I suffer from POTS, which is a condition that affects my nervous system in many ways. October is Dysautonomia Awareness Month, so I'm writing up a list of things that people with chronic illness will understand--and will hopefully help those who don't know much about dysautonomic illnesses.
1. You learn to appreciate the little things in life.
Things as simple as waking up in the morning, not have your heart race abnormally fast on a leisurely walk, or fall asleep at night without trouble are all wonderful to you.
2. The Spoon Theory
The Spoon Theory explains how much energy simple tasks take up for people with chronic illness. People with chronic illness generally take much more energy to complete simple tasks, like getting out of bed every morning. Which goes back to point #1 and just why doing something so normal for everyone else can be marvelous for someone with a chronic illness.
3. Our fatigue is different than lack of sleep.
We are tired because our symptoms make us very tired. When my fatigue is bad, I can barely keep my head up during the day, even with ten hours of sleep the night before.
4. We may look healthy, but that is not the case internally.
With many chronic illnesses like POTS, people look like they are healthy. They seem to function in many ways because they try very hard, but they often still struggle. POTS patient's nervous systems are often not working properly even if everything looks fine on the outside.
5. What you can do to help is be there for us.
It is extremely helpful to have friends who are there for us when times are hard with anything in life. Try to be there for your friends and support them. Listen to them if they need to vent or rant because it provides comfort for them
6. If we say no, it's probably because we need a break.
Our illnesses, take up a lot of time and energy. As much as we love our friends, we may need a break more than the average person to have some sanity.
7. Our illness probably will never go away and we have accepted that.
Chronic illnesses have the word "chronic" in them for a reason. Chronic means for a long time. As we deal with our illness, we learn to deal with them (somewhat) and it becomes the new normal. We understand this might be for life.
8. Talking about the future is scary.
People with chronic illnesses have big dreams and aspirations, but may need to take a different path to get there. A major dream is college. Often, a four-year college may not be right for someone with a chronic illness and community college may be a better option. We also take longer to graduate due to our health issues.
9. Our energy levels are different than yours.
People with chronic illness generally have lower energy levels, and some days are definitely worse than others. Keep this in mind when a friend says no when you ask them to go to a movie or get dinner.
10. Life is precious, enjoy and appreciate it.
When you have dealt with a chronic illness for at least a year, you realize that life is precious and how most people take waking up in the morning for granted. Remember to be grateful all the little things like waking up, getting dressed, and getting to school.
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