Health Care Frustrations – How You Can Help

So you’re sick. You’re feeling miserable, and your body is in so much pain that you think you might be dying.

What do you do?

If you’re like me, you’re thinking the ER might be your last hope. Of course, nobody ever wants to resort to going to the hospital, but when you’ve tried everything, and nothing is working, what choice do you have?

Except, say you get there, and there’s nothing they can do. Let’s say you wait for hours in the ER, go through the hoops of IV’s and questions only to be told nothing is wrong with you – only to go home in the same exact amount of pain and sickness you were already in.

Now what do you do?

For many living with a chronic illness, especially the rare diseases and invisible illnesses, this is a constant battle.

And it is also one of the scariest things about becoming sick – realizing doctors don’t have all the answers after all.

For most illnesses or infirmities that come along, we can rest assured that seeking medical help will relieve what we are going through. They will be able to easily tell you what’s wrong, they will give you something for it, and you will be free to go home. They’re doctors after all.

But with all due to respect to the time and effort these doctors put in, it is important to realize that the medical world is still in need of very much help and research.

So what can you do to help?

Speak up!

If something is wrong, let it be known. Do not feel ashamed, and do not feel stupid.

Yes, I felt completely foolish telling my neurologist that being active with my “migraine” actually made it feel better and resting made it worse. But it was this bizarre symptom that gave my doctor the direction they needed to find out what was wrong.

Do not be embarrassed. They see it all, they hear it all. Little you say, if anything, will phase them. They went into this profession knowing what all it would entail, and they still choose to continue it. You describing a personal symptom in graphic detail is not going to make them quit their job, nor will it make them think any less of you.

And be honest. Who cares if you sound like a hypochondriac. You know your body, and if you continue to honestly describe exactly what is going on, they will have no choice but to continue to look for an answer.

Bonus Tip: To assist your caregivers even more and avoid misunderstandings, try to keep a journal of your symptoms and patterns. Have your list and questions ready at your appointments.

Be Your Own PCP

You are your primary care provider (figuratively speaking of course). It is your duty to make sure you are satisfied with the care team under you.

No, they may not have the answer or the cure yet, but are they doing all they can to find it? Are they taking the time to make sure you are as comfortable as they can make you? Are they showing compassion to your needs and actually listening before acting?

There is nothing wrong with reporting a nurse or doctor that has been inefficient or disrespectful in their care. In fact, it may be equally as important as promoting our good caregivers. But please, keep it professional.

And remember, you have the freedom to change your healthcare providers. Don’t settle.

Spread Awareness

Sometimes your healthcare team really is doing all they can do. Sometimes science just hasn’t caught up yet. (Or the joys of insurance have gotten in the way).

But you can still help!

From the very beginning of becoming sick, I made sure to let every nurse, doctor, and receptionist know what happened to me. I wanted the world to know what possibilities could occur when you tamper with the central nervous system.

But this wasn’t to scare anyone. This was to make it known what could happen so that people could start looking into how to prevent it. This was to educate people!

With the world being in the palm of our hands, it’s easier than ever to spread awareness for the areas in the medical field that still need help.

With enough people speaking up and joining together, patterns will develop. These answers will eventually lead to the cure and prevention.

If everyone stayed quiet, these conditions might as well not exist at all.

Be Mindful

One of the best pieces of advice my neurologist has ever given me was to be mindful.

When I first started to meet people who had my condition, he saw my excitement to share stories and compare notes. He cautioned however to be mindful of what all was said.

There tends to be so much fear and anxiety stemming from the medical world. Google a cough, and results show that you’re dying. This is not the type of awareness we want to spread.

In sharing your story and experiences, it is important not to spread this spirit of fear. Share what works for you and what doesn’t. Always keep in mind that every body is different. After all, it is this very thought that we want the medical field to remember with the hopes that they will always strive to think outside of the box.

While I know firsthand how difficult it can be, we must learn to balance our patience and persistence with the medical field. We’re not trying to knock them down. We’re trying to help them. And in return, one day, they will help us.