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6 Ways to Be Heard If You Live With Chronic Illness

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Some days are worse than others. Some days it is a trial just to get out of bed in the morning, but still I manage to roll out and attempt my day. Through these days, I load up on vitamin B and caffeine, and most days it still isn’t enough. I’ve tried exercise to see if I can raise my endurance and some days, it still isn’t enough. I sit at work, stare at the clock, and long for my comfortable bed. It’s almost too painful to be awake. Most physicians and people do not understand this. Especially when they see us out in the world and there doesn’t appear to be anything wrong.

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Just a hint of a facial expression that just barely lets people know that something may be wrong. Doctors seem to go to what is easiest in many cases. They try to adjust your vitamins or diet right before they accuse you of “faking it”’ or exacerbating your symptoms. That is unless you have found a compassionate practitioner – which as unbelievable as it sounds, I’ve managed to assemble a very compassionate medical team (although it took many years of trial and error and research).

So, how do you make yourself be heard?

1. Preparation!

Make sure you have your medical records along with any personal research you’ve done and bring the in the information you’ve collected (testing, symptoms, etc.).

2. Help the physician connect the dots!

You want to have made these connections prior to your appointment. What do you know about the condition that you want your physician to research? What connections have you made? Example: joint dislocations in connection with Ehlers-Danlos syndrome (EDS) or symptoms of chronic fatigue, such as loss of memory, excessive exhaustion after physical or mental stressors.

If you find that your doctor is unresponsive to your needs, then you will need to likely go for a second opinion. A good medical team listens and responds. After all, it’s your insurance and funds that support the profession, so in essence they work for their patients. Ensure that you are a good patient as well. Always remain professional no matter what the irritant.

Remember that you are your best advocate!

A picture of the write with medical equipment taped to her nose.

3. Don’t give up!

This journey may be exhausting, but you are deserving of answers and treatments. People or physicians may make you feel detached or burdensome. Ignore that! Find your strength that is buried deep down under the rubble and pull it out of your reserves. Find things that encourage you like music or art. Anything that keeps your mind active and sharp, and never forget that you are stronger than you know. You have come this far, even if you are scraped, bruised and bleeding. You are here. Right now, in this moment, and so long as your living there is opportunity to move forward.

So, how can you cope with EDS and Chronic Fatigue Syndrome?

1. Give yourself some credit!

Did you wake up? Did you do what you could within your limitations? Then you are doing all that you can and that is all anyone can do.

2. Ensure that you listen to your body.

If you need to rest…rest. Take a load off and listen to the signals your body is telling you. If you choose to ignore the signs, then you will likely have to deal with the consequences.

3. Find things to occupy your mind!

Whether it is reading, art, or even meditation – do it, even if you can do nothing else that day. Or if all you can do is sleep, allow your body the time to do that.

4. Ensure that you are taking vitamin supplements or medications, if suggested by your physician.

Remember that you cannot hope to be better if you don’t follow the suggested treatment plan. What if the treatment isn’t working? Ensure that you keep a journal of your progress and then present it to your physician for review. Remember that medications may need to be changed or dosages need to be adjusted to begin to see any benefit.

5. Find ways to hold on to hope!

Whether it is your belief in yourself, and/or the presence of good friends or family. Maybe it is your faith in a higher power, and maybe it would just be faith that modern medicine will catch up to help you. Hope is essential to staying afloat on this journey.

6. Take one day at a time!

Every day is a new opportunity. You only loose out, if you stop trying.

We all have a different and unique journey that we are on, and sometimes you may feel you are helpless against the circumstance. Sometimes people and physicians just don’t get it. Who can really understand your journey better than you? Sometimes it is up to us to lend that information to those around us, and to spread awareness so that someday there is more understanding and compassion in the world around us. Never let go, and never give up.

Getty Image by Rawpixel

Originally published: June 9, 2018
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