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Readers Respond: How Do You Explain Chronic Fatigue Syndrome?

Responses: 44

By

Updated September 14, 2009

Explaining chronic fatigue syndrome to the people in our lives can be difficult. Get ideas for explaining chronic fatigue syndrome better, and share what has (or hasn't) help you explain this complicated condition.

It's Horrible

I was ill when I was 13/14 (I am 22 now) and after being ill, I suffer from ME/CFS and it makes things very difficult. It IS hard when people don't understand how you feel, or assume you are "putting it on" A syndrome such as this can turn your life around completely and it's very upsetting when people don't understand
—Guest RoseliD23

i know its hard :(

well, im only 13, so you will think i dont know what its like, but honestly, i do. my friends to be honest arent very nice about me having chronic fatigue, i take all me time trying to explain it to them and all they will say is 'oh' which really upsets me. i cant do the things i used to, and they think im avoiding them when i say 'sorry i really cant come out today' a way to describe it could be 'its a different sort of pain, which cant be described unless you have experienced it. every day i am in some sort of pain, and some days im completely inactive. i have no energy, im always tired, but no matter how long i sleep, i dont feel refreshed' a way to deal with it, for me, is finding something i really, really love. for me, its music. do things that you love! i listen to music and read about my favourite artists and look at pictures of them. it passes time and gives you a better state of mind! hope i helped xoxoxo
—Guest Guest 18

Life Changing

I was diagnosed with CFS a few months ago. To my friends and family I still look the same, but they don't know that inside I'm trying to work out who I am, getting to know my body again and understand my thoughts and feelings, because now they're different-I'm different. I'm struggling to accept that I won't be the person I used to be. I've always lived life without limitations, and overnight I became caged. Now I live day to day, doing what I can. I'm still able to work but not to the same degree. I'm not able to exercise at all, except for a little walking. In trying to adapt I'm doing things that I've always wanted to do but always put work, socialising and fitness first. Now I'm baking, making jewellery, photography. Doing things that don't involve physical effort, that give me joy and a sense of achievement, and provides the solitude and peacefulness that I now crave. I've had to reassess my life, and I'm trying to take the positives from this.
—Guest Sandra

There is no good explanation!

I got sick in 2003 (virus). I was a working mom & wife. Three years later I was diagnosed with CFS/Fibro& Chronic daily headaches. Since then, I no am longer able to work, I have lost numerous friends and, yes, it has defintely taken its toll on my marriage of 27 yrs. There is no way to explain this illness to someone who does not have it. The only way I have ever been able to explain it to my doctors and family is that it is overwhelming fatigue. I am not sleepy, but my body just needs to lay down and rest. I do not have the energy to stand, or continue any tasks. Then add the cognitive dysfunction where I can't remember, I can't find my words, I lose my train of thought, I forget (I am college educated!), then you have a good idea of CFS & what it can do to your life!
—Guest asticat

living with the condition

nobody can truly understand untill they have felt it themself, words dont really seem to cut it, im 15, and have only been diagnosed for a few months, it feels like your legs are constantly shaking, like butterflys are living inside your feet and moving all the way up your body making you un-easy, your eyes are so sore but no matter how much you sleep it just dosent improve, my dream was to become and actress but I cant even go to college now, nobody has any idea at all
—Guest Alice

Type 'A' to Type 'D'

It was refreshing to read all of the comments and how similar they were, and how difficult it is to describe how one feels with CFS. I was once a Type A, successful IT executive that was happy, enjoyed work, loved my family, liked to travel and have fun - you get the idea. Then I started having these occasional 'days' where I felt terrible and could not get out of bed for a day or two. Of coursed started seeing several type of doctors to determine what was up. Meds for depression initially helped, but not for the lose of energy. For 15 years I continually got worse each year to the point for the last 5-6 years I cannot work, rarely can do things that are fun, and most days am in bed for 20 out of 24 hours. Basically a Type 'D' - disabled. If not for my awesome, understanding wife, I would have totally lost any hope. I hope we all will find a 'miracle' some day that gives us back just a portion of our lives.
—Guest Imasooner

MS/CFS Sleep Walker

First off I am a man, and been hard pressed to find men with these problems, or maybe it is to hard to admit we men also have MS/CFS. I have read all I can find, and my doctor is very good about all my problems, I have others as well, besides MS/CFS which doesn't help, but my wife is very, very good with me and sometimes I don't know why she puts up with me, mood swings. I find depression very hard, and I get angry, I used to be a police officer and an Legal Agent, so must think very fast on my feet, in the Court Room, now I have problems remembering anything, brain fog, I don't drive anymore, because I sometimes fall asleep walking across the floor, without all the meds, I couldn't function at all, but like all the others with these problems, I see no hope , as there no cures, but I live as do the others, day to day, but I will say this don't take others as to there cures and there advise, get a good doctor, if you can, but live.
—Guest Edward

No Life Anymore

I can say that my life as I once knew it has ceased to exist. I was once a person that liked to exercise, take long walks, entertain friends, and kept a really clean house. Now, my husband has left me, I no longer have the energy to do any kind of exercise, and I spend my weekends on the couch so I can go to work the next week. I never take a vacation or do any fun things anymore. My greatest job is Friday night knowing that I don't have to get up early, take a shower, get dressed for work, and fight traffic to get there. If I do have plans for the weekend, it messes me up and I don't get the rest I need to be able to tackle the new week. It's so sad that my life has been reduced to this. Since my divorce, I have not dated anyone, and I have gained so much weight that I don't even recognize myself. In my mind's eye, I'm still the person I was 20 years ago. Then I look in the mirror and I don't know who I am. I miss me!!!!
—Guest shastadaisy

NHS - no help, skiver

I went down with CFS about 15 years ago. It took over 3 years to get a diagnosis from a specialist NHS ME unit. Diagnosed formally or not, my experience since is that GPs treat CFS patients with contempt. Several GPs have simply told me 'CFS doesn't exist', others that 'its just a depressive illness', one even wrote 'hypocondriac' on my records. If you get CFS in the UK, expect ridicule from the NHS.
—Guest The Duke

Hit by a train and dragged 500 yds.

feeling like you look fine, but knowing that you are not fine. Taking on too much, and paying for it for days afterward. Wanting to do so many things, but knowing that i cannot anymore. The worst is trying to keep up with my two best girlfriends, then having to cancel; don't know that they understand. I know my own family does not. I don't get invited places with them because I cancel too much because of the pain, and it seems like they don't even want to reach out to me to see how I am doing. That hurts, but what they don't seem to understand is this disorder hurts, too. So, double whammy and no family. Don't get me wrong, I have a great life with the man in my life, my living Buddha, who gives me the wisest of life's lessons, and I am grateful that he loves me unconditionally, as I do him. U see, he is a quadriplegic with his own issues, but he never complains about anything. he is inherently lazy, though, and I never have been. I think it has been easier for him, not for me!
—louisa1958

I use big words

I have had CFS/Fibro for 11 years. I recently discovered that CFS has been classed by the World Health Organisation as a Neurological Disorder since 1982!! Why doctors & other health professionals dont treat it as such is a disgrace in my opinion. I figured out it was neurological pretty early on & have made repeated requests to be sent to a neurologist with no success. My point is that doctors ,nurses etc have no excuse for not knowing what CFS is & giving appropriate understanding & treatment to sufferers. As for explaining my illness to others I find that telling them I have Fibromyalgia gets a better response than saying I have CFS. They dont want to appear stupid so they usually accept my explanation of chronic pain & fatigue without further comment. I have stopped expecting people to understand now,that helps too, but it still hurts to be accused yet again of nut trying hard enough or not wanting to do the things that others take for granted.
—Guest Frustrated

accepting/hoping

Before full-fledged CFS (and FMS) 4 years ago, I would get periods of being in bed with flu/not flu during holidays and weekends. I had experienced 3 family suicides after which my husband left, a highly stressful work environment, almost completing a PhD when my advisor developed cancer and disappeared and I gave up, losing a friendship and on and on. I was stressed to the max and so ignored symptoms until co-workers insisted I go to the doctor. Since my sister had lupus (rediagnosed as chronic polymyositis) and my blood tests indicated lupus, I was sent to a very famous rheumatologist who said I had Fibromyalgia, not lupus, although they can go together. I cheered until she told me I would still have a very hard time with my symptoms. My husband had just been diagnosed with Parkinson's, so the stress continued. I kept being denied sickness insurance until the name of the rheumatologist was given. So I finally had money. Everything above describes me. I live day to day.
—Guest carol Merson

Didn't get the chance to live

I think that the worst time to get M.E is as a teenager. I know its incredibly hard as an adult too, but isn't it worse when you didn't even get to experience life before it was stolen from you. I became ill with ME age 11. I turned 16 last month and still, I'm not in school, I don't see my friends and I'm depressed. Next year I have to do A-levels and have no where to go, because so far, I can't find a school that'll take me for only one course. It's been terrible, I've been depressed, still am, I've just got better at hiding it. There is a serious possibility that it will never go away; I'm gonna live the rest of my life stuck in a cage. This horrific illness locked me in a cage and threw away the key. I'm slowly getting better, but I feel like I have to be so serious all the time. I never get to have fun. before I can do anthing, I have to think about the next few days to work out if I can afford to do that. I might need the energy for hospital or something. It's just so hard. :'
—Guest JB

what does cfs feel like?

Energy. I have come to hate that word. It feels like an elusive concept, never to be had again. To a non - sufferer of CFS: Imagine not being able to get up at will, open your eyes wide enough, focus on driving, not being able to make plans, not able to work or have energy to care for your children, let alone play with them. Standing up is a major accomplishment, despite the dizziness and instability. Imagine being intolerant to heat and cold, unable to enjoy the sun, without feeling ill. The difficulty in trying to maintain positivity, after yet another day on the couch, or in bed. A flu that never goes away. There are moments of 'normalcy' that feel as beautiful as life could be. Then, it is gone, and back to the flu/fatigue/cfs. It is way beyond 'fatigue'. It is a whole body, system wide malfunction. The name is very unfortunate, because EVERYBODY inevitably says 'I have that, too!' Believe me, if you can get up without thinking of the consequences, you don't have CFS.
—Guest mom2-4

Chronic fatigue

When I try to explain my fatigue to someone else who has never experienced it, they often ask what the difference is between between being tired and fatigue. I tell them when I'm tired, I feel like sleeping but when I feel fatigued I feel as if when I stand up I'm going to melt into a puddle. I just don't have the energy to do anything! I don't feel tired. I too feel guilty like others because I just can't myself get out of bed or off the couch to do anything. I get depressed because I look around me at all the things that I would have done years ago but no longer have any energy to do. What makes it worse, is that now the pressure is on my husband to do almost all the housework when he rarely had to do any before. He's good about doing it and I try to do what I can on my good days but then I have to be careful not to overdo it or I will pay for it the next day or even 3 or 4 days. So, the best solution for me is to just pace myself on my good days and on the days I try to do my art.
—Guest Ponder

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