I have a pretty bad case of fibromyalgia. While it isn’t life threatening it is quite painful and uncomfortable. A lot of people overlook it but believe me the pain can at times be unbearable. For a while I was in and out of hospitals trying to get the pain managed. Just having friends and family memebers come up to sit with me, even for an hour really lit up my day. Now I am finally able to manage the pain outpatient but unfortunately a lot of the drugs have bad side effects specifically the narcotic pain relievers. At times I can’t drive and having friends offer to take me places is so helpful. Most of the time I decline but like you said, it really is the thought that counts. Just knowing you have someone that would take a few minutes out for me makes me feel better. It’s the little things sometimes!

I’m not sick myself, but I’ve recently had experience caring for relatives with cancer. Every sick person’s situation is unique, so it’s hard to gauge exactly how you can be of help. But if you can manage to find out, the help is enormously appreciated. During my cousin’s husband’s last days with kidney cancer, the parents at her daughter’s preschool organized a schedule so that each Wednesday one family would send the daughter home from school with a dinner. The really touching part was that someone told the families that my cousin is a vegetarian but the rest of the family is not–resulting in many half-meat, half-meatless lasagnas. That touch of extra, personalized care meant a great deal to us, and it made dinner one less thing to worry about.

Now my cousin’s mother is battling stomach cancer, and countless friends have loaned/given her books in her favorite genre. I ordered her a paper subscription to the NY Times, and she mentions how wonderful it is every time I see her.

My point is: figure out what exactly the person needs or wants, or ask someone close to him. Think: “what would I want if I were in this situation? What does he normally do that he can’t do now that he’s sick?” A lap tray for the laptop user, or a boxed set of John Wayne movies for the western lover, or an assortment of interesting juices for the person on a liquid diet. And once you do find out how to help, don’t ask the person if he would like you to get it for him–it’s sometimes very hard to say yes. Just leave the lap tray/movies/juice at the house; that way the sick person won’t feel embarrassed to ask for favors but can still feel free to ignore it if he actually doesn’t want it.

And a final tip–don’t give the sick person your phone number with instructions to call you if he needs anything. He won’t. You have to be the one to call him regularly to find out if he needs something. Don’t assume that since the sick person isn’t asking for help that he doesn’t need any.

Natalie, you are so right about not asking, but just doing! My father passed away from pancreatic cancer and left my mother to care for three children all under the age of twenty. People sent us giftcards for food, sent dinners and did the grocery shopping for us..none of them asked if we wanted that stuff, they just did it and it was wonderful and just what we needed.

I have had glandular fever/ME more than once. Offers of practical help are good, especially coming over with food, books, flowers. Here’s my list:

1. Believe that I am ill.
2. Accept that I cope in my own way, and don’t try to cope in YOUR way.
3. To me, optimism is bad luck, so please don’t try and force me to be positive, and please, please don’t be optimistic for me. I am not saying positive things because I don’t want to.
4. And please don’t talk about the things we’ll do when I’m better. To me, that makes getting better less likely. Yes, I know it’s superstitious, but I’m the one who’s ill – please respect my superstitions, however silly!
5. If there are things I don’t want to talk about, please don’t talk to me about them. If I’m not talking about something, that means I don’t want to hear about it, eithere.

Basically, it’s my illness, not yours!

Not really related, but if you ever see someone have an accident – for example falling off their bicycle, never ask “are you all right?”. If they were honest, they would say, “of course I’m not all right you idiot, I just fell off my bicycle!”. It is much better to say, “do you need any help?”.

I understand Lucy’s feelings as well, and I have the same ‘thing’.

My very best friend was gay and HIV positive. So where many, and more than many of his acquaintances.

They usually became a picture of health after they found out. had special timers to remind them when it was time to take their meds, so they weren’t late a second. Stopped smoking and drinking, and got juicers. (you get the idea) They also all died in a matter of a year.

My friend on the other hand did not bother to do any research on the subject like the others. He continued to smoke, and changed none of his bad habits. He died 20 years later of an overdose, even if he had AIDS, but that didn’t kill him.

I myself hate it when I tell someone how worried I am and they say I’ll be fine. it works better for me to say ‘I am fine’, and then they worry.

But two days ago something interesting happened. I panicked and I was sure I was dying and would not make it through the night, and this was too real to be funny. I did what I hardly ever do, and I asked my neighbor to come over and check on me.

So, she comes in and walks upstairs where i was ‘dying’ in bed. She looks at me carefully and asks me to show her what is wrong and I did.

She then tells me that I am fine. That she was prepared to drive me to the ER but that she is sure I am fine. “You have the flu, my dear” and is petting my back. and yes, i can see what you are showing me but you are not dying, all this with total authority.

And, although normally I would have hated her for anything like this, she cured me in those several minutes, and my panic ceased.

I ended up walking her back to her house and was so grateful, because she was right.

She is still taking me to the doctor on monday, and it’s not that she thinks all is well, or doesn’t take me seriously. But it was the panic that made the way I felt so lethal, and even if it’s something serious, I am not dying this moment.

This is an excellent topic! Thanks for starting it.

I have Sarcoidosis that has gotten significantly worse over the past 8 months since Medicare Part D has refused to cover an important medication. I cannot afford it out of pocket and have had to appeal the decision several times so far. I’ve written numerous people including President Obama and so far do not have a suitable resolution. Meanwhile my condition has been plummeting. I am also running into delays in a test crucial in identifying the latest complication of my disease, much of which I am handling alone at a time when I really don’t feel up to the legwork involved.

As things became really serious I encountered alot of denial from people in my life. This has taken various forms including the kind of thing mentioned above (people saying they think I’ll be fine, that the doctors’ opinions may be wrong, and that maybe if I just rest for a few days it will “go away”, to making pre-emptive statements about what the person can’t or doesn’t want to take the time to do for me (just in case I should ask them at some point). These same people began pointing fingers at each other “Have her do it”, and the other said “Have her do it.” I told the two people who were making these pre-emptive statements that I didn’t like feeling like a hot potato and this didn’t make me feel loved, but instead made me feel scared that I would not get what I need at a most critical time. When people give off those messages it makes it all that harder to ask them for anything.

I can relate to what others are saying regarding the intentions behind the words. I had a 3rd friend who does not live in my state and logistically can’t do things like take me to doctor’s appointments, stay with me during major tests, or house-sit and take care of my dog if I have to go into the hospital, and go grocery shopping for me, but that friend said to me that she wishes she lived within driving distance to do those things. Although I still need those things, it was somewhat comforting and meant alot to know that this particular friend would be willing to do these things and didn’t view that as a burden.

I do wish that more people would not run for the hills when somebody in their life gets ill and that they would learn to deal with these issues in healthier ways.

The scariest thing in the world to someone who is critically ill is the fear of losing one’s support system and the suffering that results on so many levels.

Regardless of what your opinion is on the origin of chronic disease, it seems as though sick people are receiving mixed messages from the experts they trust.

It has been shown in research and in practice that good nutrition, exercise, and avoiding behaviors of over consumption contribute to overall well-being. This is at least somewhat supported even after sifting out conventional wisdom and advertising campaigns disguised as health advice. The take home message is that we probably do have some control over our health.

However, if you believe that some people are “born into” their conditions, you share a rather timely opinion with the vast majority of the medical community. Research dollars, time, and effort are invested almost exclusively into furthering our understanding of the interplay between genes and disease.

Imagine an overworked middle aged man at a routine physical who has just learned that he has high triglycerides, high cholesterol, and high blood pressure. In addition, he was told that he is overweight and his HDL cholesterol is low. The doctor explains to this bewildered patient that he must change his diet, quit smoking, avoid alcohol, get more exercise, and reduce stress because he is already at risk for developing cardiovascular disease and must do everything he can to reduce this risk or he will suffer certain death of a heart attack. In general, heart disease is considered a lifestyle disease.

However, this man’s best friend of the same age, ethnicity, and socioeconomic status eats whatever he wants, smokes and drinks as much or as little as he likes, maintains a busy work schedule, and has a normal lipid profile. He is also of average weight and doesn’t exercise any more or less than anyone else they know.

Modern medicine’s answer to this? Some individuals are “genetically predisposed” to developing health problems, while others are not. In the above example, both men responded differently to very similar lifestyle choices.

So, it’s your fault, but it isn’t because it’s in your genes and you can’t help it anyway. Huh?

Living life with an autoimmune disease is a game of strategy. One must manipulate, circumvent, and outsmart every limitation and wisely utilize every asset on an almost constant basis. While this is the nature of life for almost every person, the reason why it is different for sick people is that they often have vastly more limitations than assets, and the world is not necessarily more forgiving because of it.

This confused manner of thinking that disease is both “your fault” and “not your fault” has thwarted our ability to treat the sick with kindness and patience they need. Instead, we often approach them with knee-jerk advice and tough love: “Stop doing this to yourself and snap out of it,” mixed with defeatist comments such as “you will just have to learn to live with it.” People even practice “disease discrimination” whereas mental illness and pain diseases often receive fewer accommodations than visible physical problems such as bone deformities or trendy, well-known diseases such as diabetes and bowel inflammation. Of course, most autoimmune disease sufferers have heard from others or said to themselves at some point, “…at least it isn’t cancer.”

All diseases have one thing in common. They suck. In the mind and heart of the sufferer, all diseases are created equal. Rather than requiring the victim to shoulder the blame, it would be better to say that disease is everyone’s fault and nobody’s fault. What lacks among us is a sense of mutual responsibility that would make kindness and patience a more automatic reaction to suffering, instead of the usual comments such as “Don’t bother me with your problems,” or “Snap out of it.” Treating people as though they are to blame for the diseases they were born with and can’t help anyway sends two very contradictory but equally defeating messages.

I don’t blame the consumer or the practitioner for being confused about how to attain health when most of them do not have the time or training to critically assess the complex and clumsy information they are given. I didn’t start to see it until I’d been through it a few hundred times myself. An easier way to say this is that not all doctors have been sick and not all of the sick are doctors.

Biology is cruel and random, and the only rule is that living things either eat or they are eaten and there are no exceptions. Pretending for a moment that the human race is a tribe, and that there are “alpha” and “beta” members, it may be understood that “genetic susceptibility” is not best illustrated by the discovery of a “colitis gene” or a “breast cancer gene” or an “asthma gene.” What leads someone to fall victim to a disease has more to do with small, incremental changes in their overall molecular construction that occur randomly, over a long period of time and either fortify or compromise an individual’s ability to defend itself.

Within a single ecosystem, a species may both become victimized itself as well as facilitate the development of disease in others by the choices it makes on a small scale that affect the large scale.

So, what control do we have? The best kind of medicine is the ability to fight back. Rather than developing a medical system that prevents symptoms and allows the sick to survive and produce sick offspring, the goal of medicine should be to learn how to optimize our defenses against the more likely causes of ill health such as pathogenic microbes and mutagens. As a society, we certainly have a way of discounting that which we cannot see and since there are no lions or dinosaurs chasing us, we imagine that nothing is preying on us. The control we do have is that we can try to win, and the control we don’t have is that not everybody will.

It is important to accept the possibility that we are not exceptional, because the rules of biology apply equally to all living things. It is also important to be patient. People, at the very least, live from birth until death and while it is not always possible for health and contentment to last the whole time, it is at least possible that kindness can.

This is an extremely helpful list, Elvira. Thanks for this!

As a heart attack survivor, I’ve had more experience being on the receiving end of well-meaning but unhelpful comments than I ever thought I’d have! I’ve also observed that most of us really want to do or say “the right thing”, so your list is useful in that it offers several practical options.

Especially interesting was people’s tendency to say “You look great!” – as if that has anything to do with anything! More on this at “You Look Great! And Other Things You Should Never Say To a Heart Patient” at http://myheartsisters.org/2009/06/01/you-look-great/

This normal human urge to say something comforting to “cheer up” the sick person can backfire in ways that may seem puzzling to the person saying the comments. We see this also in bereavement, when those who are grief-stricken are told “Well, at least YOU LOOK GREAT!” The statement says far more about the speaker than the listener, because it indicates the great relief of the speaker who may have been quite worried that the grieving person would be distraught, emotional or ‘different’, which would in turn make THEM feel awkward and uncomfortable!

Thanks again!

I would say, “I believe in prayer.. So I’ll keep on trying.” Or if she has recover from an illness, even a small one, I would say, “So prayers actually work after all.” Just a bit of something that I say to my friend who is prone to illness. I like her a lot too…