The questions I asked Lauren are bolded and italicizes. Please be respectful of her and her journey as she shares her journey living with Kyphoscoliosis EDS and much more.
Learn about kyphoscoliosis Ehlers-Danlos Syndrome. https://ehlers-danlos.com/eds-types/
What is your name, and disease/invisible illness/mental health? My name is Lauren I live with Ehlers-Danlos Syndrome – type 6 (kyphoscoliosis) Fibromyalgia, Social Anxiety disorder, clinical depression, cluster headaches/migraines suspected POTS & panic attacks.
When did life change for you? 24th April 2017, the day got my diagnosis for Ehlers-Danlos Syndrome.
What was life like before diagnosis? Painful & almost shameful because I felt like I didn’t have a reason to complain about my pain.
How has your diagnosis changed your life? It’s proved to others that I really can’t do what others can & It’s made me think a lot of my future.
Please describe the best you can a day in the life of you? Usually, if there’s nothing I have to do I wake up & take my tablets. (8 in the morning) id usually try eat as early as possible because of my painkillers, have a bong/joint to help with my chronic back pain & I try my best to spend around 15 minutes cleaning my own personal space, even if that means I have to sit on the floor to be able to fold all my washing without fainting. Small progress is always a victory so I usually reward myself when I’m able to be productive, even ir that means an extra joint/bong or a can of energy juice it helps a lot.
What was/is the most challenging thing you have faced because of your diagnosis? My biggest challenge is trying to manage daily life & my chronic illnesses as it’s so hard to know when you’re going to have a good day or a bad day. So making plans and sticking to them is always hard.
Do you find that you can keep up with others? Not at all, before my fibromyalgia was triggered in 2013 I would have been able to do a lot more.
What would you tell others living with your diagnosis? Even if people are expectant of you, you’re allowed to say no. Your health comes before other people’s happiness.
What would you like to tell others that don’t live with a similar diagnosis? Although you can’t understand entirely what we go through on a daily basis, just try putting yourself in our shoes and keep in mind that everything that we do requires twice the amount of energy as ‘normal’ people.
“Thank you so much Lauren for sharing your journey with us. I agree with you ones health is way more important then keeping others happy. I also agree with you when you say, “A small progress is a victory.” You are not alone in your journey, us zebras need to stay together. Living with Ehlers-Danlos syndrome can be trying, please know you are welcome to reach out to me and others in the EDS community for help. Do what is best for you. Hopeful always.” -Anna