Why We Need to Change Our Expectations When it Comes to Illness

As a child, I was taught that certain things become expectations as we grow older. Things we learn to take for granted.

Things like when you go to the doctor the expectation is that they will cure you with medication or a procedure. Everyone with that illness will be treated the same way and generally with the same medication. When you have Elhers-Danlos syndrome, post orthostatic tachycardia syndrome, mast cell activation disorder, or a slew of any other chronic conditions, that’s not the case.

I think our expectations have to change, that they need to be adjusted to fit our circumstance. The truth is that chronic conditions such as these will not be cured in most cases. They will be managed, but being managed is not a cure. Not everyone with these conditions will be treated the same. Not everyone will get the same medication. Not everyone will respond to the treatment the same. Not everyone will have the same experience with the same doctor. There is no rhyme or reason for this. Perhaps it’s personality, perhaps it’s just an off day for the doctor or the patient. We really don’t know.

Since there is no cure, I believe we have to think of what we expect from the visit. That’s a hard thing to do. What we want is a cure and many of us can’t have it. So adjust. Really think of what you want. Do you want to be able to accomplish more during a typical day? A medication with less side effects? Less pain?

What are you willing to give up to get your expectations? Are you willing to do less but feel less pain? Are you willing to endure more pain to accomplish more? Are you willing to make radical changes to your diet? To your lifestyle?

It’s all about adjusting your expectations. Adjusting your expectations allows you to have some peace of mind, and some control. Sometimes by not adjusting your expectations, that leads to frustration, depression and a fear and distrust of doctors and medicine.

So, I advice that we all adjust our expectations and live the life we’ve been given.

We want to hear your story. Become a Mighty contributor here.

Thinkstock Image By: fona2

Find this story helpful? Share it with someone you care about.

Related to Ehlers-Danlos Syndrome

two women chatting in a cafe over coffee

Why I Say 'Yes' to Events Even Though Chronic Illness Means My Answer Is 'No'

I do it. I’m excited, and slightly embarrassed I wore my hole-ridden sweats and my slippers, as I meet up with an old friend at the grocery store. Before we know it, a firm date has been scheduled and the word “yes” comes out instead of no. Deep down inside I know I can’t go to Megan’s Skin [...]
daily to do task list

When Chronic Illness Makes Having a Schedule a Luxury

I used to follow a pretty rigid schedule when I worked full-time, cared for my kids and attended college at night, in my own home. I was able to write events on a calendar and attend them, as planned. Ah, that was quite the luxury. I just didn’t know it yet. I didn’t know that one day I [...]
The writer standing in a field of flowers, with her wheelchair in front of her.

8 Basic Things Healthy People Take for Granted

I have hypermobile Ehlers-Danlos syndrome, which is a genetic connective tissue disorder. It often leads to a ton of secondary problems. For those who are healthy and carefree, you take so many things for granted that I can’t anymore. Here are a few. 1. Breathing. Now, isn’t that a given? We live, thus we breathe [...]

Choosing to See the Good in Life With Ehlers-Danlos Syndrome

Being sick is rough. It is all day, every single day. Sure, some days are better than others. I even have brief moments where I temporarily almost forget I’m sick. Then, inevitably, reality hits with a vengeance. I have one child who doesn’t have Ehlers-Danlos syndrome and one child who does. Duty calls. If I have a [...]