible invisible symptom of our illness.

4. My day trips.

Lots of people look forward to trips out with friends or doing something new. I stress, worry and have to think of all the possible outcomes when I am planning a day trip. What happens if I get tired and I need to rest, where can I go? What happens if someone else drives and they aren’t happy to take me home if I am in pain? What happens if I am expected to drive and there is traffic? What if the journey is too long and I am in pain before we even get there? What people cannot see is all this going through my head. They see me thinking and they may think I am disinterested or ungrateful if they ask me on an adventure or whether I would like to do something. It is something that people without EDS cannot see when a trip is being planned.

5. My nights out.

My last night out was a few weeks ago in Manchester. My lovely friend and I went up for a weekend away and it was so exciting and tiring. The photos showed us smiling and laughing. What you cannot see from my Facebook photos are the Uber and taxi bills that cost more than the night out. I couldn’t walk from place to place so we had to pay to be transported even the shortest distances. You see us sitting down for photos but didn’t know that I was dancing from a chair for the last half hour because my joints had swollen and given up. You didn’t see that as soon as I was picked up from the train I had to go to bed for nearly 24 hours, waking to stretch with my weights to try and help with the pain. This is the same of most my nights out. I start by getting ready and really excited, but I am always tired and worn out by midnight at the latest. I always end up dancing from a chair, I always take days to recover from all the movement I am not used to.

6. My holidays.

I love going to Center Parcs, I went there on my honeymoon in February and again last week. A lot of people love going abroad but many of these people do not have unpredictable health conditions. What you cannot see about EDS is that we have issues with traveling long distances. Center Parcs is an hour and a half from my home, which is far enough to get away but not too far that I am hurting before I get there. The place is enclosed so once I am there I do not have to move around too much. There is a water park which I can tread water in and move my joints in, it is like hydrotherapy to me but people who can’t see my illness would just see that I am having fun and splashing with my family, which is great.

Finally you can rent trikes. What you cannot see about photos of me happy on my trike at various getaways to our “second home” is the reason behind my choice of transport. You cannot see that my condition means it is dangerous for me to have a bicycle that could fall over, or could injure me if I was off balance. I have been advised by doctors on more than one occasion to not try to ride a bike; trikes are amazing. I would buy one if I knew I would have the energy to get it out on a regular basis.

7. My Energy

This brings me to my final point, what cannot be seen about EDS – how much energy I have. One of the long list of symptoms of EDS is lack of energy. As stated above, on nights out the energy dwindles as the night goes on, on day trips I cannot rely on energy. I remember my wedding day. I was so happy but ready for bed by midday. By the end of the evening I was asking people to pick up my dress while they spoke to me because I did not have the energy to hold myself up with a princess dress on. (Another EDS related issue – I was bruised all of my honeymoon and am now scarred from wearing a dress for one day. I am sure a “normal” person would not have even realized was heavy!)

Energy can be dangerous. It’s a “friend” losing, argument starting issue. People tend to think that we are all the same. If they have the energy to see me after a hectic day, how can I say that I cannot leave the house after 12 hours sleep? What you cannot see is that when you live with EDS, you start the day with little energy. Then you have to deal with pain, anxiety, dislocations and subluxations.

There are so many more issues that people with EDS face, as well as all people with invisible illnesses. I agree it is difficult to understand something that cannot be seen. Hopefully this article has helped people without the condition to understand and helped people with my condition to realize they are not alone.