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The last health taboo – how can we support those in chronic pain?

Updated: Jan 3

I saw on Instagram that she went to Spain last week with her family. This summer she’s doing an internship too. What’s more, this whole year she’s been going out to society events and parties. Clearly, she’s fine. Yet, now she’s just sent me a text cancelling our plans at the last minute, saying she feels unwell; that she ‘suffers from chronic pain’. I was disappointed, but I decided not to dwell on it. Instead, I sent her a ‘get well soon’ text and didn’t mention it the next time we met up.


Although a ‘get well soon’ message is usually a safe bet when responding to someone’s bad news, if the word ‘chronic’ is involved, it’s probably time to dig a bit deeper. Of course, there is no perfect way to respond when someone tells you about their chronic illness. That being said, there are definitely some pretty horrendous responses to avoid. Perhaps the worst response would be: “But you don’t look ill.” Many diseases get dismissed in this way because they’re uncommon and show no symptoms on the outside. Yet, these ‘invisible illnesses’ that cause chronic pain can operate just as painfully as visible ones. You will never be able to judge the severity of someone's illness based on what you have observed; it runs much, much deeper than you could possibly imagine.


Since it isn’t talked about nearly enough, let’s be clear: an illness is classified as chronic if it lasts for around three months or more, is persistent, and has no cure. Although medication can reduce and manage pain, living with a chronic illness can be very harrowing. Despite the fact that approximately one in three of all adults suffers from multiple chronic conditions, most people still feel unequipped to respond to revelations of chronic pain.


It’s difficult to convey the impact a chronic disease can have without telling someone’s story. Emma, who has lived with Behcet’s disease for over two decades, kindly agreed to do an interview for TEDXWarwick. Behcet’s disease causes chronic inflammation, or swelling, in the body's blood vessels. Emma first experienced symptoms aged 20. “It felt like a really bad flu, my throat was sore and I felt extremely fatigued all the time”, she says.


Like most people with a chronic condition, she experiences episodes where her symptoms are severe (flare-ups or relapses), followed by periods where the symptoms disappear (remission). Because she was able to function normally in between flare-ups, people dismissed her condition as Emma being a ‘sickly person’, some even calling her a hypochondriac.


The reality is that this illness had a massive effect on Emma’s 20s and early 30s. Besides the pain that Emma had to endure, her misdiagnosis had a detrimental effect on other aspects of her life too.


At the age of 21, she was misdiagnosed with Herpes simplex virus, which is a sexually transmitted disease. Consequently, Emma and her long–term boyfriend thought the other had cheated. “I wish I could go back and tell him neither of us had been disloyal and it was actually Behcet’s that I was suffering with” Emma says. Sadly, the couple had no clue about her misdiagnosis and broke up as a result.


Additionally, she ended up missing her last exam for her master’s because she felt so ill that she had to rush to the hospital. Then later in life, her workplace wouldn’t make allowances for her during flare-ups without more ‘proof’ of her pain. Even after getting diagnosed, Emma tackles new obstacles such as the difficulty of getting life insurance because of the risks associated with the disease.


It was due to an incredibly bad flare-up that Emma was correctly diagnosed. Pregnant with her first child, she was experiencing one of her worst flare–ups ever. She was in so much pain that she had to be catheterised. Afterwards, she went to an STD clinic and by a stroke of luck she was seen by a consultant who was able to identify that she had Behcet’s disease. After believing she had Herpes for over a decade, she was finally correctly diagnosed. This moment was life-changing.


After a diagnosis, Emma could understand her illness and take measures to manage it. Equally, people started believing Emma when she said she felt ill. “People didn’t understand before, but with a diagnosis, it’s like a piece of evidence that others use to determine that my feelings are valid”, she says.


The few people who didn’t need this ‘piece of evidence’ to acknowledge her pain throughout her medical journey were fundamental in helping Emma live her life to its fullest. This highlights how important it is for friends, family members and colleagues to take chronic pain seriously. “I got through it because of the support network I had around me”, Emma says.


Emma admitted, “Sometimes I still feel embarrassed to tell people about my disease because I fear how they will react; I fear their ignorance.” Emma then went on to say that “just knowing that there are people who will be there for me, who acknowledge that it’s ongoing, are those who make a difference to my quality of life.” It’s clear that, with a likely history of complications and misdiagnoses, validation from anyone can provide much-needed support.


If you already know someone with a chronic condition, you can show you care by asking them about their illness and symptoms. Of course, if you are too inquisitive it may come off as prying. Nonetheless, if they mention it, don’t try to swiftly change the topic of conversation because you feel uncomfortable. Instead, try to get an understanding of what the person is going through and let them be the one to move the conversation on.


It’s likely that the person affected by a chronic illness doesn’t want it to define them. They may feel forced to tell you because they are experiencing painful symptoms at that moment in time. If that’s the case, ask how you can help. Otherwise, you could take it upon yourself to research what the symptoms of the disease are or how it manifests itself. This will make it easier for you to empathise and allow you to know how to help, without putting the responsibility of having to explain their disease on the person living with it. If you give someone’s illness the weight it deserves, they will be eternally grateful for your support.



 

Written by Kate Johns


The views and opinions presented in this article belong to Kate Johns — not TEDxWarwick.


If you have any questions concerning the article, its research, and opinions expressed, do feel free to comment in the comments section, or email publications@tedxwarwick.com


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