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To tell or not to tell

Last week, I found a form letter for "friends and family" from the HummingbirdFoundation website and posted it here on the forum for people to use if they wish to explain to "others" what we are going through with this illness.

M.E. patient's family and friends letter


I'm giving you this letter to let you know that due to illness I am going to have to cancel/delay/modify our planned get-together.

It is important to me that you understand that the problem is not fatigue. That is a normal part of life. Tiredness wouldn't stop me seeing you any more than it would stop you seeing me!

The relapse of M.E. symptoms caused by physical or mental overexertion is another kettle of fish entirely and quite a long way from anything healthy people would experience

Problem one: When I overdo things I experience problems such as inconsistent CNS (neurological) function, cardiac insufficiency and an inability to maintain homeostasis.

These problems can cause symptoms such as:
Moderate to severe low blood pressure.
Heart problems such as a very high heart rate, chest pressure, heart pain and a fluttering and straining heart.
Feet burning painfully and turning blue/purple on standing.
Breathlessness and air hunger.
Feeling very nauseous and as if 'poisoned.'
Poor sleep, and difficulty getting to sleep.
Poor digestion.
Vertigo, minor seizures, blurred vision and/or muscle pain and weakness.
Severe pain at the back of the head, where the head meets the neck.

These symptoms can be very scary and unpleasant to live through particularly as often many of them occur all at once and often in unpredictable patterns.

Problem two: These worsened symptoms are also always accompanied by:
A further reduction in the time able to be spent upright or being mentally or physically active in a day - which means difficulty with the many small tasks that make up my usual routines of daily living.

Most of these symptoms and disabilities really hit hard around 48 hours after overexertion, rather than during the actual visit. These problems can last for days, a week or two or more after a visit. Sometimes the reaction can last months.

Which activities will cause me to overexert varies a lot from day to day and week to week depending on how much I have been doing lately, as well as my overall health.

Problem three: Repeated overexertion leads to disease progression in M.E. So this means that however I may be tempted to do more than is wise for me to do, I should not, because the long term consequences can be so dreadful for me.

I am so glad that you continue to make time for me in your life, as I do very much value our friendship. I am sorry that I can sometimes be unreliable. Believe me, I find all this far more frustrating than you do, as I live with it all the time.

If you'd like more information on M.E. please check out the HFME website, videos or books. Thank you so much for taking the time to read this

I just, mindlessly posted it for other people to use but, when I had some time later, I thought to myself: "would I ever use such a letter?
I was brought up by European parents who always taught me not to share private information. When I was a teenager and got prety ill with Crohn's disease, I was told "the less people know the better". I carried this load in my heart and only my best friends knew of it because i would periodically "disappear" from school for a week "vacation" which really meant "hospital stay".

In addition, we are conditioned in our society to look up to people who while facing difficulties in their life, pull themselves together and act normal they are going through terrible adversities. How many times have I heard of specific people in my community going through cancer or heart disease and people admire them for their strength. They are admired for not complaining or even better, keeping it a secret from the community.

When I got "hit" by this virus 10 years ago and it developed into the most agonizing illness with constant pain and inability to function, it was a double blow. I felt deathly ill, yet no one knew what Chronic Fatigue Syndrome really meant. They certainly didn't think of it as anything serious. Even if they heard about it, their main understanding of it was that it renders someone a little more tired than others and somehow it's tied to depression.

My neighbors, friends and family started to see less and less of me. The few times I would be out, they would ask me where was I all this time? I was speechless as to how to explain to them what I'm going through. I would sound like a complainer (big sin!) or a malingerer or deranged somewhat - definitely depressed and becoming hermit-like.

No wonder that I lost contact from friends, some family and neighbors. No one called me that they didn't see me in synagogue during the high holidays. No one called that they didn't see me at family weddings or gatherings.

I think, they all have an image of me that somehow maybe I had a nervous breakdown or am in a deep depression which I can't get out of and that's why I have "disappeared".

I am suffering in silence and instead of looking at me as a "hero" like they would if I had cancer, they look at me as a weak, meek
defenseless loner.

Is it my responsibility to educate my community about this illness? i am thinking now that maybe it is. Maybe it is all of our collective responsibilities to educate whomever we know about this illness. It is not easy to do. We take the risk that they will look at us as making exaggerations and dare I say "complainers"?

Yet, we are upset that the world doesn't know enough about what having ME/CFS is all about. Maybe it's my fault and others like me. I am thinking now that it's better to tell it all with all the ugliness and pain attached to it. Maybe if everyone would do this wherever they lived, the world would start to get a feeling of what this illness really is.

It might be too late for us to change the people's view but, I think that we owe it to the next generation of patients to pave an easier way for them.

I am thinking now that the courageous thing to do is to stand up and tell it all!

What do you think?


The main reason to tell is because they see you can't keep up. That's the whole thing. We can't hide it, not over time. We might be able to pass for well for a few hours. But as time goes on, they see we can't keep up.

The last long term boyfriend I had, I thought I was hiding quite a bit of it from him. Then he told me, I wasn't. He said he saw alot more than I thought he did. So that really got to me. I think when people see you often, they do see stuff. We just can't keep up with normal people. They see us trying to conserve energy, or they see that we run out of energy. They just plain see stuff. You can't hide it.
I agree with both of you, Neilk and Carrigon. We need to speak up generally, but those who have close contact for a long time will see more than we think they do (though not always interpret it as we would). Sometimes they can interpret what they see in very bizarre ways too - I don't want to get into specifics from my own experience, but in general they interpret a lot of what we say and do within the context of being healthy. In other words, healthy is their standard. So their interpretation is based on how we are different. Instead, I see that we are living the in Shadow Lands, a varient of the Twilight Zone. Our circumstances are alien, and sometimes our cognition is damaged, but its basically normal psychology in response to a weird life.

I have almost always told people I have CFS, although now I say ME. Unfortunately many times my brain has been so fubar that I could not reply rationally when someone said something. Like one time I got hit with the "everyone gets tired, thats no reason to ...". These days I would be able to make a response, back then I was so brain dead I could no longer read.

If we don't inform people about our illness, who will? The media? The psychosomatic lobby/church? The average GP whose knowledge of the condition is so out of date nearly everything they think they know is proven to be wrong?

Bye, Alex
thats a great letter, it is very hard to explain how ill we are..i was shocked and still am by peoples reactions to these illness ....i do not know every illness around but can say personally that with my illness fibro/cfs and the many others that came after i couldnt beleive how little understanding and sympathy people havee given for these illness..ive been made to feel ashamed for having these illness...treated as if im just crazy at times....no one should have to go through illness and i feel for anyone ill whatever it may be i have always been like that...

i dont understand why poeple treat these illness with such disgust at times...at least thats been my experience...i have tried and treid to explain to family how debilitating these illness are and how ill i am but someone always knows someone who swears its just in peoples heads or a fake illness...it is disgusting and crazy..ive given them info after info...and explained over and over...

i think the letter is a wonderful idea and will help many many people..at this time my extended family doesnt seem to understand doesnt matter ive given info to read, told them etc...they think because i look fine, fat, and healthy that theres no way im as ill as i say...but God forbid my sister get a common cold the world comes to a stop...

i wish more research were done im ill...im tired and hurting all time im a shell of what i was.....i hope the letter helps many people its a great idea if you have peopole around you who are caring and supportive
What drives me crazy the most is when someone tries to compare something they have to our illness. Like my aunt said to me that she has "crippling arthritis" but she still works full time, takes care of her house and husband and travels all over the world and the country. And I was like, you cannot compare just having a pain thing and or joint thing, to what we have. They are two separate things. She doesn't get cognitive symptoms, she doesn't fatigue, she doesn't get autoimmune problems, thyroid problems, IBS, POTS, the list goes on and on. If all you have is pain, and you are on pain meds that help you, like she is, it's totally different from what we suffer from. You can't compare illnesses, and people always try to do that with us. They're always like, I have whatever, but I push myself and work. They don't get it that we have something far worse and far more debilitating.
When I was diagnosed in 1989 by Jesse Stoff MD and two years later by Jay Goldstein MD, I was a fighter. I told everyone about this disease. Being the librarian at our local support group I read everything and went to conferences. I couldn't work at my profession so in a small way this became my job, my cause. Once an old client and I thought a friend said I was on my soapbox again. It seemed the more passion and conviction I had the less my family, friends, associates believed me. At meetings I was known as the cheerleader. Well the years past and I got sicker and had less passion to spare. It's still in my heart but I save it for bigger things. One being on a local TV station and being interviewed on PNR. I tell people what my illness is and why I'm on disability some accept it, some don't. Just recently at the ER, FM was used by Drs but no one uttered CFS. Maybe I give off the impression not to mess with me but I hardly explain anymore, I'm too tired. People will insinuate depression but most don't say it even though it appears they are thinking it. Through experience I learned awareness is one thing, research and cure is another. I just want to stay alive for a cure. As much as it hurts to run into an ignorant person saying erroneous things, I pick who I fight my battles with and really few are worth the tax to my body and soul attempting to educate them.
That's a great letter, however I think it depends on the people reading it whether it helps them 'get it'. I copied a very similar to this off the net a couple of years ago and gave it to the closest people around me. It didn't make a blind bit of difference or if it did, it was forgetton almost as quickly as they'd read it.
I have one friend, who I used to be able to meet up with once or twice a year for an hour tops. We would both travel to see each other, meet for a coffee and then travel back home.
Not living close was the perfect way to only spend a small amount of time with her without having to offend her. I also showed her the other similar letter to the one above hoping it would help a bit.
I haven't seen her for a long time now as i've been too ill to meet, but now she's wanting to come visit and spent the weekend 'to make things easier!' and so we can see each other for longer etc.
I can't begin to explain how horrified I am, even just thinking about it! I haven't even been able to meet up with her for one hour. So some more explaining is going to have to be required, again, i just don't have the energy to explain again right now, so another year will probably pass...
I don't think you have any responsibility to tell people. I think your responsibility is to yourself, taking care of yourself, whatever that may entail, and to your close loved ones. I think any advocacy and education work is fully optional and not something one should feel in any way obligated to do. It's something one should feel called, not obligated, to do. I think if you think it will help you and is a good use of your time and energy and you want to do it, you should. But I don't feel you owe anyone or society or other patients anything just because you happened to get sick. Some are called to do that type of work and some aren't. I know others may disagree, and I don't know how well I'm explaining myself, but that's my view. In addition in my experience educating healthy people about things like this usually doesn't work anyway.

ETA: Of course I also don't think you should at all feel like you need to hide your illness, you should say what you feel comfortable saying about it, no more no less, in my opinion. Of course it's possible the people you talk to may be made uncomfortable by it, but I don't think that's your problem. If they don't want to hear it they can let you know and then you can respect that boundary. If I feel comfortable with doing so I tell people I have chronic health problems if it comes up in some way but I leave it at that. With some people I don't want to share with, I say nothing about it at all, it's none of their business. With friends and family, I've shared my diagnosis, but I'm past the point where I bother trying to tell people details that they can't relate to or understand and honestly don't seem to care much about anyway. In my experience people will have their own opinions regardless of what we say to them about our illness or how many times we say it.
By the way, this is off topic, but shouldn't my avatar picture or profile picture show up by my comment instead of the little blank face and torso? Anyone know? Thanks. Hope you don't mind my asking on this thread Nielk.
HI Ocean, earlier I said I think we should speak up. This is very much a should, not a must. This is a confrontational strategy, and depending on current health and temperament it could be a very bad idea. The more sick you are, the more precarious your position, the more important it is to put yourself first. So I agee with Ocean that you should speak out if you are called to it - that kind of commitment will help you cope with the added stress of speaking out. Its not foolproof though, advocacy has wiped me out mentally, physically and emotionally many times. What I am suggesting, really, is that if your heatlh permits you should at least think about it. Things don't improve on their own, and we need every voice we can get, every little action. There is nothing that is too small to be one more step to making this better for all of us. Clicking like on facebook? Thats a plus. If thats all you can do, thats enough. I know how sick many of us are, there was a long time when booting up my computer was too hard, and the internet a nightmare. You can't speak out or be an advocate if it crashes your health. Bye, Alex
Is it my responsibility to educate my community about this illness? i am thinking now that maybe it is. Maybe it is all of our collective responsibilities to educate whomever we know about this illness. It is not easy to do. We take the risk that they will look at us as making exaggerations and dare I say "complainers"?

Yet, we are upset that the world doesn't know enough about what having ME/CFS is all about. Maybe it's my fault and others like me. I am thinking now that it's better to tell it all with all the ugliness and pain attached to it. Maybe if everyone would do this wherever they lived, the world would start to get a feeling of what this illness really is.

I personally believe that we NEED to put our reality out there or otherwise what right have we got to complain that people dont understand us when we arent being willing to share with them what it is like. Unless they are helped to understand, they dont have a hope of understanding us.

Those of us who are strong (emotionally and mentally.. not all of us are strong enough in these regards) enough, need to be doing this for the rest of us.

If one can avocate even if it is just to a neighbour one come across who asks why someone hardly leaves their house, that may help to change someones views. (I personally thou dont believe anyone should be trying to do this thou if it causes emotional/mental stress to the degree that it causes a crash).

yes it can be embarrassing to be so often sharing such private, personal info but it is the only way we can hope to educate others on this illness. I get myself over that hard part of sharing telling stuff, by telling myself that Im doing it for all of us.

Even if Ive only managed to get a few people to realise how serious our illness is, I know Ive helped a bit to change things. Yes we are helping to pave the way for those others who may end up with our illness in the future...
I think it is very important for pwc to do whatever they can whenever they can. It's valuable to all suffers but it's a way of satisfying one's own voice. In the worst prisons/concentration camps rebellion was a way of surviving for captives and we must do something at sometime to be heard for our own sakes. Right now I am very sick and down but things change and opportunities to promote change happen. Pick the easiest thing for you to do but do something when you can. It is the only way to fight back at a gross injustice.
So well said Nielk and I like.......
'I am suffering in silence and instead of looking at me as a "hero" like they would if I had cancer, they look at me as a weak, meek defenceless loner'...it is so true.

That's why I ALWAYS say M.E. or Myalgic Encephalomyelitis - baffle 'em with the big words and they don't dare question you when you explain that you have inflammation in the central nervous system which affects many parts of your body!
Thank you for posting this. I, too, was taught to hid illness (and negative emotions). I was able to hide it from most people for a couple years, but now I'm on intermittent leave from work and may have to take a leave of absence very soon. I haven't told my supervisor or my boss, although they obviously know somethings wrong. I just couldn't find the words to say it. I am afraid of the false ideas people have about CFS and I am ashamed, even though I know logically this is not my fault, or a character weakness. I have extended family members who are very angry at me for missing birthday parties, etc, and though I have tried to explain it, I haven't been very successful.

The letter you provided gives me a framework to write those letters that are long overdue. Thank you.
Thank you so much for this letter, and even more for the comments that follow it.

I rarely post on the forum, as I am usually too brain fogged to want to commit words in writing for the world to see, in perpetuity.

However, I was so moved by the fact that nearly every word in your comments expressed so exactly things I find myself so often thinking to myself, such as being perceived as a "complainer" or "deranged," rather than strong and heroic for enduring and overcoming this debilitating illness for decades, that I feel compelled to post a reply.

I too have "sufferred in silence," primarily and increasingly alone, as you so eloquently describe, with no one calling to inquire why they don't see me, or to ask how I am, even after I had to leave a job I poured my heart (and all my mitochondria and immune system) into, literally, for years, permanently damaging my health.

I did recently begin to have the language, similar to that in the letter, to begin to explain to people why they don't often see me outside the house, and so have begun to give a brief, clear explanation to neighbors across the street, along with an apology for not being a better neighbor. This has been somewhat empowering for me, so that at this late hour, I can stand up for the great person I am, and do what I can to make the future different from the past. If all I can do is raise consciousness in the very few people with whom I do still come into contact on a daily basis, at least that is some purpose in my life, and I also plan on sharing this post on the facebook page I keep mostly just for ME consiousness-raising.

I definitely plan on using the letter.

At this moment, I am awake feeling very ill, not sleeping and non-restored due to having overexerted last night (by having dinner and conversation afterward with another couple) during a rare opportunity to socialize last night. My eyes again cannot stand light this morning, the old familiar photophobia, aching everywhere, feeling queasy and having great difficulty thinking.
But upon skimming over page one of PR and seeing your post, I am so grateful for it, I am compelled to push myself to post this reply. (And I wouldn't be able to do that, except I have experienced some remission of symptom sand improvement in cognitive functioning, since having been able to see an ME specialist for nearly two years now, and to treat the illness to some extent.)

Thank you,
I think we need to speak up, because how else will things change? Like Rabbi Hillel's famous quote "If I am not for myself, then who will be for me? And if I am only for myself, then what am I? And if not now, when?

Who else is going to speak up for us? I keep thinking of the kids who have this. I'm a grown-up; the ignorant, thoughtless comments people make may hurt my feelings, but I'm not vulnerable the way young people are. I feel like I have to speak up and educate people about this disease, for the sake of the kids. We need to change attitudes.

And it's so hard. It seems like shouting into a great void. I don't know if I'm reaching anyone, or if anyone believes me. But I just keep at it and hope it makes a difference somehow.

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