Recently been diagnosed with CFS: family think I'm lazy :(

I can totally sympathise with you.  Many people have family, friends and co-workers who deny the diagnosis of CFS.  If you can work, then you are just being lazy.  Just get up and get on with it.  People with CFS/ME are housebound and in a wheelchair so it can't be that.  This is one of the most difficult parts of this devastating life changing illness - and it is also dangerous for us sufferers.  We are made to feel guilty and to question ourselves.  We get depressed because people just don't understand.  We push ourselves and make ourselves really ill.  You have to be strong if you can.  Don't let people bully you.  You are lucky to be able to still work though I am sure that is all you can manage.  I pray that you can continue to do so because it is dreadful having to give up all of the life you had before.  I had the same thing with my family.  They couldn't understand how I could go out shopping one day and then two days later be bedbound because of it.  I forced myself to do things and found myself on a roundabout of activity and post exertional malaise.  I got depressed and stopped trying to explain myself, rather I would just sort of hide away when I was relapsing. All of this has contributed to my decline and today I am unable to work, have not only CFS but diabetes, hypothyroidism, sarcoidosis, depression, fibromyalgia, spinal arthritis, carpal tunnel syndrome, high blood pressure, POTS and it goes on.

If you can take anything away from my story, take this.  It is your body, your illness and your decision how to manage it.  Try to get family and friends to read up about the illness but if they refuse to acknowledge your ill health then there is not much you can do about it.  But do not, under any circumstances, allow others to dictate how you cope with CFS.  Go back to your GP and ask for a referral to a clinic or group where you can learn about pacing and energy conservation.  Then just tell everyone what you are doing, why and stick to your guns.  If they are unwilling to understand the illness then they have no right to comment on your methods of coping.  Be as firm as you can.  Come back here often because we all DO understand.  You might get advice on coping with specific things or information to help you understand what is happening but most of all you will get a sympathetic ear.  I wish you well and hope that you don't deteriorate.  Look after yourself as best you can.  It is your body, and your illness, and only your decision on how you deal with it.

Linda x 

I totally agree with Linda's response to your post. Don't let others dictate how you cope with this illness, because it's your body and your possible relapse that's on the line. Pace yourself and do what you have to do to deal with this as best you can. So many of us face the same attitude from friends and family. My wonderful husband of 30 years still doesn't understand how talking, especially on the phone, fatigues me. If there's a support group in your area, it could be a great source of, well, suport. Others with this illness, like those of us on this formum. will understand.

It is so worrying when people get the wrong impression. I can only hope that you find the strength not to let other peoples negativity affect you. As Shreddie says if you can work you're just being lazy. Heaven forbid, if you can't work then you must be a bad scrounging character. You can't win either way. I hope you can find some good support. 

YOU ARE NOT A HYPOCNDRIACT.this is an illness that is unknow to the society of today.

Hey Zerda, good for you working full-time, i could never do any type of job as i would fall ill quite quickly. That's the worst thing about CFS before i was this energetic. happy outgoing guy, nothing ever a bother NOW i know i come across as depressed and or lazy, this does bother me. I know who i am. I think it is grossly wrong to think of us as 'just fatigued' yes varies for everyone but my experience is it's not really fatigue, i've ran marathons and triathlons, i know fatigue this is ILLNESS, big differecen with the fatigue a symptom of whatever is wrong. People think of fatigue and just think, ack no big deal, you can rest it off and feel bette but us folks with CFS do not have that luxury. It can be rather unrelenting. I'm1 year inot my illness and many times because so many tests come back negative i do think, am i depressed, is this just all in my head, i then go outside (i used to be an athlete) start to walk or attempt to jog, i then KNOW this is 100% NOT in my head. It's been a scary experience having been so fit but i continue to cultivate hope and learn and push for recovery everyday, whatever i can do. People do get well from CFS, can just take a littlte time. I'm a beliver in trying things, herbs, supplements, anything that is not overly dangerous.

I feel very strongly about this.  Not only do we have to deal with the grief of losing our livelihoods, of losing the person we were, as well as the physical symptoms we must also become activists for the CFS/ME cause when we are least able to do so.  No other illness is viewed so cynically by non sufferers and the medical profession.  And just when we are at our lowest and least able we are let down, often by those we trust and love to be there for us and take care of us.  I know I am just going over the same things but really, I mean really!  This is the 21st century - we can grow and ear in a lab and attach it to someone's head, we can operate on babies in the womb, we can change a man to a woman and vice versa, we gather in our millions to support people we will never meet with troubles on the other side of the world.  So why, why why can't we get people to understand that CFS/ME is an illness, that it is often degenerative, that it is life changing, life destroying and even life taking?

I have a theory that only strong people get this illness.  Those who have battled in past through illness, trauma, stress - those who seem to fall and get up again over and over till their bodies just can't get up again.  So let's try to dig deep for ourselves.  Let's be selfish for once and just do what we think is the right thing.  For us.  For our health.  For our quality of life.  And for our recovery.  Let's stick together and try to help each other out through positivism, understanding, advice and information giving and when we are able to reach out and grab the attention of the country and demand some help and understanding.  You are all so brave.  I know how much energy this takes, just to post a message when you are foggy brained and in pain.  But we need to look out for ourselves and each other because for sure and certain, no-one else is at this time.  Rant over.  

Linda x

Thank you for all of your lovely and helpful replies! I would have replied sooner, but, of course, the simple act of typing out a post was too tiring a task to manage... I will definately do what's best for me. I am trying to do the usual stuff in the evenings after work in the evenings byt with rest between each thing. I'm hoping this will work for me as I can spend an entire week rested up and it does nothing for me (you know how people talk of being "rested" after a break? Foreign concept for me. I don't actually know what rested feels like). My default setting is exhausted, empty, aching and tired.

I have actually thought about giving up work, or working part-time, but I'm the breadwinner in the couple and we need my wage to pay the mortgage. This adds another burden on me. I want to go back 15 or so years to childhood when I could just sit on my room at my parents' place and not have to worry about anything. People outside of my family think I'm successful with a good job, but actually I just scrape through life because it's what expected of me. I've somehow managed to do alright for myself but at what cost? I sit behind a desk all day and come home in tears because I'm so tired It's my lunchbreak now and I want to slip under my desk and hibernate for a million years.

Anyway, sorry for the self-indulgent rant - it's just nice to know I can moan to understanding people here - thank you