Chronic Fatigue Syndrome Patients Feel Increasingly Isolated

Source: Female First, 20 September 2013

By Taryn Davies

Sufferers of Chronic Fatigue Syndrome (CFS) are feeling increasingly isolated due to their family and friends’ lack of understanding of their condition, a study has revealed.

The study, carried out by talkhealth, one of the UK’s leading online social Health communities, revealed that a massive 70 per cent of CFS sufferers felt that their family and friends did not understand their condition and appreciate the effect it had on their lives.

Furthermore, nearly half of the respondents felt that their condition had not been taken seriously by a medical professional, adding to their feelings of isolation.

The study showed that the top five most common symptoms experienced by CFS sufferers are tiredness after exertion, un-refreshing sleep, muscle and joint pain, chronic physical exhaustion and cognitive difficulties such as memory loss.

Dr Jon Rees, a spokesperson for talkhealth comments:

"Chronic fatigue syndrome is something I see surprisingly often as a GP. It is an extremely frustrating condition not only for patients who often feel that their problems are not taken seriously but also for relatives and friends who may struggle to understand a condition that has no outward signs of physical illness. Patients may also experience cynicism from some people in the medical profession including doctors, who do not recognise CFS as a true medical condition. However GPs are increasingly realising the true impact of the symptoms and are better equipped to offer support and onward referral to specialist services."

Dr Rees continues:

"It is vital that patients receive adequate support as CFS can have a huge impact on their quality of life. They must be fully assessed for any underlying cause that can be treated, such as underactive thyroid or coeliac disease but if no cause can be identified and the symptoms are significant, referral to a specialist chronic fatigue service can often be useful."

Chronic fatigue syndrome (CFS), affecting 250,000 people in the UK, causes persistent fatigue (exhaustion) that affects everyday life and doesn't go away with sleep or rest.

The condition is also known as ME, which stands for myalgic encephalomyelitis. Myalgia means muscle pain and encephalomyelitis means inflammation of the brain and spinal cord. Both CFS and ME are commonly used terms.

YOU ARE NOT ALONE

First published on ProHealth as "You Are Not Alone." 

One of the harshest punishments that CFS/ME inflicts upon its sufferers is isolation. Human beings are social animals, and we do poorly when placed in situations that remove us from contact with other people.

Isolation is not the same as loneliness. Loneliness is an emotional state, the result of feeling alone, even when other people are present. Isolation is a state of being prevented from interacting with other people. The distinction between the two terms may appear to be a fine point, but the crucial difference is that isolation is usually imposed upon us. 

Of course, there are those who voluntarily remove themselves from society, but these people – recluses – usually are content with their state of separation from the world. Why? Because they have chosen it. When people don’t choose to be isolated, when it is forced upon them by circumstances beyond their control, it is unbearable. This is why solitary confinement is the ultimate punishment for inmates in prisons. It puts people in a state of complete helplessness.

The Center for Constitutional Rights considers solitary confinement to be a form of torture – a violation of the Eighth Amendment’s prohibition of “cruel and unusual punishment.” Prisoners who are placed in solitary confinement, even for a few weeks, experience “increased anxiety, nervousness, headaches, nightmares, fatigue, obsessive ruminations, confused thought processes, mood swings, depression, memory lapses, confusion, problems with impulse control, paranoia, feelings of overall deterioration, and thoughts of suicide.” These prisoners, by and large, were healthy before being placed in solitary confinement. Imagine how this type of isolation would affect a population that is ill.

People with CFS/ME don’t have to imagine the consequences of solitary confinement on an ill population. Those who are severely ill experience the torture of solitary confinement on a daily basis. The four walls of a bedroom, for months, years on end, can feel exactly like a prison cell. In effect, it is no different from a prison. Whether your jailer is the judicial system, or the unpredictability of an illness, the result is the same.

Much like prisoners in a penitentiary, people with CFS/ME feel themselves to be stigmatized, rejected by society, ignored, dismissed, unable to fit in. Even among those who can get out and about, CFS/ME is profoundly isolating. The illness is their “dirty little secret,” something they can’t talk about for fear of being labeled as “defective.” When they do dare to bring up the topic, they inevitably become objects of misplaced advice (“You should work out!”), psychologizing (“Were you abused as a child?”), false sympathy (“I’m tired, too…”), and all the other well-intentioned but ultimately distressing comments that anyone with CFS/ME dreads having to respond to.  If you combine this social minefield with the physical limitations imposed by CFS/ME, and then add the very real fear that the illness will result in the loss of a job, or a spouse, or friends, the isolation becomes complete, for now it exists not just in daily life, but projects itself into the foreseeable future ... for all time.

Breaking the Chains of Isolation

According to Dan Moricoli, founder of the ME-CFS Knowledge Center, there are 24 million with CFS/ME worldwide. Other estimates place that number at a more conservative 17 million, but any way you measure it that’s a lot of people. It’s also cold comfort.  Simply knowing that a lot of other people have this illness can’t help you break out of solitary confinement - or can it?

The fact that so many people are experiencing – right this very moment –  exactly what you are going through is not a comfort unless you also realize that they, like you, are seeking break the bonds of isolation. They are tapping a code on the walls of their cells, hoping someone will answer. Tap back and you may find that with the right co-conspirators, you will be able to tunnel your way out of jail.

These are some of the ways people with CFS/ME have connected with one another.

Support groups: Back in the day when dinosaurs roamed the earth, support groups used to meet in person. There still are support groups that have regular face-to-face meetings. But there are also a slew of groups that meet online. How do you find one? You can simply type in the words “facebook” and “chronic fatigue” into a google search. Many support groups not only have Facebook pages, but websites. State and national CFS/ME organizations also keep lists. Find these organizations HERE.

Buddies: Having a buddy to talk can be a real lifesaver. A CFS/ME buddy is someone who is also ill, and who you can compare symptoms with (“I have this strange prickling feeling in my feet. Have you ever had that?”), who you can talk about treatments with (“Have you tried D-Ribose?”), who you can commiserate with (I’m having a bad day), or celebrate with (“I’m having a good day!”), and someone with whom you can simply feel as if you don’t have to keep up appearances. Just one person who really gets it can make a huge difference. (And that person could be you!) You can often find a buddy through a support group or meet-up. But sometimes they just appear, like ports in a storm. Once you start looking for friendship, it comes knocking.

Forums: There are several excellent, longstanding forums where people come to exchange ideas, talk about the latest news, chat, and generally feel welcomed into a community: ProHealth, Phoenix Rising, Hawkes’ Health Forum, Not Crazy, ME-CFS Community, and ME/CFS Forums are among the best. Forums are great because they are organized into topics, which allows you to focus on whatever area interests you.

Yahoo Groups: It is surprising how many yahoo groups there are for people with ME/CFS. If you do a google search on “Yahoo Groups” then, once you are in the directory, type in “chronic fatigue” or “Myalgic Encephalomyelitis” in the “Find a Yahoo Group” bar, dozens of groups will pop up. Many of these groups are local, that is they are meant for people who live in a specific city or region. Yahoo groups are not just a good way to connect with people, they keep you informed about the latest news in the CFS/ME community.  

Meet-ups:  Meet-ups are local social groups that share a common interest. Like old-fashioned support groups, meet-ups get together in person. There are 115 CFS/ME meet-ups in 8 countries. 

Blogs: ME/CFS Blogroll is a list of over 300 CFS/ME blogs started by Elisa, a longtime ME/CFS advocate. In her words, “It helps with the isolation - to "hear" all our voices and views and it gives me hope to find help... and to feel better, some day!” I couldn’t agree more. It is very liberating to read a blog post that expresses precisely how you feel. What’s more, you can always leave a comment, or start a blog yourself. Expression is a safety valve for the frustrations of “down time.”

Helplines: Many CFS/ME organizations provide helplines. These are usually staffed by volunteers and are meant to help people with CFS/ME find support groups, local physicians who may be receptive to patients with CFS/ME, legal help for obtaining disability, and other sorts of assistance. Although much of this information can be found online, it is nice to talk to a person who is helpful and sympathetic.

Don’t give up on finding fellow inmates! 

You are not alone.

5 Tough Choices You Face When Chronically Ill or in Pain

Originally Published in Psychology Today January 28, 2013 

By Toni Bernhard, J.D.

Suffering from chronic pain or illness—or, as is often the case, both—can feel like a full-time job. One reason for this is that we must constantly assess and evaluate if we’re managing our health and our relationships as skillfully as possible. This ongoing decision making makes up a major part of the workload in this full-time job—a position we certainly never applied for!

Here are five tough choices we continually face. There aren’t easy answers to the issues they raise: that’s why they’re tough choices.

1. Do we talk openly about our health problems or do we keep them private?
This is an ongoing tough choice we face whenever we communicate with friends and family, whether it be in person, by phone, by email or even text. If we talk about our health problems, some of them may respond judgmentally or even turn away from us. And even those who don’t turn away may change the way they relate to us. We want to be treated as whole people and as adults, but if we share our health struggles with others, we risk being treated like a shadow of our former self or, even worse, as dependent children.
On the other hand, if we keep quiet about our health issues—perhaps even acting “fake healthy” as I’ve been known to do— we risk leading others to misunderstand what we can and cannot do. In addition, by keeping quiet, we’re passing up the possibility of receiving much needed support—both emotional and practical.

If you’re like me, it can be exhausting, both physically and mentally, to continually assess and decide what you will and what you will not share with others about your health.

2. Do we ignore a new symptom or have it checked out by a doctor?
On the one hand, it’s not good for us emotionally to be overly focused on every little ache and pain in our body. In addition, we may be concerned that if we raise a new symptom, our doctor will think we’re being oversensitive or even a hypochondriac—either of which could affect the quality of care we receive.

But consider this. I read in one of my chronic illness books about a woman who ignored a new symptom because she decided it was best to assume it was related to her chronic illness. She also said that she waited so long to see her doctor because she “didn’t want to bother him.” The new symptom turned out to be stomach cancer.

What to do when a new symptom appears necessitates making another tough choice: wait or act immediately? We have to listen carefully to our body and decide for ourselves. It isn’t easy, that’s for sure.

3. Do we follow our doctor’s treatment plan or do we try alternative and unconventional therapies?
There’s no right or wrong course of action here, but it’s a choice that, for me, has been costly, both to my pocketbook and, at times, to my health. I used to spend hours and hours, utterly exhausting myself, combing the Internet for cures. As I wrote about in my piece “Finding the Health Information You Need on the Internet,” anyone can create a website, set up a payment plan, and ask for your credit card number. Anyone. Treatments-for-sale can be packaged to sound very seductive. People spend thousands of dollars on false cures. I know because I've done it.

On the other hand, I’ve also read about people who’ve been helped by alternative or unconventional treatments, so it may not be wise to decide to disregard them entirely. These tough choices—what to take, what not to take, how to assess the monetary costs, what to tell our doctor about what we’re taking or not taking—also make up a major part of the workload for those of us with chronic health problems.

4. Do we push our body to the limit or do we always play it safe?
Sometimes, the desire to be like healthy people is so strong that we can talk ourselves into pushing our body to do what it cannot reasonably do. About two years ago, my granddaughter Camden was visiting. I was so frustrated by always feeling sick when she was here that I decided to “act healthy.” We have a park next door to our house. I took her there for over an hour, helping her with the slides, pushing her on the swings. I was in a defiant mood: “I’m tired of being sick. I’m just going to act as if I’m healthy.” What I got for my effort was a week of payback with exacerbated symptoms.

On the other hand, I find that if I always play it safe, my body gets so used to the strict regime I put it on that I lose my ability to be flexible at all. For example, if I always nap at noon sharp, then if I’m fifteen minutes late one day, I feel like I’m going to collapse on the spot. So I purposefully mix up the exact time I nap so that my body doesn’t become conditioned to following a rigid schedule. That said, my ability to be flexible has its limits: I don’t have the luxury to just skip the nap.

If it’s possible for you, I recommend a middle path of gently challenging your body now and then so that you don’t fall into a fixed pattern of behavior that underestimates what you might be able to do. But, as with the other tough choices, I find this constant assessing and adjusting, assessing and adjusting to be exhausting in itself, both mentally and physically.

5. Should we aggressively fight to regain our health or should we accept our fate?
Constantly fighting to regain our health is also exhausting, physically and mentally. But the alternative of passively accepting that this is the way we’re going to be for the rest of our lives doesn’t feel like a wise choice either. Again, I recommend a middle path. It took me a while to realize that I could acknowledge and accept my health as it is right now, while at the same time continuing to try to regain the health I had before I got sick. These two courses of action aren’t contradictory.

It wasn’t until I began to accept—without aversion—however I happened to feel on any given day, that I was able to begin looking for ways to enjoy my life again. But an integral part of that life is keeping an eye out for new treatments. And, working to gracefully accept how I feel at the moment, while at the same time continuing to be proactive about my health is…you guessed it—exhausting.

I see that I’ve used the word “exhausting” five times in this piece (not counting its presence in this very sentence!). It’s no surprise that mental and physical exhaustion are the consequences of having to continually assess, evaluate, and choose a course of action while already sick or in pain. My wish for you is that you be as kind to yourself as you possibly can as you struggle with these tough choices.

Toni Bernhard is the author of the award-winning How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers. Her new book, How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow, is available for pre-order and will be released in September. Until forced to retire due to illness, Toni was a law professor at the University of California—Davis, serving six years as the dean of students. Her blog, “Turning Straw Into Gold” is hosted on the website of Psychology Today. She can be found online at www.tonibernhard.com.