What If...
Written by: Amanda Henderson, December 27, 2017
The New Year is quickly approaching. As I reflect on 2017 and it's victories and difficulties, I enter into the 'What If' mode of thinking. Being chronically ill in so many ways can be challenging, and truly life altering. I often find myself misunderstood and in a category all my own because of the differences I endure on a daily basis. People can often wrap their minds around parts of the disease, but complete comprehension of every facet of EDS and its comorbidities is often as rare as the disease itself. Most days, I simply defer to the expression, 'it is what it is'. Other days, it is difficult to come to terms with my limits and others' lack of empathy for them. These 'what if' thoughts for the day can help place others into my unique shoes. Some are probably relatable to a 'normal' daily life, but if all are relatable, then you probably have EDS or a similar chronic illness. I'll admit, I feel a bit exposed writing these down and sharing, but if it can make invisible illnesses more visible and help a fellow zebra, it will be worth it.
What If...
...there were only 0-5 items on any menu that you could choose from, and they still had to be modified for your consumption to keep cholesterol down so you don't have another stroke, or to keep you from having more inflammation, pain, and gastrointestinal issues?
...you had to take medication half an hour before each meal, and at bedtime, and other pills in between, to make food less apt to attack your insides and cause inflammation?
...you had tension headaches almost every day simply because your tendons and muscles aren't strong enough to balance your melon perfectly over your neck?
...you needed a walker and ankle, knee and S.I. joint braces to walk very far because neurological and physical issues cause your leg muscles to get weaker as they move?
...your feet were so flat that you had to use orthotics in your house slippers as well as your shoes, and you still developed nerve issues which cause severe foot pain when walking very far?
...you had to drink gatorade, salt water, and take potassium and magnesium supplements daily to try and have enough electrolytes for your body to function normally?
...you had to have four hour saline IV therapies to have the correct amount of fluid in your body?
...you had to urinate 10+ times a day simply because your brain sends the wrong signals to your bladder?
...you celebrated a relatively normal poo occurring?
...food made you so nauseous in the mornings that you opted for a protein shake instead?
...sleep wasn't restorative?
...your short term memory and comprehension of space and time were completely different due to brain trauma and/or brain fog, but a) you can't adequately describe what it's like and b) you don't really want people to know how difficult thought processes are for you?
...joints 'pop out' (sublux) so often that you simply get used to them being noisy or having to be pushed back in?
...you were ill, and it took seven years to receive an initial diagnosis, and four more years to begin receiving comorbid diagnoses and proper treatment for your illness, but you know you'll never be cured?
...even after years of doctor visits and a few psychiatric evaluations that prove all of this is not in your head, doctors often refuse to think outside the box for your illnesses, continue to question your suggestions (even from EDS specialists), and are quick to put down your experiences?
...turning around quickly could mean a speedy visit to the floor or nearest wall or chair?
...your heart rate felt like fluttering butterflies or pounding elephants at any given time, and the fluctuations wore you out?
...always using a wheelchair and having a continually diminishing quality of life was in your near future?
...working forty hours a week wears out your body so much that you can't shower yourself or button your own blouse?
...you are no longer physically capable of doing all of the things that you used to do, let alone would currently enjoy doing?
...your skin is so dry, thin, itchy, and sensitive that you don't use soap or shampoo in the shower? (Don't wrinkle your nose yet, there are other options- it's taken a lot of trial and error to figure it out, though.)
...achieving the highest quality of life meant taking lots of pills and having an extremely restrictive diet, as well as maintaining a delicate sleep schedule and getting enough rest at home between outings? Planning your showers and getting dressed is a way of life, but is worth it!
...you felt pressure from the way you are treated by the medical community and people in general to wear a 'mask' of wellness to be perceived and accepted as normal as possible?
...you were in so much physical pain on a daily basis that if someone were to wake up in that amount of pain, they'd have to go the ER, but we learn ways to live with it?
Though this isn't a complete list of everything that happens each day in an EDS body, I hope it gives a general idea as to what life is like for us and makes invisible illness more relatable and understood. If this was your life, would you choose to leave the house, or hole up in bed (or any combination of both?) It's a revolving question that can change on a daily basis, and have consequences that we don't always foresee. Others must have IV's daily or feeding tubes, which greatly effects the decision to leave the comfort their homes and need to rely on others for support and help. At the very least, I hope this keeps you from judging what you see on the outside when you notice someone walking to the store from a handicapped spot or reaching for an item while standing up from a wheelchair.
Have a safe and happy New Year's celebration, and I hope the 'what ifs' in your life are thought provoking as well as inspiring!
