May is Ehlers Danlos Awareness Month.
We all have so many varying manifestations, but we all have one thing in common. We are all chronically ill. Chronically fabulous, illin' and chillin', masters of the couch (at times), you name it. We can all learn from each other, even though our symptoms are different. Coping mechanisms can be universal, and altered to your needs. Which is why I could not be happier to bring you a series of articles aimed to bring you healthier options when dealing with your chronic illness.
I've teamed up with an amazing friend from the UK who has really brightened my days. Sophie may not have EDS, but her chronic illness resume by far puts her level of understanding and her knowledge above the vast majority. By sharing our working knowledge of how we cope and live through our illnesses we can at least harbor a greater understanding among ourselves, for a better and healthier experience.
I have also hustled up some amazing giveaway prizes for my chronic illness buddies, so keep your eyes peeled. We'll be gifting sleep aides, beauty swag and offering plenty of coupon codes! Let's start off with an introduction, interview, and amazing giveaway with Integrity Botanicals which will run through May 31st. To enter please see our Instagram post with this photo for full details (link at bottom of page) on how you can get in on all of these amazing, (and personal favorite) brands. Or click on the photo to go to our page!
So who's helping me run the show?
Meet Sophie Savage, FdSc, BSc, MSc (Foundation Degree Sciences, Bachelor of Science, and Master of Science)! Sophie is a definite beacon of light, and tower of reason. A student of Psychosocial Studies, a professional patient, chronically ill sister, licensed massage therapist, aromatherapist, and creator of the Nimbus Cloud feed (and food) on Instagram. Beauty, and brains. It actually happens more often than you think!
I interviewed Sophie so you can get to know her a little better, and understand why I couldn't resist asking for her help.
You can also click on her photo to see her beautiful feed!
EDS Needs: What are some implications of your specific illness?
Sophie: One primary implication is a lowered immune system, because of the drugs that help keep my body from rejecting my liver. Most people with a chronic illness have a lowered, damaged, and/or fragile immune system. Just like those with other types of chronic illnesses, it is VERY common for me to also have a slow acting immune system, and it is very important for me to be mindful that having a suppressed/reduced immune system I am prone to getting ill more often, and recovery time can be longer. The implications can also mean extended/unexpected hospital stays, and weeks on IV (intravenous) medications. With a suppressed immune system, one bug may not be responsive to the right antibiotic, especially for those who have had a huge amount of antibiotic therapies, and/or do not respond well to antibiotics.
Liver transplantation has only been done for 30 years. Those who were the first to receive successful organ transplants are known as pioneers patients, and are studied by gerontologists. They don't know the long term effects of these serious medications, or how long the grafted liver is going to continue to function. We are taking medications at a younger age, that most people are starting much later in life.
Isolation is also a serious and generalized implication.
EDSN: What do you want readers to take away from your experiences or these articles?
I think a sense of community is really important. An idea that you might exist in a world whereby you only see a few people, and most of those people are medical professionals you are on your own a lot, and you feel that no one in your world understands what you are going though. We want to let you know that you' are not on your own. We, chronic illness patients, can be really lonely. However there is a commonality among us. Mine and Melissa's friendship is a testament to that. Even if what you are going through is absolute hell, there is a community where everyone is giving each other a supportive arena. If even the tiniest detail of these articles is helpful to anyone, then it was all worthwhile.
EDSN: What brought you to the social media front?
Growing up I did not have a lot of friends, and growing up in the hospital many of my friends died. I did well in school academically, but I was horrifically bullied all the way through because of the way I looked, and preferential treatment the teachers gave me only made matters worse. I had stick thin arms and legs, a huge tummy, blood vessels that would burst, and I looked like a Simpson character, so basically from ages 4 to 11 I had no friends. The first two years of secondary I had cancer, so physically there was a lot to pick on, that came with a huge dichotomy of emotional baggage which doesn't boast well for friendships. When the internet became a thing I could tell people what I wanted to tell them, or not, and post photos I liked and put out what I wanted to put out and have interactions with people, and I wasn't always viewed as a walking alien. Online is a beautiful bubble where there is much respect and admiration and that's what I've always wanted in social interactions. Important, meaningful, mutual admiration you can never find in everyday life. Normal people cannot compute the chasm of a new chance to present yourself in a way that you want to be presented, and find connections with people who respond to that, rather than things society says that I should be to be a prospect for social acceptance.
EDSN: What drew you to study complimentary therapies, and how do you think your background helps you in your current field of study, psychosocial studies?
I did complimentary therapies first because I was very frustrated with the biomedical system. Being in it my whole life, being in and out of hospitals, seeing different specialists, and different doctors. I had awful depression as a teenager and no amount of medication was making it any better. My whole life I'd been indoctrinated "you take a pill," and that's it. I realized its not enough to take a pill on time. Being a teenager and trying to figure out who you are, and your place in the world when you have all this extra stuff is... I had a depressive episode coming for years and it was very important for me to look for an alternative. I found the world holism, and I loved the idea that you weren't looking at specific parts of the body, you were looking at the whole person, and I thought whoa that is amazing. What if every doctor asked me what was I eating and what was motivating me, and what was getting to me and troubling me . When I did massage, aromatherapy, and reflexology I loved the consultation process. I asked people so many questions and got a good picture of what kind of person they were, and I had not encountered that in the medical world. Maybe a brief "hows school going" in passing, but generally it was procedural. As a young person they wouldn't even speak to me, they would speak over to me to my parents. I became cross, and made them explain it to me in a way I understood before any procedures were authorized. Even something as basic as being properly relaxed after a a massage after having huge amounts of anxiety was a huge revelation to me. Reiki I just didn't understand, absolutely nothing. If it works for some people great, but I wasn't getting a thing. Crystal therapy. Nothing. Power to you. Manual lymph drainage and insomnia massage were mind blowing. Being able to watch the transformation of massage therapy in people with insomnia was amazing.
I started learning a little bit about psychology and it was so interesting. I started having a way of looking at things with a conceptual framework that considers philosophy, psychology, and historical dynamics. An understanding of something is so important, and incorporating subjectivity in such a way that allows you to add something to a subject that no one else can, is transforming. My life experiences are valuable in that way, and adds a whole other level to a holistic way of thinking, and research using my own experiences. It makes me a therapeutic tool, and has opened up the way I think from, which pill do I need to stop this unbelievably low mood, to someone to being open to trying so many different coping mechanisms I would have never considered in my teenager-dom.
We want to be perceived healthy, whole human beings. Not broken parts of something. Attractive in all fields, education, job, sports, not a victim or lesser in any way shape or form, and it takes a huge amount for some people. "But that's what everyone else is doing." The pressure that you have to be doing certain things in a certain way, and not playing the "sick role." People don't like to acknowledge what is wrong, or that it can lead them to being in a sick role.
EDSN: What helps you see through the storm of chronic illness?
There will not be a time in my life that I'm not taking meds, or engaging with long term specialists, although I go through periods where I am generally well there are always daily challenges that remind me there is a lot going on. Essentially I swapped a terminal illness for a chronic illness. I've learned ways of concentrating on trying to get through whatever experience comes at me. You've done this before, be your own cheerleader. There are times where it's impossible for someone to physically be there for me, and I would have to learn to remind myself that it's alright, but you can do this. Keep going. Keep the faith, you've got it in you to see it through whatever experience you're going through. When your anxious or alone it can be hard to remind yourself, to tell yourself "you can do this," but this is the time you need to make an action plan. When you have no choice but to, although it puts a lot of responsibility on yourself, it is important to remember that no matter how much family is around the only people you really have all the time is you. It is empowering. People want to help, but might not know how. You need to teach them. You also need to be able to communicate how you need help. You have the responsibility to help others look after you so you don't harbor resentment, and create frustration in the other person. Communication is so hugely vital. Finding the right language and the right tone after the peak of an incident has happened is paramount. You don't have a choice with chronic illness, but you do have a choice about who you surround yourself with. In an acute situation, get the help you need, get to a doctor or a safe place, this is key. Get yourself to the right environment. When the time for communication arises use phrases like "can we talk about this," we are not telepathic. You need to communicate, "this is what you did, this is what I wish you did, and this is how your actions made me feel."
EDSN: What is the most important thing you think you will take away from our discussion?
You are an absolutely bundle of knowledge that I can take away from and use in my everyday life. I would be reading these articles anyway, so now that I'm going be able to contribute and get so much from this is fantastic. We've amassed so much we need to pass it on.
Now you know why!
The last year, after diagnoses, has been eye opening in so many ways. Our chronic illness paths are so long and intertwined. Diverse and similar at the same time. Being able to connect with people who understand me on a level that I have never even been open to sharing in the first place has been emotionally healing, freeing and inspiring. I hope these collaborations inspire, and ease your suffering in unexpected ways. Like and comment below to share your story, what you would like us to cover for you in the future, and how your illness has changed your lives.