Chronic Illness Spotlight is a series in which different illnesses are highlighted and a Chronic Illness Warrior that lives with the illness is featured. Today’s post will spotlight a Chronic Illness called Ehlers Danlos Syndrome (EDS) and Dysautonomia.
Ehlers Danlos Syndrome causes hypermobility of joints as well as other problems. Dysautonomia is an illness that impacts the Autonomic Nervous System.
Today’s featured Chronic Illness Warrior is Fern. She has a Masters Degree in Anthropology and she lives in Scotland.
Just by reading her social media profiles you can tell that she has a great personality as she has named her wheelchair Rollo! She is also an avid bookworm and loves to crochet.
Fern’s primary diagnoses are Ehlers-Danlos Syndrome and Dysautonomia.
Thank you, Fern, for sharing your story on The Frozen Mind.
Ehlers Danlos Syndrome & Dysautonomia
Briefly Explain your Illnesses
Ehlers-Danlos is a genetic connective tissue disorder that affects my body’s collagen. A metaphor to describe it is that most people have super glue keeping their body held together but I got chewing gum! It causes me to have lots of dislocations, subluxations and pain. I have problems walking as my joints like to go in any direction they feel like (including in ways they’re not supposed to) so I often rely on a wheelchair.
The Dysautonomia and POTS affects my autonomic nervous system, the parts of your body’s mechanics you don’t have to consciously think about; heart rate, blood pressure, temperature regulation, breathing, digestion, pupils response to light etc. I am an expert at collapsing, scaring doctors and paramedics with my vital sign readings and my heart usually assumes I’m being chased by a bear and acts accordingly.
How has your Illnesses Impacted your Life?
Before my conditions started to severely affect me I was extremely active and never really sat down for long! I used to love hiking, spending lots of time outside and was always doing something. I spent time living abroad in East Africa and Canada and also was studying at university and was planning on starting a PhD. Everything was going very well! I became unwell fairly quickly and have continued to deteriorate since.
I am now mostly bed bound and almost completely housebound, making it out about once or twice a month if things are going well and with a lot of planning. I rely on help to complete daily tasks most people take for granted such as preparing meals, having a shower and getting dressed. I am slowly learning to accept that stillness has now become part of my life and that pacing everything is essential.
As a result of the Ehlers Danlos Syndrome and Dysautonomia, I now spend far more time reading, cloud spotting and have taken up new hobbies such as crocheting and taking courses online on subjects I had never looked into before.
As a result of becoming unwell I now spend far more time reading, cloud spotting and have taken up new hobbies such as crocheting and taking courses online on subjects I had never looked into before.
How Long Did it Take to Get Diagnosed?
While I would have been born with Ehlers-Danlos Syndrome I was 25 when I received a diagnosis. I started showing signs, albeit fairly mildly, of Dysautonomia when I was 9 but received the diagnosis for this aged 23 when things had become very severe.
Now looking back over my childhood so many things make sense that puzzled doctors at the time from struggling to recover from illnesses, fainting a lot, to unusual injuries that I was prone to getting.
Getting my diagnoses turned out to be fairly lucky in the end. As I had recently returned from living in East Africa when I became extremely unwell it was first thought I had something tropical (having been passed through departments). A tropical disease doctor I had recently read an article about my conditions and thought that might be what I had. Fast forward a few more departments and referrals later and he was absolutely correct!
Why Do you Think it Took that Long to Get a Diagnosis?
Doctors have often never heard or come across my conditions before. They look for the obvious first and as my conditions affect so many parts of my health in many ways, the whole picture was never examined. I think there is also preconceived ideas that some people carry that young people shouldn’t be sick. If you show physical signs then this is probably anxiety or depression and they don’t look for a different medical cause. We don’t like the idea that young people can become unwell and we don’t like the idea that people can get sick and not get better. It be immediately terminal so we, as society at large, sometimes ignore these problems as we think science has a cure for everything, consequently diagnoses of these conditions is more difficult to get.
How is your Life Different Now Compared to a Few Years Ago?
My life is polar opposite now to how it was a few years ago. A few years ago I lived independently and had hitchhiked across East African countries on my own. I was involved in loads of activities and volunteered at multiple charities. I had loads of energy and could think of nothing more boring than being stuck in four walls with no fresh air for weeks at a time and would go stir crazy if I didn’t manage to make it outside everyday.
Now I count it as a good day if I manage to get dressed and a good month if I’ve left the house once! I also can’t live independently anymore and require support from others, have to wear a falls detector alarms and have someone with me most of the time. I’ve also learnt to accept small victories and see the small details in each day that can bring joy, which I had missed before getting sick. Before I was focused on big achievements and society’s ideas of happiness, now I am probably more appreciative and have more gratitude as a person.
What Do you Do on your Bad Days to Make Them Better?
There is no escaping the fact that bad days are difficult! They can feel overwhelming, long and lonely. They are also the days when ‘what if’s’ occur which doesn’t help much.
I acknowledge the bad day and try to remind myself that better days exist and they will return again. Bad days are just a fact of life. On a practical level I have a shoebox made up near my bed which is a survival pack for bad days. In it is a favourite box set, heat packs, ginger tea and sweets for nausea, favourite letters from friends and family, photos and a good book. If it is a really bad day, I just accept that nothing is going to happen and spend the day listening to audiobooks from my bed.
How Do you Handle the Isolation you May Experience Because of your Chronic Illnesses?
Isolation has been one of the main non-physical symptoms I’ve experienced of becoming unwell. It is now over a year since I last saw a friend of my own age in person. Most weeks the only person I speak to face to face is my Mum and medical professionals. People who you thought were good friends stop contacting you and it is very easy to feel like you are have just disappeared off the face of the world.
Equally though people may be in touch who you haven’t heard for for a while. I’ve found embracing technology and also good old fashioned letter writing is a good way of staying in touch and speaking to people if you are housebound. I am a member of several Facebook groups for people with chronic illnesses who have similar shared experiences and even though we’ve never met in person we can relate to each other and we don’t just discuss being sick either. Instagram is also a good way of keeping in touch with people and joining the chronic illness community a bit more creatively. I have a few friends who have become penpals and we swap letters back and forth. There is nothing better to improve a day than getting a letter through the post!
Isolation though can also be dealt with in other ways. I find writing helps, or escaping into a fictional world for a few hours can really keep it at bay and remembering not to look at the past through rose tinted glasses.
What Advice Would You Give Someone that is Trying to Get Diagnosed or has a New Diagnosis?
Firstly, you are still a person and you still matter. Things will change, friends will change, your life will change. People will tell you you don’t look sick, suggest weird cures and tell you to push through. You will wonder if illness is now all you are and wonder where the ‘real you’ has gone in all of this. You are still there and you still matter. Believe in yourself and remember you have worth.
Secondly, now is the perfect time to embrace being ill by doing things that you might not have done before or have considered. Yes, you might have physical limitations and little energy but find something you can do within those limits and use the energy wisely. Take a free course online on a subject you’ve never studied but are interested in. Take up a craft activity you can do on days you are stuck in bed. Try star gazing from your bedroom window on nights where insomnia hits and you can’t sleep. Pick up a book in a genre you’ve always avoided. You will be aware more now than ever before that life is short so embrace what you can still do and do it. So what if its July and you want to listen to Christmas music, if it will make you happy, then just listen to it. Happiness in these cases is more important than a perceived notion of what you should be doing!
Thirdly, start a joy jar! I really struggled when I first became ill with it feeling like the end of the world and focusing on the negative as there was so much of it. Then I started my joy jar. I write on a piece of paper all the things I am grateful for, the things that make me smile and the good days. My carer washed out an old jam jar for me and I put the pieces of paper in there to be read on the last day of the year. Everything goes in there that has been joyful; a good cup of tea, an amazing book, a sunset, watching birds out the window, an email from a friend, a good night sleep, you get the idea. It has changed my ways of thinking so I actively seek out the good instead of focusing on the bad.
How can My Readers Find You?
I want to thank Fern for sharing her story about Ehlers Danlos Syndrome and Dysautonomia. Her positive attitude and outlook through her struggles is incredibly inspiring. Please check out her blog and social media profiles to find out more about her journey with Ehlers Danlos Syndrome and Dysautonomia.
To Find Out More:
To find out more about Ehlers Danlos Syndrome, visit The Ehlers Danlos Society Website.
To find out more about Dysautonomia, visit the Dysautonomia International Website.
Want to Participate in Chronic Illness Spotlight?
Do you have a Chronic Illness that you would like featured in the Chronic Illness Spotlight? Just sent me a message via the contact page and I will send the questionnaire to you. Together we can break the stigma of Chronic Illness!