Living with Pain, Misunderstood and Ignored

chronic pain misunderstood

Chronic pain is often misunderstood by our friends and family. Personally, I am thankful that those closest to me have not experienced the pain that I have been living with since 2001. What is most frustrating is when it is misunderstood and ignored by our healthcare providers.

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Types of Pain Misunderstood

A person with only one chronic pain source will not understand the complexity of living with more than one. For example, someone who only suffers from a bad knee may experience complete relief with an amazing pain management plan. Whereas someone with multiple chronic pain illnesses will never, no matter how fabulous their pain relief treatments are, ever be 100% pain-free.

How we function with each pain differs as well. I can work around a pain that affects my knee. Chronic knee pain does not interfere with my cognitive abilities. On the flip side, it is impossible to fight the mental and physical fatigue when experiencing pain and swelling around my upper spine, neck, and skull.

It is not unusual for someone to experience pain from multiple chronic illnesses

Some chronic pains come in waves. The intensity ebbs and flows, but is always present. Other pains take breaks. The pain I experience from endometriosis is, or at least used to be one of those. In my younger years, the only time I would experience pain is whenever an ovarian cyst would burst. It went on hiatus after the birth of my first child but returned with a vengeance after my second. After a botched hysterectomy, the longest amount of time I have experienced relief from endo is one year and the shortest being three weeks. My last endo flare began at the end of July 2018 and has yet to stop.

There are no cures for our chronic conditions. Sometimes we get lucky and find something that significantly reduces one or more of our pain sources. But even then, we are still not 100% pain-free. PEMF therapy is my weapon of choice when it comes to pain caused by inflammation fibromyalgia and psoriatic disease. However, there is nothing I can do about the adhesions from endometriosis and surgical scarring. Because of medical negligence, the mess inside of me can never be undone.

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Precautions aren’t Optional

Nobody enjoys having to stay home. Nor do people like having to distance themselves from others. And yes, masks are uncomfortable.

For many, this way of living feels uncomfortable and restrictive. What they don’t realize is that this is quite normal for a lot of the chronically ill.

Whether an illness or its medication is to blame, many of the chronically ill have compromised immune systems. Taking precautions to protect their health is a way of life. For these people, what may be a common cold to others can turn deadly in an instant.

Having a chronic illness requires taking precautions all of the time, not just during a pandemic

The pandemic hasn’t changed our lives in the same manner that it has our healthy friends and family members. Staying home to avoid becoming sick or because of illness is our norm. For example, if I have a lunch planned on Wednesday and patient advocacy event on Saturday, lunch will be canceled if I feel worn down or find out that the person I planned to meet had or was getting over a cold.

Masks, while uncomfortable and yes, annoying, provide a layer of protection when we have to spend time in crowded places. The person next to you on a plane isn’t wearing a mask for attention. They just want to make it to their destination without getting sick.

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Pain that is Misunderstood is also Ignored

The frightening truth of living with a chronic pain diagnosis is that it makes receiving a proper diagnosis for other health issues difficult. This can be the fault of medical professionals and/or the patient themselves.

Had I mentioned the extreme levels of fatigue and joint pain I was experiencing to the doctor who diagnosed me with psoriasis, I would have received my diagnosis of psoriatic arthritis two years earlier. Not knowing that those symptoms were related to this illness and being embarrassed to admit how tired I was, I failed to address them with my physician.

SYMPTOMS THAT OVERLAP WITH OTHER CONDITIONS ARE OFTEN IGNORED BY DOCTORS

I wasn’t the only one who didn’t understand that psoriasis was more than a rash or that it could wreak havoc on my body whether I had a visible rash or not. My doctor didn’t understand this disease either. If he had, it wouldn’t have taken my body being covered head to toe before he even considered a diagnosis of psoriasis.

Many patients experience overlapping symptoms. Fibromyalgia can cause abdominal and bladder pain. But so can endometriosis. Joint inflammation is a symptom of psoriatic arthritis, fibromyalgia, and psoriasis.

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Each chronic illness comes with a long list of symptoms. With many overlapping symptoms, it is common to be misdiagnosed and have other serious health issues ignored. My fibromyalgia diagnosis gave twenty surgeons no reason to take the pain I experienced after my hysterectomy seriously. I firmly believe that without a fibromyalgia diagnosis, my botched hysterectomy would have been discovered sooner, giving less time for more damage to occur.

What part of chronic pain do you feel people most misunderstand?

Has one or more of your chronic pains been the reason for another health issue to be ignored?

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2 thoughts on “Living with Pain, Misunderstood and Ignored

  1. I totally get you, especially when you go to the GP or A&E and they put everything down to my main diagnosis. It’s really tough when symptoms over lap, for us and for our care givers.

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