May is the awareness month for Ehlers-Danlos Syndrome (EDS) - something you may never have heard of before. It's a connective tissue disorder that affects collagen within the body. There are 13 different types, affecting all different parts and systems of the anatomy, including joints, skin and organs.
The type of EDS I have is called Hypermobile Ehlers-Danlos Syndrome (hEDS). This means my joints are mainly affected, and they frequently partially dislocate (sublux) or dislocate fully, often without my having done anything other than sitting down!
Zebras are the official mascot of Ehlers-Danlos Syndrome. Doctors in training are often told "when you hear hooves, think horses, not zebras," meaning that if someone presents with certain symptoms, think basic conditions and diseases, not rare ones (i.e. like Dr House comes up with). Many types of EDS are very rare - in fact, they were all considered rare, but it's now thought that the hypermobile type isn't as rare as it seemed; rather, it's under-diagnosed. Therefore, the 'zebra' is actually appropriate in our case.
What symptoms are featured in EDS?
Because Ehlers-Danlos Syndrome affects collagen, it affects every part of the body. With Hypermobile EDS, the main features are musculoskeletal symptoms, joint instability, poor wound healing, TMJ (Temporomandibular Joint Dysfunction), easy bruising and soft skin that tears easily. There are also other symptoms that aren't included in the diagnostic criteria, such as orthostatic tachycardia, digestive disorders, pelvic and bladder dysfunction, MCAS (Mast Cell Activation Syndrome) and anxiety disorders.
Personally, I find the most difficult symptoms are the joint instability, fatigue and chronic widespread pain, as well as acute specific joint pain; however, I'm also affected by orthostatic tachycardia, particularly in the form of heart palpitations and dizziness, various allergies (possibly caused by MCAS), and some digestive issues.
Is there a cure?
Sadly not. EDS is genetic and can be progressive if not kept under control. It can only be managed in the day to day with coping strategies, medication and physical therapies.
It's also somewhat of an invisible illness, as unless you use a wheelchair or mobility aid, you wouldn't necessarily know someone had it. This makes it difficult to achieve a diagnosis or understanding from some doctors and medical professionals, especially when some sufferers can present with a myriad of symptoms, as the condition is multi-systemic. Many people spend years fighting to have their symptoms acknowledged and be given a dianosis. The current average for someone with EDS to go from first visiting a doctor about it to diagnosis is 10 years - that is not okay!
The types of management vary from person to person, but for me, they include using painkillers; regular chiropractic treatment and sometimes physio; exercise, such as pilates for core strength and stretching, and weight-lifting to build muscle strength/tone and stability; and a number of everyday techniques, like fidgeting, using heat and cold, and pacing.
Some people have to use mobility aids, like walking sticks and wheelchairs, but not necessarily all the time. This sometimes prompts prejudice from able-bodied people, as they see those with invisible illnesses as faking their symptoms. The problem is, you can have good days and bad days, as anyone can with chronic health issues, and therefore will need more help and support on some days than others.
What a day with EDS is like for me
Living with EDS, for me, is a bit of a gamble - there are some days that I’m “fine” (i.e. I always have generalised pain and fatigue, but some days I’m able to cope with it that much better because of certain coping mechanisms, joint supports, exercise and pain meds) and others that I can’t get out of bed because I’m in so much pain. Thankfully, the latter happen much less often, and I’m usually able to do things I need and want to do.
When I wake, I often feel pain and numbness in my wrists and ankles, and am still fatigued, as I don’t sleep brilliantly. I take pain medication and supplements, then get my little girl sorted with a nappy change and bottle. My shoulders, wrists, back and ribs have taken a bit of a beating since having her, but I wouldn’t change it for the world. When I was working full time at my old job, I’d have gotten ready for work and taken a packed train, where I’d normally have to stand amidst the crush of people for 30 minutes, then walk to the office. Not the nicest commute! Certainly no fun for some who struggles to stand in hot, crowded places for a long time. I much prefer hanging out with the bean ;).
Throughout my day, I can be just getting on with some chores, picking up - or playing with - my daughter, or even simply sitting on the sofa, and one of my joints will come out of place. Sometimes, it’s only a bit uncomfortable and will sort itself out on its own in a few hours; other times, it will be out all day or need putting back in by/manipulation from a medical professional. The time where the joint is out can be really painful, and even when it goes back in, the damage to the surrounding muscles is already done. When it’s bad, it’s hard to concentrate. I get very clumsy, and often trip or drop things. My mood drops - I become irritable or very teary because I’m fed up of it happening again, and it just bloody hurts.
Fairly often, painkillers don’t do much. I’ll resort to physio and/or pilates exercises to relieve tension, trying to work the joint back into place. Heat and ice packs are good ‘go-to’ things to help manage the pain. Joint supports or KT tape keep me going in the day to day. A lot of the time, all I can do is distract myself until it settles.
Sometimes, I get heart palpitations and dizziness from the pain. This compounds the fatigue I’m already feeling, and I usually need to sleep it off to be able to function again.
All of this will be going on while I’m trying to go about my daily tasks. Most of the time, you won’t even know I’m hurting or wearing supports under my clothes. I don’t like asking for help. I’m even worse at pacing myself! However, if I’m a little off or seem irritable, please don’t take it the wrong way. It’s more than likely not meant towards you; I’m just trying to deal with all the above alongside everything else going on in life/the world etc.
I have a number of coping strategies to help keep the bad days to as much of a minimum as possible. These include exercise, sports massage and seeing a Chiropractor and Physio, as well as the above (pain meds, heat and ice, stretching etc). Definitely need to work on the pacing. Trying to fit too much into a day is one of my biggest weaknesses!
I’m not describing all of this to ask for pity or sympathy. It’s just to give a little insight into my daily life, and the lives of others who have this condition. I know I have things a lot better than many who suffer with EDS (hypermobile or otherwise). My heart goes out to those that are struggling.
What we're aiming for this month is not only to raise awareness in the general public about this not well known condition, but to ask people to be compassionate and have understanding for those with chronic illnesses, particularly invisible ones. It can be a real struggle to ask for help or adjustments in daily life and not feel like a burden to others - by being open to someone's needs, you're not just being considerate, you're helping someone to function as normally as they can in a world that doesn't always make it easy for them.
Thank you for reading!
Please note that I'm not in any way a medical professional, and can only speak from my own experience and referencing information from the Ehlers-Danlos Society/Ehlers-Danlos Support UK.