In a perfect world, friends and family (and the general public) would understand everything. But that’s unrealistic.
The Top 5 Things I wish People Understood:
1. EDS is LIFELONG
EDS is a genetic condition. I was born with it. It is chronic and progressive. It is not going away. I won’t wake up tomorrow and be better. Surgery isn’t a cure. Physical therapy isn’t a cure. Bracing and splinting is really just a band-aid. There is no medication that will fix this. There is NO cure. The concept of chronic and progressive illnesses seems to baffle people. They really struggle with the idea that there are health conditions that exist without a starting point and an end.
2. Disability and Chronic Illness Do Not Discriminate Based on Age
I realize I am young but that does not mean I am "too young" to be sick. There are so many conditions out there. Some are specific to childhood. Others occur in our young-adult years. There are conditions seen almost entirely in adult and geriatric populations. And of course, there are genetic disorders; lifelong conditions that people are born with. Disability and chronic illness do not discriminate. While it is upsetting to people to think of children and young adults dealing with health challenges, there is no age limit when it comes to disability and chronic illness.
3. Don't Judge What You Don't Know
Many chronic illnesses are invisible. Just because someone looks perfectly healthy on the outside, does not mean that they are. Just because someone put makeup on, got dressed, and "looks" good to you does not mean that they feel "good." There are rarely any days that I feel "good."
For the most part my disability is visible because I use crutches and/or a wheelchair and I wear several different braces that unfortunately are almost always visible. I also wear a mask in certain situations. However, if you took those mobility devices and masks away, most of my conditions are actually invisible. I have autonomic dysfunction. My autonomic nervous system does not function properly and because of that simply standing up is like running a marathon for my body. But you can't see that (unless I faint). I have headaches and neurological symptoms everyday. But you can't see that. I live with an average pain score of 6/10 every single day. But you can't see that (unless my pain is 7-10/10 on that day and then maybe it will show on my face). My stomach barely tolerates food. But you can't see that. Several of the joints that are not currently braced still dislocate everyday. But you can't see that (unless you are the one that caused the dislocation).
Just because you can't see something...does not mean that the person is healthy. It does not mean that they feel "good." It does not mean that they are somehow "better." They are probably just really good at hiding their symptoms (which for me are present every second of everyday).
Just because someone shares their symptoms with you, does not mean that they are being negative. If someone asks me how my health is or how I feel, and they genuinely want to know (close friends and/or family), I will tell them (honestly) how I am doing. Honesty does not mean negativity. A positive attitude is wonderful but it is not possible for someone with debilitating chronic illness to be sunshine and rainbows every day. That does not mean the person is negative.
Note: sharing symptoms also does not always mean the person is seeking attention...
When someone asks me how I am doing, and I don't want to get into the details I usually say "I am alive...so that's good." And while I am a bit sarcastic when I say that, it's true. I am alive...and that's good. It's my way of saying, "I wish I had more good news but lately I do not and I don't want to bore you with all of the details."
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| Sarcasm...keeping a positive mindset is still very important! |
5. If I could work I would...
People with chronic illness/disability who cannot work are not "lazy" and they are not on "vacation." I often joke that I should get paid to be a patient because it is a full-time job when you have complex health issues. There is nothing I would rather do more than work. I am a Registered Nurse. I worked hard for my license. I have always been an independent person. I want to be able to support myself and contribute to society in a meaningful way. I am not sure that I will ever reach a point where I can manage a consistent job. My health is far too unpredictable. But trust me, if I could work I would...and if that day comes, I won't take it for granted. I would love it!
There are so many things I wish people understood. It is not possible to cover them all. It is also not realistic for me to expect people to understand what it is like to live with chronic, unpredictable, progressive illnesses. That is something that you only truly understand when you are living it. I am blessed with family and friends who want to understand and for that I am forever grateful. Not everyone is as lucky to be surrounded by a wonderful support system.
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