How to advocate for yourself when you have a chronic condition

How to advocate for yourself when you have a chronic condition

Sometimes you need to change the way you do things

Here we are in the second week of January already. I’m sure that many of you made the ubiquitous New Years Resolution. This time around I didn’t make any. I simply decided to push on with my goals from last year. What is it about a New Year and new beginnings that makes people go commitment crazy? I was also someone who used to say things like: “I’m starting my new diet/exercise plan on Monday” or I’m giving up alcohol after such and such a time.

Living with chronic pain and fatigue has changed my mindset on this. The best time to start something I decide on? Right then and there. I’m more of a spur of the moment kind of gal. I don’t like making plans ahead of time. It inevitably ends up with me needing to convince myself to play through the pain when the time comes. I have to do that every day as it is. When I’m having a good day I grab the opportunity with both hands because I know when it’s not such a good day it will be a different story altogether.

Approaching the end of last year I told myself that I would not go into another year without knowing what was wrong. I had spent too many years not knowing and have given up too many things that I loved doing because I just couldn’t spend quality time with my daughter, work full time and still be expected to do things like going for a hike in the mountains. It was just too much. I needed to prioritize and my family came first.

To summarise the last few years. I’ve been for MRI’s, x-rays, ultrasounds and so many blood tests I’m surprised that pathology can still find a vein. I’ve seen specialists and general practitioners. I spent a fortune in my attempt to find out what was wrong.   That’s not the worst part.  I also simply accepted what was said without questioning anything.  All that it got me was worsening symptoms and some new ones.

The time came to advocate for myself and make sure that I was heard. We so often feel embarrassed or too shy to persist in getting answers. It’s time to stop this negative behaviour. These shorts steps should help you learn how to advocate for yourself.

How to advocate for yourself when you have a chronic condition:

Know that you are entitled to proper medical care.

The question is what that means.  Here is a short definition of what proper medical care entails – Health care or healthcare is the maintenance or improvement of health via the prevention, diagnosis, and treatment of disease, illness, injury, and other physical and mental impairments in human beings.

So many people with chronic pain simply learn to accept what they consider their lot in life.  This probably happens after seeking help from a doctor and ending up back at square one.  You deserve to be seen by a doctor who gives you the care you need and require.   I can’t count the number of times when I saw a doctor regarding my pain levels and left without even a physical exam to determine what was causing the pain.

Be clear and detailed about the symptoms you are experiencing.

Be prepared when you go to your doctor appointment.  I found that making a list of everything that I was struggling with helped.  Write down what medication you have used, being sure to note down what provided relief and what wasn’t effective. If you suspect something specific, say so.

Stand your ground.

Ask questions and if you are not 100% happy with the answer push further. Get a second opinion or a tenth. Carry on until you get the answer that you need. I requested blood tests to rule out other possibilities. After years of struggling with high levels of pain, I was tired of playing the guessing game. Also if a medication does not work, don’t let the doctor prescribe it again. Insist on a finding an alternative that works. I was prescribed Lyrica several times despite explaining to the doctor that it had not provided any relief. I was told ‘let’s just try it again ok?’ No, it’s not ok. I don’t want to take pills for the sake of taking them. There are too many pain medications that provided zero relief.

Persist until you find your resolution

Don’t let anyone tell you that you are being over-dramatic or a hypochondriac.  You deserve to know what is going on with your body.  Being in pain around the clock is not a joke.  Having a diagnosis gives you a fighting chance.

I hope that this helps you learn how to advocate for yourself during your doctors visits.

Remember to support others on their journey as well.  A unified voice is a strong one which will be heard.

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