Note: In November 2018 I was diagnosed with severe Obstructive Sleep Apnea.Check my most recent posts on sleep apnea.
Today’s case in point was my sister. We had an argument over MSN this morning, which started with her well-intentioned advice to help me get better. It consisted essentially of “get out more, and be less self-focused”. In her mind, I’m ill because I stay at home. So I need to get out more and do things for other people. In my reality, I stay at home when I’m exhausted and need to rest. I feel much, much worse when I ignore what my body is telling me and push myself to go out when I’m not feeling well.
The subtle sub-theme is that I’m selfish because I do things that I like, and I don’t do enough things for other people. That really pisses me off, partly because it’s not true, but mostly because it belies a total misunderstanding of who I am. My sister barely spends any time with me, and judges me negatively on things she doesn’t even know about. It leaves me to justify the things I do that make me a good person. I hate that bullshit. We are not good because of what we do, or what we believe. We just are.
This pushes my buttons because my family uses pathetic excuses to avoid actually acknowledging their feelings or anyone else’s. This leads to a lack of empathy and a stubborn refusal to see anyone’s point of view but their own. I don’t want to recount the whole argument, but it was clear that to my sister, understanding another person and how they feel just isn’t important. And frankly, that gives me the shits. Being understood is a very basic human need; I’m not the only one with it, but if you were to talk to people in my family, you’d think I had some sort of problem for wanting understanding instead of unhelpful “advice”. I don’t really mind people giving me advice that I find unhelpful; it’s their reaction when I point out that there are good reasons why what they are suggesting is counter-productive that annoys me. They get on their self-righteous hobby-horse and start making out like I’m a bad person because I’m ill. This is one reason Christian-bible-based religious sects give me the shits. Surely we’ve moved on in our understanding of illness in the 21st century can acknowledge that sick people aren’t necessarily sick because they’re doing the wrong thing. That attitude is just tailor-made for hitting my buttons.
I think my inability to express my anger, and the lack of empathy and understanding I’ve received from my family my whole life, and their invalidation of my sensitivity, are probably the root cause of the stress that I feel. If the amygdala theory is correct, then this is a major contributor to why I’m ill. Not the fact that I stay home and rest when I’m exhausted! I was quite proud of myself for telling my sister to “fuck off” when she was piling on the guilt-inducing nonsense. I don’t need more of that bullshit. Perhaps one day I’ll be thanking her for giving me the opportunity to act more assertively in the face of her misguided judgementalism.
Thanks for the opportunity to vent…
If you found this helpful, please send me a donation via PayPal to say "Thanks!"
6 Comments
marrk · April 14, 2010 at 12:34 PM
Graham, just sent them those statments by one of the best ME/CFIDS Drs. This is not invisible ilness, if you have done your cytokines/interleukines pannel they would be way off and abnormal just like a test for lupus MS etc. they would be sky high elevated..
A Few Physician Quotes
“CFIDS patients experienced far greater ‘functional severity’ than the studied patients with heart disease, virtually all types of cancer, and all other chronic illnesses.” – Dr. Daniel Peterson, M.D.
“To understand CFIDS would be to understand all of medicine…I cannot think of a better description of CFIDS. Virtually every organ system is involved.” – Dr. David Bell, M.D.
“The CFIDS patient “feels every day significantly the same way an AIDS patient feels two months before death.” – Dr. Mark Loveless, M.D.
Graham · April 14, 2010 at 5:37 PM
Yeah… not sure how I feel about that. At least it’s a reminder that I haven’t gone crazy!
Elaine Stammers · April 8, 2010 at 8:37 AM
Oh dearie me. Yes, they do “fuck you up your mum and dad” as Philip Larkin so eloquently put it – and your sisters and brothers too. Still they keep the psychotherapists in plenty of work.
Yes I have told my brother to stop prattling his sanctimonious stuff at me when I had a rare row with my mother. Actually he has stopped now. Only took 50 odd years so maybe your sister will get there in the end when wisdom takes hold (if rather).
Sister in law hasn’t got there yet unfortunately (husband’s sister) – she seems to be getting worse in old age. She clearly thinks I am a waste of space re the ME/CFS along with her useless brother (my husband) as he only writes poetry and doesn’t do proper work any more.
Graham · April 8, 2010 at 10:16 AM
Well the real problem with my sister ultimately is that she had the same parents I did. Empathy just doesn’t exist in our family; it’s seen as pandering to another person’s immaturity. Plus they have no experience of showing it, so they don’t know how even when they want to. So it’s judgementalism instead, which pisses me off. I think they may be in for a rough ride as my acting course is all about validating and expressing emotions, including the anger that I’ve repressed most of my life. I feel like smashing something…
Elaine Stammers · April 8, 2010 at 5:49 PM
The trouble is too that even though we don’t want to care about these kind of people (after all if you had an encounter with them in the street you would not give them the time of day), BECAUSE they are your kin then ultimately you are wounded more by them and their attitudes, as we feel that they should understand us.
As you say, your sister has been damaged too by her upbringing but is dealing with it differently (or not dealing with it in a creative way but perpetuating the damage).
I presume you don’t live in the same house as them still?Hope not anyway for the sake of your future health.
I have some of the same kind of wretched worst kind of religious stuff in my background which mercifully I have freed myself from. In my case I was not brought up with it though, I kind of inherited it with marrying my husband plus his family, and my brother too had found the same stuff. Thankfully ageing sometimes brings a bit more balance to the fundamentalist slant (had done for my brother).
As for my husband – well he was actually a Christian priest for a while many years back and was very into fundamentalist type Christianity! He had to become a pagan to free himself from the bad side of it but is now more interested in the psychological side of things and writing insightful poetry. It takes a lifetime sometimes to get free, but you have started early which is a good sign!
I think fundamentalist religions are a sort of way of dealing with the fear mechanism which is in all of us, but not a healthy way of course.
Lee Lee · April 6, 2010 at 7:31 PM
I had the exact same experience today (and have had several times in the past). A good friend sent me this passage to give to my family and friends and I think it says everything I needed to but better than I could. I hope it help you:
Having an invisible disability (ID) and/or invisible chronic illness (ICI) means that many things change. Just because you can’t see the changes doesn’t mean they aren’t real.
Most people don’t understand much about these disabilities/diseases and their effects, and of those that think they know, many are actually mis-informed. In the spirit of informing those who wish to understand …
… These are the things that I would like you to understand about me before you judge me…
Please understand that being disabled/sick doesn’t mean I’m not still a human being. I have to spend most of my day being very careful what I do, and if you visit I might not seem like much fun to be with, but I’m still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.
Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker that ever. Please, don’t say, “Oh, you’re sounding better!”. I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome
Please understand that being able to stand up for five minutes, doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing that five minutes has exhausted my resources and I’ll need to recover – imagine an athlete after a race. They couldn’t repeat that feat right away either.
Please repeat the above paragraph substituting, “sitting up”, “walking”, “thinking”, “being sociable” and so on … it applies to everything that I do.
Please understand that the effects of chronic illnesses and many disabilities are variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the bathroom and back, while the next day I’ll have trouble sitting up. Please don’t attack me when I’m worse by saying, “But you did it before!”. If you want me to do something, ask if I can and I’ll tell you.
Similarly, my illness/disability may vary suddenly, meaning I may need to cancel an invitation at the last minute, if this happens please do not take it personally.
Please understand that “getting out and doing things” does not make me feel better, and can often make me worse. Chronic illnesses/disabilities may cause a secondary/reactive depression (wouldn’t you get depressed if you were stuck in bed 23 hours a day for years on end?) but they are not caused by depression. Telling me that I need some fresh air and exercise is not correct and probably not appreciated – if I could possibly do it that, I would.
Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m doing something else more exciting. Illnesses and disabilities do not forgive their victims easily.
Please understand that I can’t spend all of my energy trying to get well from my incurable chronic illness/disability. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But an important part of having a chronic illness or disability is coming to the realization that you have to spend energy on having a life while you’re sick/disabled. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness/disability.
If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought; and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with a certain illness or disability then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with similar and different chronic illnesses and disabilities, if something worked we would know about it.
If after reading that, you still want to suggest a cure, then do it if you must. Preferably in writing and accompanied by the scientific papers that prove it works. But don’t expect me to rush out and try it. I might not even reply. If I haven’t had it or something like it suggested before, and it sounds reasonable, I’ll probably take what you said and discuss it with my doctor.
Please understand that getting better from an illness can be very slow. And getting better from an invisible disability might not happen at all. People with chronic illnesses have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out, if it ever happens.
I depend on you – people who are able-bodied – for many things.
But most importantly, I need you to understand me.