What do you say when someone asks you to describe your CFS/ME/FM?

Discussion in 'Fibromyalgia Main Forum' started by Alyssa-Admin, Feb 25, 2015.

  1. Alyssa-Admin

    Alyssa-Admin Active Member

    I always think it is good to be clear, concise, to the point and helpful.

    So, what do you say when someone asks you (and really is interested and cares to know...).

    Please do share, as I am sure many of us can glean some great things other people say to people.

    For me, I say that it is a chronic pain illness, with over 200 co-existing symptoms. It is an auto immune condition, with a variety of speculations as to what it is and what causes it though. Sometimes I am great -and I make the most of these days...other days and weeks I could be in bed recovering from that one day. Every day is a new day with FM - and the most important thing to do is to be able to listen to our bodies when it is time to call it quits, instead of pushing ourselves (like many of us do).

    (I am not exactly 100% with what I say tbh...but at the moment haven't come up with anything better!
  2. sunflowergirl

    sunflowergirl Active Member

    Having had FM for about 30 years, and realizing that MOST people really don't want to know particulars, I just tell them I have a "broken body" and leave it at that. Truthfully, even family doesn't want to hear. I've been told by close people that there's nothing they can do to help me so just don't talk about it.
  3. Alyssa-Admin

    Alyssa-Admin Active Member

    I am really, truly sorry to read that this has been your experience. Unfortunately, you do just *know*when people couldn't give a toss.

    Ib saying this... I think it's important for people to be educated. I'm not talking about a whole lecture... But just even sharing the spoon theory can help.

    And in regards to nobody's interest and support... That's hard.

    For me, although I try hard but to complain, but my husband *knows *when I'm struggling. He does our groceries, helps lift and put things into the washer and dryer, and in general, makes sure I'm OK.

    Yep. Hands up. I married an angel!
  4. Alyssa-Admin

    Alyssa-Admin Active Member

    I think one of the biggest things that changed my life was becoming more involved with the local community who has FM/CFS/ME. We live in central Scotland - not a metropolis by far! There are around 40 of us all tolled...and we get together for lunch (everyone brings their own due to food intolerances), go out for a Christmas meal...but also have the same group on Facebook. So it really has made a huge difference for me - because they are not 'virtual' friends at all.

    Yep. I took the initiative, I got in touch with the Fibromyalgia Association UK and they helped me set everything up (right down to insurance and a separate phone line). We also had group meetings with just a cuppa and brought in interesting speakers, tried some gentle exercises, you name it. All the papers and local Facebook groups were happy to post about the get togethers. And it worked really well.

    Thing is - it is one thing to talk to people who have no idea of your experience of daily life. In fact, someone with these illnesses would only have their own experience to go by. We have knowledge of each other - but not understanding. However, when you are with a group of people who DO have that understanding - it an make a huge difference. At the very least, you don't feel so quite alone and isolated. And this way, I have been able to discuss what is going on for me, so that I don't have the 'need' to hit my husband with it the moment he walks in the door.

    Check it out! See if there is a support group in your area...and if not...where there is a will, there is ALWAYS a way!

  5. RadioFM

    RadioFM Active Member

    [​IMG] Starts here in this forum!
  6. IanH

    IanH Active Member

    I am sorry to hear of your situation sunflower. However I do have the same with about half of my family. I am lucky, in the sense that it has been part of my job so people do take a little more of an interest.

    How do I explain it?

    ME/CFS is an autoimmune type disease like MS. That means everything is out of balance in your immune system. It makes you more prone to infections, unable to do everyday things without getting exhausted or in pain and unable to think and remember things correctly. I was once completely disabled by it but I have improved. It goes up and down just like MS. Medical science hasn't yet come up with a cure or even an effective treatment but they have found problems in the brain and immune system which help to explain it.

    I deliberately compare it to MS because most people know what MS is and know that it is a disease and not psychological.

    I usually get the following questions:

    So will you end up in wheelchair?

    Some do most don't

    Will it kill you?
    Mostly no but there are many people who are more likely to get cancers, particularly non-hodgkins lymphoma. Some people have heart problems.

    Is it a weak immune system?

    Not really! The immune system is overactive in a way. It does not turn off after being activated by infections, exertion or common poisons. Its like when you get a bad flu. Its your active immune system that makes you feel so sick and fatigued. Its your immune system that lays you low. I feel like that most of the time and if I'm not careful I would end up in bed.

    So is it an infection, a virus or something?

    Possibly many cases are triggered off by a virus infection, most commonly mononucleosis, caused by the Epstein Barr Virus, a type of herpes virus.

    You'd think, in this day and age they would know what is wrong and cure it.

    Yes but most autoimmune diseases have no cure and they don't even know what causes them in the first place eg they don't know what causes MS, RA, Psoriasis or Lupus.

    I thought they knew what causes MS, isn't it loss of nerve sheath in the brain, so people eventually become paralysed.

    That is an effect of the disease but they still don't know what causes it. ME/CFS is the same, a lot of symptoms but no clear cause. Yet!

    Is it a new disease then, maybe caused by poisons like lead or something.

    answer: Nobody knows, the first recorded outbreak was in Los Angeles in the 30's and later in England in 1955 where they called it the "Royal Free Disease" but they suspect Darwin had it. Also Florence Nightingale probably had it after an infection.

    How long does it last, like will you just get better with no treatments?

    No, you don't get over it but most people do improve

    How do you cope?
    I take one day at a time, avoid overdoing it. It looks like I am a lazy unsociable sod but if I am not careful I will collapse.

    I only go into treatments if they look as if they are interested or themselves take supplements or they start telling me that this or that will help me.

    I sometimes tell people about the celebrities with it.
  7. happycfs

    happycfs Member

    I tell people that I have a neuro-immune disease. It is called ME/CFS, once referred to as chronic fatigue syndrome. It is much much worse than just fatigue; it is a whole body illness, mainly neuro-immune though. Neuro, for the nervous system. And my nervous system gets over-stimulated extremely easily; sight, sound, touch etc. and then my immune system kicks in hyperdrive and I get extreme weakness and pain. So, the nervous system goes haywire, then the immune system does. As a result, I am very ill, all day every day. There is no cure... So please help me raise awareness. ...That's my usual explanation.
    Alyssa-Admin likes this.
  8. Alyssa-Admin

    Alyssa-Admin Active Member

    Ian - this is a really excellent way to discuss it - by comparing it to MS (which there are many less people in the world with MS than there are with CFS/ME and fibro...but I believe that is because they have proof of what is going on...so it becomes 'valid'.

    I think that it is IMPERATIVE to share gently what it is...because that is how awareness is raised. I wear a fibro plastic band from the FMA UK charity - people ask questions...what is it?

    I tend to tell them that it is like my body is on a constant roller coaster of feeling ok, to not being able to do anything from pain and exhaustion...and that it is all about pacing. I also mention that there are over 200+ co-existing conditions that come along with FM...But that we have hope! (One friend said to me, who had cancer and has been in remission for 5 years) 'At least with cancer there is an outcome one way or another - with FM, it is a daily battle'.

    Obviously, there is a time and place for everything - and you can tell when someone is genuinely interested or not. A couple of months ago my husband was expanding the health app business and looking to partner with others. One particular CEO of a company actually did a whole whack of research on FM (the app we were building at the time was for FM/CFS/ME, had loads of questions...bottom line, he did more than express interest - he sought out information. Bottom line - he got the job.

    For me, I generally have to wear a neck brace when out and about - especially in the car, as I have a lot of different issues I won't bore you with in regards to my neck...but when people SEE that you have a neck brace, a walking stick etc - they SEE that there is an issue. It is the fact that these illnesses are INVISIBLE and unless we are using mobility aids, the old saying stands 'but you look great!'.

    (That is why my friend and I wrote a book for parents of young families - illustrated, where the parent has an invisible illness and how they work around this, to ensure that no matter what day the parent is having they are still having interaction with their child/ren).