I am often asked ”What does it feel like to have Ehlers-Danlos Syndrome?” so I’m going to sort it out a little. It varies a lot from person to person, there are probably not two people with the same type of the syndrome who experience the exact same symptoms, but this is what it feels like to have EDS, for me.
If we ignore the symptoms are not constant, we’ll start with the basics. The muscles in my body work several hundred percent more than in healthy people, but not just when I move. They work 24-7. The muscles must ensure that the joints are in the right place, to make sure the arms and legs are pointing in the right direction. This leads to enormous muscle fatigue and pain in muscles, and I easily get cramps. Everywhere. I also have chronic fatigue syndrome, most likely since I always am in pain, but also because the body never gets to rest. I get a fever several times a day, when I exert myself. Like, walking.
This means that when I’m at my healthiest self and have a really good day (no herniated disc that affects the nerves, no dislocation, no large inflammation), I feel like you do when you have the flu. It is said to be equivalent to what it is to have EDS in my case, it is my kind of normality. I am always hurting somewhere, I’m always exhausted.
Then there’s the problems with joints, which is my main problem. Inflammation of the fingers and shoulder joints, sacroiliac joints, facet joints, the jaw. Things dislocate. It hurts, the first few times it’s scary, then you get used to it and the acute pain turns into a chronic version of pain. You simply learn to move the joints back by yourself, or with a little help.
Nerves get pinched. It causes things like carpal tunnel syndrome, golfer’s elbow and tennis elbow. My ankles are still in semi-good condition, but they’re the only joints that does not hurt all the time. Then there are the muscular problems which, unfortunately, are chronic in my case, lumbago and torticollis with severe cramps. They are more or less acute and obvious, but they never stop.
Connective tissue structures in me is very sparse. If healthy people are furniture from Harrods, I’m a cheap plywood shelf from Ikea with parts missing. This means that I don’t take up nutrients and medications nearly as good as a healthy person. Anesthetic injected has no effect at all. It affects all of me, all the internal organs, stomach, intestines, but also the skin, eyes, teeth and gums. I get a wound, it takes a few months for it to heal, and there will be a scar.
I have a few herniated discs because of the connective tissue defect, and had a few surgeries for previous ones. I can not lie on a flat surface for more than a few minutes without getting severe pain, my hands and fingers tremble and shake from fatigue and cramps, so it is difficult to hold things. And it hurts.
My shoulder moves back and forth, almost dislocating (subluxating), when I do everyday things like brushing my teeth, washing my hair or face. To have EDS means I can feel pretty good one day, be able to walk around town or doing something that requires a little extra effort, but be completely bedridden the following day and not be able to walk. Or vice versa. I never know how I will feel in a few days, so I can’t really plan things.
I don’t look sick unless I use a wheelchair or other aids, and people generally do not show a lot of respect when I ask for a seat on the subway. But imagine what it is to use public transportation when you have the flu with fever, cramps and back pain, for that is my most healthy self. To have EDS requires extreme caution, both from myself and others.
One thing that a lot of people misunderstand is joy VS syndrome or disease. I am happy and have fun like most others, even though I’m not healthy. I will never be healthy either, so it‘s no use dreaming about it. Most people might feel a little miserable when they‘re at home with the flu, but that’s other people and not me. I hate it when people attribute me with feelings they think I have. Let’s assume that you are a woman in her 60s who are at home down the flu, and you learn that you just became a grandmother. Or that you are a huge football fan and your team has just won the Champions League. The joy you feel is not in any way connected to being sick, so why would it be like that for anyone who is chronically ill?
Sure, feel sorry for me if you want. A lot of people with chronic diseases have a really hard life. It is a pity that healthcare workers in the county generally do not have any knowledge about what it’s like to have EDS or to handle EDS patients. It is a shame that it costs me huge amounts of money to get the care and assistance. It is a pity that my disability pension (which should pay for living somewhere, food, medicine, healthcare, aids, and of course things like clothes and other consumables) is $1000: – after tax.
It is a pity that I live in a cold country so that the joint problems are worse in the winter. But don’t think for a second that I feel sorry for myself just because you do when you get sick. I just want to live life as good as I possibly can and be happy, and I don’t need pity. It does no good. I need practical and financial help, I need caution and I need to do fun stuff. That goes a long way
For more information about the different types of EDS, guides for healthcare staff etc, visit EDNF.