What’s it really like to live with chronic illness every day? How do you deal with the physical symptoms, emotional turmoil and practical problems? In this interview series, real life ‘spoonies’ share their stories and tips.
Lara Bloom is the President and CEO of The Ehlers-Danlos Society and responsible for globally raising awareness of rare, chronic and invisible diseases. She speaks at conferences all over the world, lecturing to medical students and professionals, and supports specialists in the field by offering her experience as a leading Patient Expert.
1. Tell us a little about yourself.
My name is Lara, I was diagnosed with Ehlers-Danlos syndrome at the age of 24 after a 12 year odyssey of being mis-diagnosed. I have most of the multi-systemic features, including some other rarer ones that aren’t always typical wit hEDS as well as quite a few marfanoid habitus physical attributes.
2. When did you first get sick?
I was symptomatic from the age of 11 with a long 12 year wait with no answers for anything. My main symptoms were; chronic pain and fatigue, recurrent pneumonias and chest infections, endometriosis, polycystic ovaries, breathing issues due to a pectus excavatum. All these issues without getting to the cause of them.
3. In what ways does having Ehlers-Danlos Syndrome (EDS) affect your daily life?
The biggest thing that affects me is my autonomic issues, although they are well managed now with regular exercise and a good diet. My symptoms are much more manageable although I do still suffer with the issues that come with EDS, I currently have a big tear in my right glute, a labral tear in my right hip, a meniscus tear in my left knee as well as a tendon tear in my right ankle.
4. How do you handle everyday practical problems?
I have both of my wrists fused after fracturing them multiple times growing up because of how damaged the tissues were in my wrists rather than the bone fragility, so even opening jars or using my wrists for any intricate tasks can be quite difficult. Lifting heavy things because of issues with my neck, which makes solo travel quite hard.
Always having tips and tricks to manage can really help day to day, such as checking a bag in for a flight instead of carrying one so you avoid lifting anything heavy upwards, having a good suitcase on wheels, travelling with an iPad instead of a laptop for weight.
5. Do you have any tips on coping with symptoms? Is there anything you can do to prevent flare-ups or worsening of your condition?
The thing that’s changed my life is that I take a very high dose of vitamins (vitamin C up to 5000mg per day, vitamin D), exercise on average 4 times a week, as when the muscles are stronger in EDS it can really help. It’s important to respect the condition while you do these things, I do closed chain exercises to help with my tears, I don’t ever push myself in terms of stamina, I rarely run…I never run in fact, I walk. I keep my cardio limited and concentrate on strength building on the core and legs which helps with the autonomic symptoms. I’m also currently trying the Keto diet to see how it may help with inflammation, so far I’m finding it really good.
6. Being chronically ill comes with a lot of psychological challenges. How do you deal with the emotional and social side of having EDS?
It’s hard to have a condition that’s invisible for various reasons, people don’t always see the pain you’re going through but it’s also nice that you can walk around with a bit of a shield that no one really knows about, so it’s a blessing and a curse. I think the hardest thing to deal with when living with such a sporadic condition is people find it hard to know/understand the inconsistency with symptoms, so one day you can be absolutely fine and the next you can be really struggling, sometimes people struggle to get their heads around that side.
Sadly, what people tend to do is stay in a safe spot of worst days because they’re scared to have their good days as people can question them and sometimes not believe them. I struggled with that a lot growing up but I refuse to do that anymore and try to have as many good days as I can. I really wish and hope everyone out there with these conditions did the same but it can be really hard to not get that validation and to be judged for so long, it can really have an impact.
Plus the emotional exhaustion and journey of going through a long diagnostic odyssey of people not believing you, being called a hypochondriac, being bounced from one doctor to another, family and friends not understanding, that is all a huge toll so the earlier we can get people diagnosed and managed, the better.
7. You seem to be a high-functioning person, managing a demanding job with lots of traveling despite having EDS. How do you make that work?
It is hard, there’s a lot people don’t see. It helps that when I am in the UK I worked remotely from my home, which means I can pace a bit easier. Travelling is very hard but like anything, the more you do it the easier it gets. I find the more I do, the better I am, when I do stop and do nothing I become more aware of my pain and fatigue so I like to keep going as much as I can and that’s kind of how I make it all work.
I know that for me, rest doesn’t help, it’s like with chronic fatigue, you have a long sleep but you don’t feel refreshed afterwards. My attitude is, I could sit on the sofa all day and actually feel worse both physically and psychologically so I’d rather just keep going and feel better psychologically, which in turn can massively help with feeling better physically. That’s how I cope but I understand that it’s not the way for everyone.
8. How do you keep joy in your life on a day-to-day basis?
My life is full of joy, I’m very lucky to be blessed with wonderful family and friends, a little fluffy white dog and I get to see lots of the world and work with incredible colleagues. I think life on earth is a gift everyday, everyone should appreciate and enjoy. Doing something fulfilling and making a difference is incredibly rewarding and I feel very privileged and so grateful to be doing the job I do.
9. What would you like to tell others who are diagnosed with EDS?
I’d like to say that the road ahead is bright, it’s a time for optimism and positivity. This condition has historically been neglected in terms of funding, research and collaboration. With the launch of the Society, there’s now a global organisation that’s there and dedicated to finding the funds that are needed for research to facilitate the global collaboration needed to drive progression forward and we won’t stop until geography and wealth no longer determines your quality of life living with EDS and HSD.
Lara Bloom is the President and CEO of The Ehlers-Danlos Society and responsible for globally raising awareness of rare, chronic and invisible diseases, specialising in the Ehlers-Danlos syndromes, hypermobility spectrum disorders (HSD) and associated symptoms and conditions. Before joining the Ehlers-Danlos Society Lara ran EDS UK from 2010-2015.
Lara manages coordinated medical collaboration, raising funds for research and focusing on the global progression of EDS and HSD. She speaks at conferences all over the world, lecturing to medical students and professionals, and supports specialists in the field by offering her experience as a leading Patient Expert. You can follow Lara’s work on Twitter and Instagram.
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