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LOST IN CHAOS: The State of Chronic Pain in 2016

An Epiphany

 
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The Hidden World of Invisible Suffering

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By Suzan L. Jackson • www.ProHealth.com • December 16, 2016


The Hidden World of Invisible Suffering
By Suzan L. Jackson

When I first became sick with ME/CFS almost 15 years ago, it was like a curtain was pulled back on a hidden world I never before knew existed. One of the most important things my years of chronic illness have taught me is that everyone has their own challenges, and they are often invisible to those around them. Over the years, I have been surprised again and again to discover that people around me – both new acquaintances and old friends – have their own challenges to deal with behind the scenes. Recognizing this hidden world of invisible suffering has enriched my life, making me a more empathetic and compassionate person, and improving my personal relationships.

I recently learned that an old sorority friend has had lupus since we were in college together; I never knew she was hiding a complex, serious chronic illness. Another old college friend reached out to me when I published an article titled What To Do When a Loved One Becomes Chronically Ill. She explained that her mother had terminal cancer and thanked me for writing the article, saying that it really hit home for her and expressed her own feelings about what her family needed. I lost my own father to cancer last year, so I was especially moved to find out what she was going through.

Many years ago, I was sitting on the sidelines of a soccer field, watching my younger son play for his middle-school team, with my older son (who also has ME/CFS plus three tick infections) sitting next to me. I was feeling isolated – and a bit sorry for myself – because most of the other parents were standing in a group, talking and laughing, as they always did. I struck up a conversation with another mom sitting, like me, in a low chair nearby.

As we talked, we discovered that we both had chronic illnesses, and her daughter was sick, as well. She had fibromyalgia and her daughter had been diagnosed with both fibro and lupus, but she was concerned she had Lyme. We discussed the challenges of Lyme disease in our area, treatments that had helped each of us, the latest research, and more. Just like that, a bond was formed, and we talked for the rest of the game like old friends. It was like saying a code word and finding out we were both in the same secret club!

Things like this have happened to me over and over again since I first began living with chronic illness. With invisible illnesses, we often feel as if we are all alone and no one understands us, but there is a whole hidden world out there of people just like us. You never know – the person sitting next to you at a school function or driving in front of you or sitting in your doctor’s waiting room might have a similar illness.

It’s not just that there are others with chronic illnesses, though. There are plenty of people who are perfectly healthy but are dealing with their own serious challenges behind the scenes – perhaps their child has severe learning disabilities or a loved one is battling cancer or their marriage is falling apart. Once you recognize that everyone has his or her own challenges, this hidden world of suffering is revealed. This understanding has helped me to become less self-absorbed about my own problems and to develop more compassion for other people.

Here’s how you can tune in to this hidden world of invisible suffering and enrich your life and relationships:

Be Open & Honest about Your Challenges – This comes naturally to me, but is very difficult for some people. If you are used to hiding your illness or pretending everything is fine, first practice being more open and honest with your closest friends and family…without self-pity. Your attitude will usually set the tone for your loved ones to follow, so let them know when you have to sit down (or lie down) or why you can’t do something they are proposing. A matter-of-fact approach usually works best: “ I would love to take a walk, but unfortunately, my illness limits my stamina; walking today would make me sicker tomorrow.” When an acquaintance asks why you’re not standing up with the crowd, explain simply, “I have a chronic illness and can’t stand for long.” Often, your openness will open the door for others to share their challenges, as well.

Recognize & Respect That Everyone Has Their Own Challenges - Your honesty will often encourage others to be honest. Be open to discovering other people’s challenges. When people do tell you about what’s going on in their lives, be an active and engaged listener. Set aside any resentments or self-pity and truly listen.

It’s Not a Contest – Don’t compare challenges! This is probably the most important point (and one I need to keep working on constantly). When you suffer from serious illnesses that severely limit your life, it is easy to feel resentment or bitterness when someone else tells you about his or her challenge, which might seem like nothing to you compared with yours. Reject that inclination and dig deep for empathy. Listen attentively and offer compassion when someone else shares a challenge with you – it will enrich your relationships and help you feel less isolated.

Offer Empathy and Compassion - When you find out that someone else is suffering, let him or her know that you understand and that you care. They need the same kinds of reassurances and compassion that we do. Simple phrases like “I’m so sorry you are going through this” or “I’m thinking of you” can mean a lot. Just consider what you wish people would say to you.

Recognizing that everyone around you is dealing with their own hidden suffering, just like you are, can open up your world to greater compassion and closer relationships. It can take some practice – especially learning not to compare others’ challenges with your own – but the rewards are great. Listening respectfully to someone else’s challenges that are different than yours can enrich your relationships. In giving more empathy and compassion to other people, you will get more back in return.


Suzan Jackson, a frequent ProHealth contributor, is a freelance writer who has had ME/CFS for 13 years. Both of her sons also got ME/CFS, but one is now fully recovered after 10 years of illness and the other is in college, also dealing with three tick infections. She writes two blogs: Learning to Live with ME/CFS (with an emphasis on LIVE!) at http://livewithcfs.blogspot.com and Book By Book at http://bookbybook.blogspot.com. You can follow Sue on Twitter at @livewithmecfs.



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