Have you ever been told that you’re “double-jointed”? For some, it’s just a cool party trick. But for others, it can be a sign of a condition called Hypermobile Ehlers-Danlos Syndrome (hEDS). hEDS is a connective tissue disorder that affects the collagen, which is the protein that gives your skin, joints, and tissues their strength and structure.
While hEDS isn’t the most well-known condition, it’s actually thought to be the most common form of Ehlers-Danlos syndrome and recently, at the age of 36yrs I found out that I have it after a lifetime of unexplained symptoms. So, what does it mean to live with hEDS? Let’s take a look…
The Signs And Stretches Of hEDS
The hallmark feature of hEDS is joint hypermobility. This means that your joints naturally have a greater range of motion than usual. You might be able to bend your fingers way back, or your elbows hyperextend. But loose joints can also lead to instability, pain and frequent dislocations. My hEDS was discovered after my finger continuously started to dislocate in my mid-thirties, which is a symptom that I hadn’t experienced until now. I have been super flexible since my childhood, before ever training or stretching, decades before training to become a professional natural bodybuilder and fitness journalist, writing for and featuring in worldwide fitness magazines in my twenties.
hEDS can also affect other parts of your body. People with hEDS often have soft, velvety skin that bruises easily. Fatigue is another common symptom, along with digestive issues, dizziness, and problems with internal organs. My medical records are littered with episodes of me fainting without warning and having being dizzy spells.
I’ve suffered from IBS my entire life, which has gotten worse with age and have often collapsed from sheer exhaustion which was always excused as an acceptable and expected part of life from being a parent, dealing with stress and responsibility or leading a plant-based diet and therefore needing more iron as opposed to finding and treating the root cause of my symptoms.
Seeking Answers, And A Diagnosis From Your Doctor
Doctors diagnose hEDS based on your medical history, a physical exam, and sometimes your family history. After years of unexplained symptoms, it was in fact a stranger on the internet who commented on my tik tok, after noticing that my arms are hypermobile, and asked me if I had hEDS to which I had to google it as I had no idea what it was. A few weeks later my doctor diagnosed me and everything within my life made so much sense.
Your doctor should ask you about your symptoms, when they started, and how they affect your daily life. They’ll also want to know about any past injuries or surgeries that you’ve had, and for me, whilst my symptoms were inconvenient and uncomfortable growing up, they’ve now got to the point of pain, dislocations and premature labour with both of my children.
The doctor performs a physical examination to check your joints for hypermobility, which means they must be able to move beyond the normal range of motion. They’ll also look for other signs of hEDS, such as very stretchy skin or easy bruising. I had a black finger at my appointment because of my knuckles dislocating. It’s worth nothing that if you have a close relative with hEDS, it’s more likely that you’ll have it too.
The diagnosis of Hypermobile Ehlers-Danlos Syndrome (hEDS) is based on two main criteria:
Criterion 1: Generalised Joint Hypermobility: This assesses your joint flexibility. There are age and sex-specific scoring systems using the Beighton score, which involves various tests of joint mobility. You’ll need to meet a certain score based on your age and gender.
Criterion 2: Two or More Features from Category A or Positive Family History. Category A includes features related to skin, tissue, and certain physical characteristics. You need at least two of these, though there are many more listed. I shall mark those that I have with a tick for reference:
- Unusually soft or velvety skin – ☑️ My skin has always been very smooth and silky
- Mild skin hyperextensibility (increased stretchiness) ☑️ The skin on my torso is incredibly stretchy even before having my two children
- Unexplained stretch marks (striae) ☑️ I have had stretch marks to my stomach, hips and thighs from a young age
- Easy bruising with minimal trauma ☑️ The slightest bumps or knocks make me change colour
- Recurrent or multiple hernias
- Specific types of scarring ☑️ I have raised scarring all over me from small and large traumas
- Organ prolapse
- Certain facial features and dental crowding ☑️ I had two upper teeth removed due to over crowding
- Arm span to height ratio exceeding a specific value
- Mitral valve prolapse (diagnosed by echocardiogram)
- Aortic root dilatation (diagnosed by echocardiogram)
Following my diagnosis, my doctor listed to my heart with a stethoscope and then booked me in for a blood test, ECG and echocardiogram to determine if my condition is vascular, as this can in some cases limit life expectancy. The ECG involved returning to my doctors surgery to have a follow up appointment in which a series of sticky pads were placed around my heart and chest and then wired to a machine. I laid on the doctors bed for a few minutes as it monitored my heart, before my doctor translated the results for me for peace of mind before leaving my appointment. I was told that my heart is in good health and am presently awaiting my echocardiogram at the hospital. My blood results have also returned as overall good health, with my vitamin D being a little low and my kidney function lowering slightly since my previous test, however this may not be related to my EDS.
It’s important to note that your doctor will use their judgement and consider all your symptoms to make a formal diagnosis. This information is not a substitute for professional medical evaluation but can be a useful guide to understand if you may need a consultation.
Self-Testing For hEDS With The Beighton Score
The Beighton score is a nine-point system which is used to assess generalised joint hypermobility. The joints assessed are the knuckles of both left and right hand little fingers, the base of both thumbs, both elbows, both knees and the spine.
- One point is scored for each joint that meets the following criteria:
- Little fingers: Can be hyperextended (bent backwards) beyond 90 degrees with the forearm resting flat on a surface.
- Thumbs: Can be passively bent back to touch the forearm.
- Elbows: Can be hyperextended beyond a straight position.
- Knees: Can be hyperextended beyond a straight position.
- Spine: While standing with palms flat on the floor in front of you, you can touch your palms completely flat without bending your knees.
A higher score indicates greater joint hypermobility. There’s no universally agreed upon cut-off for a positive Beighton score. However, a common reference is that 4 or more out of 9 points suggests generalised joint hypermobility. It’s important to remember the Beighton score is just one piece of the puzzle. Doctors consider your age, sex and other factors when interpreting the score in relation to receiving a hEDS diagnosis.
Living With Loose: Challenges And Care
hEDS can be a frustrating and unpredictable condition. There’s no cure, but there are ways to manage the symptoms and improve your quality of life. Physical therapy can help to strengthen muscles and improve joint stability. Pain management is also important, and may involve medication, heat/ice therapy and relaxation techniques.
For many with hEDS, pacing and modifying activities are key. Learning to listen to your body and avoid overexertion can help to prevent injuries and flare ups.
Finding Your Zebra Tribe: The hEDS Community
hEDS is a rare condition that can sometimes feel isolating. But there’s a vibrant online community of people with hEDS who share experiences, offer support, and swap tips. You can also connect with specialist doctors and organisations for the latest information and resources online.
Living life with hEDS can certainly be a challenge, but with the right support and management strategies, you can still live a full and active life.
So Get Your Zebra Stripes On! Join The Ehlers-Danlos UK Dazzle Walk
The Ehlers-Danlos Support UK‘s Dazzle Walk has arrived for May 2024, and it’s a fantastic way to raise awareness for Ehlers-Danlos Syndrome (EDS) while also getting some exercise and having fun.
The Dazzle Walk is a fundraising event which is open to everyone. Whether you can walk 5 km or 50,000 steps, there’s always a way to participate because it’s all about getting involved, raising money for a great cause, and celebrating the zebra community. The zebra is the unofficial mascot of EDS as throughout medical students training, they are taught to think horse and not zebra – that is to say, what is the most likely cause of symptoms (the horse) rather than the rarer possibility (the zebra).
As EDS is a group of connective tissue disorders that can cause a variety of symptoms, including joint hypermobility, chronic pain, and fatigue. It’s often an invisible illness that people don’t realise or recognise, so the Dazzle Walk is a chance to raise awareness and show solidarity with those affected by EDS.
If you’d like to take part in this fantastic event then head over to the Ehlers-Danlos Support UK website where you’ll find all of the information that you need to register, set up a fundraising page, and download fun resources. You can then don your most dazzling zebra attire from black and white stripes to leggings and tutus, the more fun the better!
You can choose to walk anywhere that you like, for any distance that suits you.Whether it’s a lap around your local park with friends or a solo trek through the countryside, the choice is entirely yours. Why not get out in the beautiful sunshine with your family, friends and work colleagues to share your fundraising page and encourage them to donate or join you upon the walk.
The Dazzle Walk is a fantastic way to support the Ehlers-Danlos Support UK as the money raised goes towards funding vital research, providing support services for people with EDS and raising public awareness. It’s always a great day to take exercise, have fun, and make a real difference to the EDS community. I would like to send love and light to you all, a deep-hearted hug and supportive hand towards whatever challenge and obstacle comes our way in life.
Exercise & Movement For Adults With hEDS
Ehlers-Danlos Support UK is a hub of information for all things hEDS, and after reading through their extensive information I thought that it may be helpful here to summerise some of the key points when it comes to health, fitness and exercise. Whilst you can’t prevent yourself from having hEDS/HSD, you can still help to minimise the risk of developing developing further conditions such as diabetes, high blood pressure, high cholesterol, heart disease, obesity, osteoporosis, arthritis, depression and anxiety by taking safe and frequent exercise.
Challenges that a person faces with hEDS when it comes to exercise may include unstable joints, chronic pain, postural tachycardia syndrome (PoTS), limiting gastric symptoms and fatigue, yet taking exercise is still very important, offering you the opportunity to improve your functional ability rather than sitting down all day and seizing up.
Firstly, it’s important to ensure that you speak to your GP or medical professional to ensure that you are suitable to take exercise, which may also include speaking to a cardiologist, physiotherapist, gastroenterologist or rheumatologist. As everyone is individual, and hEDS/HSD affects everyone in different ways, it’s vital that you have an individual assessment for your ability rather than follow a one-size-fits-all programme, as through a professional assessment you can determine the most appropriate exercise regime for you to follow. A physiotherapist is also able to monitor and adapt the exercises that are most suitable for you accordingly.
When it comes to cardio, it’s best to start with low-intensity exercise for 5-10 minutes at a time, two to three times per week. Walking at your own pace is a wonderful way to keep active, get outside and enjoy the calming effects of nature. Start small and build up gradually if and when you are able to, as doing something is far better than doing nothing.
Focusing on strength exercises, such as lifting weights, enhances muscles, ligaments, tendons and bones, making them stronger to reduces the risk of injuries whilst supporting your joints. Starting off with bodyweight exercises, such as sitting on a chair and standing up, can gradually progress to using resistance bands and even dumbbells as you gain strength. However, it’s important that you listen to your body, start low and build up gradually, stopping as soon as you feel any pain, or if your daily pain should worsen.
The basic level mat-work exercises of pilates can be modified to be suitable for hEDS by building core strength, taking caution to avoid excessively difficult movements and making sure that the correct posture is maintained and targeted muscles are working – the instructor or physiotherapist can advise on what modifications may be best.
Despite being hypermobile, parts of the body can still get stiff if unused, which is a common complaint. This occurs because of poor posture and being static for too long, as many tend to sit, stand or lie in one position for extended periods of time throughout the day. It’s important to change position regularly, perform gentle stretches and mindful movements to address any stiffness that develops. Yoga can also be a useful tool providing you don’t over stretch or hyperextend your joints. You can find more detailed and in depth information about exercise and movement for adults with hEDS here.
I hope that if you are facing these symptoms, or know somebody affected by hEDS, that you may take comfort in knowing that you are not alone and there are answers and support available.
UPDATE: Media Coverage
I’ve had people from far and wide get in touch with me via social media to tell me that news of my diagnosis has spread across the UK media, and now overseas to America and Australia, as they send love and well wishes for my journey ahead which has been incredibly touching.
Just this morning I received a phone call from the hospital to inform me that my echocardiogram will take place this weekend at a nearby hospital – 30 days after receiving my EDS diagnosis from my GP. It should take around 30-40mins to complete and I’ll be off to celebrate my daughters grandmothers birthday with a trip to an antiques fair and afternoon tea immediately after my scan, which is a concept that really hits home the severity of this syndrome.
I must confess, I’ve had more than a few overwhelming thoughts of never seeing my children grow up, flourish and have their own lives and children, or ever meet my grandchildren. The birthday that I’m about to celebrate may be an age that I will never live to see myself. The moments that I spend and share with my loved ones now may be shorter and sweeter than I ever deemed possible at this age.
But on the flip side of that, I am truly thankful for finding out about my EDS now, rather than when it is too late, and as a result of this, having the time and potential to make the most of my life, whatever my scan results may be, for as long as I am blessed to have. They say that it takes a life changing event to truly put everything into perspective, and this has certainly been a moment of such magnitude. My heart aches for all who are touched by EDS, the pain, fear and uncertainty that it brings, but also the gratitude and purpose that it nurtures from deep within. It has been such a humbling sense of grounding that I didn’t expect to experience in my thirties.
Whilst the media may be limited in the wealth of information and advice that they can share about specific medical conditions and syndromes, and headlines and statements out of context may seem shocking at first glance, I’m determined to use my reach as an influencer to make a positive difference and raise awareness for the EDS community.
As a member of the Sintillate Talent influencer agency, I am honoured to have spoken with the company director and Senior Fundraising Manager of The Ehlers-Danlos Support UK charity alike, to be able to connect the two to collaborate on an EDS awareness campaign that I’ll personally be orchestrating along with ten fellow influencers. The more that we can speak about this syndrome, recognise the symptoms and take positive steps forward, the more lives we can change, improve and potentially save along the way.
If just one person achieves a diagnosis from raising awareness, imagine the time and resources that it can save the NHS to not look in the wrong direction when trying to understand the cause, improvement or prevention of chronic pain and symptoms related to EDS. This evidently frees up time and funding for other medical conditions, life saving surgeries and diagnostics.
For this reason I will be sharing all details about my echocardiogram appointment here and as much information and advice as I can, from my own experience and unique perspective, in the hope that it may help you or your loved ones to understand and find peace should you be walking the same path. Together we are stronger and can be the change that we wish to see; let’s talk more about our symptoms and health concerns rather than suffering in silence.
My Hospital Appointment
Today I went for my echocardiogram at the hospital which involved repeating my ECG -attaching sticky pads across my chest and ribs to wires- along with an ultrasound to my heart. To have the ultrasound, much like during pregnancy, a cold gel is applied to the skin and a hand piece moved across the left hand side of my chest, ribs and collarbone.
My appointment took around half an hour in total and I was asked to take off my clothes from the waist up and put on a front-opening gown, before laying on my left hand side on a medical bed with my back to the nurse who stretched an arm across me to take measurements as she worked on the computer screen behind me which I couldn’t see.
This scan allowed her to scan around my heart, clicking measurements and taking screenshots of my heart contracting and relaxing. She instructed me to take deep breaths at certain points, to inhale and exhale fast and slow, and at one point to hold my breath for a few seconds.
The test itself is comfortable, perhaps an unusual sensation to have a chest ultrasound when I’ve only ever had it on my stomach before, but it certainly wasn’t painful or uncomfortable. And with my back to the nurse and the lights turned down low it wasn’t embarrassing or awkward at all. To think that this is a common procedure and they see so many patients each day, there is no need to be nervous or embarrassed. If anything I felt so relaxed and cosy that I could have easily fallen asleep.
I asked the nurse if she was able to interpret the results whilst I was present, for peace of mind, but she advised that it takes around two weeks for all measurements to be reviewed and an outcome decided, as it’s not as easy as saying yes or no to “am I ok?”
However, she was able to reassure me that if she had noticed anything severe during the test then I wouldn’t be going home after my appointment and would be kept in hospital for monitoring; it was nice to know that anything concerning would be handled immediately. So to be told that I could return home and wait for my results from my doctor in two weeks was a relief in itself.
Whilst I haven’t exactly been given the all-clear, I also haven’t been flagged as needing urgent assistance, so that in itself is something to feel more comfortable about. In the meantime I’m focusing on my family, work deadlines and daily routine as a parent, trying not to dwell on what is outside of my control. Remaining calm, being accepting of what will be and appreciating the positives and blessings in my life is my aim right now.
After weeks of freakishly miserable weather in June, when I left the hospital after my appointment there was such beautiful a blue sky and bright sunshine, and a white feather fell at my feet despite no birds being around. I took this as a positive sign and instantly felt any tension or concern melt away. Life is such a miracle and each day is exactly what we make it. Regardless of what challenges and obstacles come my way, I will always meet them with an open mind and can-do attitude.
Raising Awareness For EDS
My heart is swollen for how proud I am of all of the influencers who took part in the awareness campaign that Sintillate Talent kindly allowed me to head in partnership with The Ehlers-Danlos Support UK Charity this June. I tasked the influencers to wear black and white, along with an EDS pin from the charity, and to share a caption detailing a key message.
The caption that the influencers used, along with attaching a charity information poster was: Today I am wearing black and white in support of EDS with @ehlersdanlosuk and @sintillatetalent 🖤🤍
The zebra is the unofficial mascot of EDS as throughout medical students training, they are taught to think horse and not zebra – that is to say, what is the most likely cause of symptoms (the horse) rather than the rarer possibility (the zebra). 🦓 🐎
The Ehlers-Danlos syndromes (EDS) are a group of connective tissue disorders that affect the whole body. There are 13 different types. Most are rare, with the most common type being hypermobile EDS (hEDS).
Common symptoms include joint hypermobility, and stretchy, fragile skin that breaks or bruises easily. Many also experience dislocations, widespread pain, and chronic fatigue. EDS can be a mostly invisible condition, but is multisystemic affecting many areas of the body at once.
If you want to find out more about EDS, The Ehlers-Danlos Support UK is a great place to start. They are a charity that works across the UK to support, advise and inform those living with EDS to improve quality of life. You can visit their website to find out more: ehlers-danlos.org
You can help to make life better for people with EDS by making a donation today. £15 could help the charity to answer a call from somebody who suspects they may have EDS and doesn’t know where to turn. That call could be life changing – giving someone the knowledge and confidence that they need to push for a diagnosis. Donate today at ehlers-danlos.org/donate #eds #heds #ehlersdanlossyndrome #hypermobility #hypermobile #edsawareness
I wanted this content created to slip seamlessly into the news feeds of everyday people, those with and without health conditions, to indicate how silently symptoms can affect our lives and how not every illness, disease or disability is instantly obvious to see. Sometimes people can be put off of viewing online content that is related to medical and health issues because it can be shocking, or look scary, painful or unsightly; wearing a specific type of fashion and explaining why you’re doing it is a really helpful tool to breech a subject without fear.
To see my social media feed awash with influencers wearing black and white, talking about and raising awareness for a condition that the majority of them had never heard of or ever knew existed, it filled me with such hope and positivity. For me this felt like planting seedlings, taking a gentle step forward to nurture discussion and raise awareness that may one day grow into something mighty in time. I hope that this network and audience may reach and inform people far and wide to encourage them to seek a diagnosis and address unanswered questions. Together we can be the change, stand up and be heard, ultimately changing and even saving lives.
I’ve had so many people reach out to me on social media after releasing my own content, telling me that themselves and children had unknowingly suffer from the same symptoms and are now seeking help from their doctor. One in particular that really touched me was a father telling me about his daughter, how nobody could ever explain or understand her leg pain, and how simple days out as a family left her in agony for days, but now suddenly it makes a little more sense to them and they can now take steps to better support her.
My heart goes out to all who are affected by EDS; please know that you are not alone and there are steps that can be taken to help. Even if you’ve only ever experienced silence, your voice matters and will be heard.
Life After Receiving My Test Results
After weeks upon weeks of nervously waiting, I received my test results via telephone during an appointment that I had made with my doctor, and had had to wait for a slot to become available. Despite having time to come to terms with the fact that I could hear good or bad news, it still left me feeling as though my future balanced on a knife edge. I tried to push it to the back of my mind, keep calm and carry on, but I found myself overwhelmed with emotion one day when I had my period. I’d felt so strong, confident and positive throughout that I would face whatever the outcome head-on, but with an influx of hormones from my cycle, I just couldn’t hold back the tears and overwhelming fear of the very real possibility of not being there for my children consumed me.
I cried myself to sleep, helplessly questioning “why me?” and the following morning I woke up with such a heavy head and heart for all of the “what if’s” that relentlessly flooded my mind. But afterwards, I felt cleansed. I was passing through the stages of grieving a future for my family that I may never have. But a part of me acknowledged that no matter how sad or uncomfortable I felt about this all, as sure as we are all born, eventually we must all pass away. We may never know how, when or why it will happen, or maybe it will be entirely evident to us, but we must all share in this experience which is impossible to escape. We can do so with love or fear, one outcome more welcoming than the other. Coming to terms with life ending is therefore an essential part of living in peace for as long as we are blessed to have left. I wasn’t expecting to mourn the thought of possibly dying so young, but in doing so, it gave me a sense of clarity and control over my day, my decisions and my priorities.
I felt sick waiting for the doctor to call me for my telephone appointment. I wanted to know my test results, but also wanted to have one final minute of not hearing bad news if that were to be the outcome. My mind split in two, with half of me wanting to know, but the other half desperately not wanting to know. A part of me was pumping with adrenaline ready to face the reality of my results, whilst the other part was a scared child. I felt everything and nothing somehow all at once. And I think that’s what’s so important to understand about this process, no matter how strong, calm and confident somebody is, there will always be a moment, a sensation or feeling that restarts the grieving process of living with an illness, disease or disability. It’s a constant journey of uphills struggles and restful tranquility, before the terrain changes again. You’re not either ok, or not ok, you’re constantly adjusting to maintain your footing.
When the doctor told me my results were clear, and showed no sign of having vascular EDS, it felt like my entire body turned to jelly as a great sense of relief and gratitude passed through me. The comforting words echoed in my mind and loosened all tension, stress and fear in an instant. To have felt so anxious, concerned and upset for so long waiting, only to have it swept away in literally minutes was so incredibly grounding for me. And after the call I reflected upon the people, so many kind souls, who had previously, or are yet to receive the opposite results to my own.
It choked me to think of how many lives could change from a simple telephone call such as this. For any illnesses, accidents, injury and hereditary concerns to make life as we know it suddenly, and totally, unrecognisable. And it’s the gravity of this that woke up a deeper part of me, to become more aware of truly living whilst we are still alive, no matter the time. To have true quality, regardless of quantity. Whilst I’ve always felt gratitude and compassion for life, and have had health scares in the past, this hit me so much harder this time and shook me out of my daily routine of work, bills and taxes.
So, after receiving my all-clear, I went to Turkey to have a breast reduction surgery, downsizing my bust three cup sizes. It was something that I’d been thinking about for quite some time, and the daily discomfort of having such a large bust seemed so unnecessary to me now. To truly appreciate what I want out of life, how I can live most authentically and wholeheartedly as myself, without the need to please others. It was an epiphany that I needed, and am so thankful for.
Private healthcare in Turkey is incredible, in less than an hour upon my arrival I had three tests to ensure that I was safe and healthy for surgery. This was a blood test, ECG and radiology scan of my chest which all came back clear. I then spent a week recovering in the sunshine of Istanbul, feeding stray cats, sight seeing, soaking up the sunshine and growing stronger each day.
Upon my return to the UK I received my Access Card in the post, which I received due to my hEDS diagnosis and allows me to not have to stand still on the spot, and have access to a public toilet. I’ve fought a silent battle everyday of my life, without anybody knowing I live in daily pain and discomfort, and my battle will only ever get harder. From constant stomach cramps to the sensation of flames travelling up my legs and fainting if I stand still for too long. I may be a bodybuilder, but standing on a train home or queueing for shopping cripples me for days on end.
Whilst I have a disabled son, I do not park in disabled or parent and child spaces because he doesn’t look disabled and I don’t want to receive abuse from others who need it more. On public transport I avoid disabled seats or crowed areas, and instead I try to sit in the middle of train carriages to not be in the way of elderly passengers or those with children who usually sit closer to the doors. As a single parent and business owner, I’m Mummy, I’ve always been the financial provider, protector, spider catcher, chef, gardener, chauffeur, house keeper and endless supply of energy, love and cuddles for my two children. I can’t be broken, I can’t have a day off, I can’t not show up. But I’m in pain, everyday, and I can’t deny or hide it away anymore.
Instead of forcing myself to stand on the train out of pride, and then suffering for days on end from the pain, I must now take a seat besides a teenager, twenty-something on an i-pad or fellow commuter listening to music without feeling guilty or underserving of sitting in a normal seat let alone going anywhere near a disabled seat or area. I carry my access card with me, but have yet to find the courage to use it or show it to anyone, because I’m still coming to terms with the fact that I’m deserving of this right. Only weeks ago I was normal, now I have a diagnosis and so much makes sense, yet so much I can’t yet get my head around. This wasn’t a choice, or a gradual journey, it was a curve ball out of nowhere when I’d always been told to be quiet and not complain because nothing is wrong with you. But it is, and always was, I just suffered in silence after always been turned away by medical professionals and my questions left unanswered; until a stranger on Tik Tok unlocked this door to an entirely new world for me by noticing my hyper mobility and deciding to point it out. And here we are.
I know that my access card is there should I be in too much pain and need to sit down or visit a toilet at short notice. With it I may be able to ask for help or understanding from others around me who could deem my actions of sitting or using a toilet to be lazy or selfish because I know that my internal pain and suffering is not visible. A smile and healthy exterior can hide so much; wearing gym wear, running a business and tending to my two children and home doesn’t mean that I’m not in pain, I just have nobody else to do it for me. Everybody gets tired, everybody wants to sit down at the end of a long day, not have to queue in the airport or wait for access to a toilet when they’re desperate to go; as a hard working mother of two I understand the aches and pains of life, it’s not easy for anyone. But I have to be kinder to myself now, without feeling like a victim or weak I have to make a conscious effort not to cause unnecessary damage to myself anymore by trying to do what is beyond me in order to fit in and not offend anyone else or receive public backlash. I have to accept that my symptoms and suffering will only worsen with age, that what is invisible now may one day become incredibly obvious to others. And realise that I am as young and capable as I will ever be, right here and right now, and so I mustn’t waste a second of my life feeling sorry for myself, but instead love and support myself. And have these answers for my children who suffer the same, yet milder, symptoms to that of my own. I have to remove the prejudice and judgement now so that they don’t endure a lifetime of misunderstanding as I have.
My pain and suffering from hEDS will continue to worsen with age, but I can make the most of my life. I know that I can work towards processing, accepting, understanding and finding peace with finally having the answers to my questions that had been left unanswered for a lifetime. Whilst there is no cure for my pain, life goes on. These are the cards that I have been dealt in life and I can but make the best of it. With time I know that I will fully accept and better support my lifestyle with hEDS, adapting my way of life accordingly to minimise the struggles that I face. It’s been an awful lot for me to take in, in such a short space of time, and I’m still waiting for the ripples in the aftershock to fully pass before I can move forward and make progress.
But with time we all have understanding, experience, wisdom and hindsight. September is World Pain Awareness Month and it’s something that I had never heard of before. On Instagram @ehlersdanlosuk writes: “September is World Pain Month, an awareness month dedicated to highlighting the challenges faced by those living with chronic pain and the importance of better support and management. It also provides a platform for individuals living with chronic pain to share their stories and connect with others who face similar challenges.
Chronic pain in EDS and HSD is very common and may be severe. It may be widespread or it may be limited to one are of the body such as a limb. Headaches and gastrointestinal discomfort can occur as well as joint, muscle and nerve pain. Management strategies include physiotherapy, medication, and sensible use of medical equipment such as splints and braces.”
I hope that in wholeheartedly sharing my thoughts on this journey, the fears, helplessness, ignorance and obstacles can be a cathartic experience for others facing the same challenges because you are not alone. That in sharing the changing of my opinions and mindset, towards recognising weakness and the inability to no longer be able to do simple things that I once was able to without pain, it isn’t the end. The life and achievements that I have worked so hard to build isn’t over; I can still lift weights, run businesses and love my children wholeheartedly. But I’ll take better care of myself now, know my limits and adjust my lifestyle accordingly – no longer a one size fits all, but a tailored plan as an individual for everything that happens beneath the surface.
When you’ve spent a lifetime of having to be strong and survive, it’s incredibly scary and unsettling for life as you know it to change in an instant from a diagnosis, health scare, illness or accident. But having answers, building a plan and understanding the right path to follow and the best direction to head in is half the battle. The rest is just taking one step at a time, each day as it comes, and listening to your body and needs rather than pretending nothing is wrong. It’s ok not to be ok. We’re in this together.
I hope that you will come back soon to see my updates and how I’m getting on.
www.Ehlers-Danlos.org
Facebook: ehlersdanlosuk
Instagram: @ehlersdanlosuk
X: @elhersdanlosuk
Tik Tok: @elhersdanlosuk
