Friday, July 13, 2012

Helping Family Understand ME/CFS

A friend e-mailed me earlier this week about how she was both looking forward to and dreading a vacation with extended family.  She said her family just didn’t understand how disabled she was by CFS.  This got me thinking about my own early difficulties with my family, so I thought I’d share some of those experiences as well as some insights that I’ve gained after 10 years of illness.  I know now that many of those early problems were based in good intentions and misunderstandings.

Like my friend and most people with ME/CFS, I felt as though my family didn’t understand what I was going through in those early years.  In fact, throughout those early years – the first undiagnosed one and the ones that followed it – I mostly felt utterly abandoned by my extended family.  Not only did they not understand how disabled I was, but it also seemed like they were intent on ignoring my illness all together!  I was stunned – and hurt – when we got together with my family, and everyone acted like everything was just fine.  Couldn’t they see how sick I was and how dramatically my life had changed?  Did they not believe me?  And when we weren’t together (none of my family lives nearby), it seemed that they had completely forgotten about me – no phone calls, no letter or cards, not even an e-mail to ask how I was doing.  I was deeply, deeply hurt.

I hit bottom, both emotionally and physically, during a family vacation in the Adirondacks.  My husband, Ken, and I knew it was going to be too much for me, but we let ourselves get talked into it. The trip turned out even worse than we’d anticipated.  The exertion and stress sent me into the worst crash I’d ever experienced (before or since), I had to spend most of my week closed up in my bedroom, and my family seemed (to me) to just ignore my suffering and pretend everything was OK.

That was the final straw for me.  I couldn’t believe that my family could be so cold and uncaring.  We’d always had a close, loving family, and I was stunned that they weren’t there for me when I needed them most.  How could they just abandon me like that?

Later, in hindsight and after much thought, I realized that I misinterpreted their actions.  It wasn’t that they had stopped loving me; in fact, it was just the opposite.  The all loved me so much that they just could not accept that I could possibly be that sick.  They were all in deep denial about my illness, trying to convince themselves that my illness was not serious and that nothing had changed.  In addition, they misinterpreted the way I acted when severely ill as depression and believed that what was best for me was to help me “get my mind off” my illness by not focusing on it.  Once I understood this, I could begin to forgive them, though it was a slow, gradual process.

Today, things are much better between me and my family.  Most of them now do understand that I have CFS, that it is a serious illness, and that it is not going away.  Though some of them still feel a bit uncomfortable with the fact that I am chronically ill, they do their best to be kind and supportive to me.  For my part, I try to be honest about my illness and its effects without focusing too much on it.  They now understand I need to nap every day, they can tell when I’m not feeling well, and they will even ask how I am doing occasionally.

So, how did we get to this new and improved state?  Well, again, it was a very slow, gradual process.  I think what helped the most was finally turning my mother around because she has a lot of influence with the rest of the family.  Because I didn’t seem to be getting through to her by talking, I wrote her a six-page letter.  In it, I explained what my life with CFS is like, how I perceived the way my family treated me, and how their actions really affected me.  I tried to emphasize that I understood they thought they were acting in my best interests.  I said that I thought they believed these things:
·      “the best thing for me is to keep my mind off my illness
·      I am consumed with thoughts of illness and focus too much on it
·      talking to me about my illness, how I’m feeling, etc. will only make me focus on it more
·      I am depressed a lot because of my illness”

And then, I explained:

“From my perspective, when I’m with you & the rest of the family, I feel as though you won’t acknowledge what I’m going through.  I feel as though everyone is pretending that everything is just fine.  What you describe as “walking on eggshells,” I experience as a form of denial, that no one will just look me in the eye and acknowledge that I feel very sick.  The worse I feel, the more I feel ignored and invisible.

I want to emphasize that I’m not looking for pity or coddling.  I don’t expect my illness to ruin everyone else’s good time or force everyone to express sadness.  All I want – and need – is simple honesty and acknowledgement.”

I also explained why it was so difficult for me to spend time with other people:  “Stress and exertion come in all sorts of forms: physical, emotional, mental, social.  Even “good stress,” like excitement and joy, release certain stress hormones that my body can’t handle the way a healthy person can.  Any kind of social interaction is exhausting for me.  When I’ve tried to explain to you how much it wears me out to spend time with the family, you tend to take it personally.  But it’s not personal at all.  I respond the same way to social interaction with friends.”

I realized that my mother thought I was depressed and that she had to cheer me up.  I think this may be true for many of our family members.  They see us feeling so sick, and they misinterpret our distress for depression or even anger or a bad attitude.  

Finally, I enclosed a copy of a chapter from a book on CFS that I thought did a good job of explaining what life with CFS is really like.

To my mother’s credit, that letter sparked a major change, which then carried over to the rest of the family (I knew it was she telling the rest of the family not to focus on my illness and to “help me” get my mind off it).  My mother actually sought out a therapist who specialized in helping families of chronically ill people.  I think she finally read some of the information I’d been sending over the years about CFS.  And she changed her attitude and the way she treated me dramatically.  Eventually, that led to changes in the way the rest of the family treated me also.

I think it’s important to be honest with our families about how ME/CFS affects us, especially how we respond to social interaction.  I have also tried to share information with family (and friends) about what CFS is and what its symptoms are.  As in my case, helping our families to understand what we truly need can be a lengthy and painful process, but I do believe it is worthwhile in the end.  I feel as if I lost my family for a while there, but I have them back now.

What have your experiences been with your family?



Renee said...

What a good description of what it is like for everyone involved and what hope it gives to others who are looking for healing and understanding with their families regarding their illnesses....I found my illnesses were not taken very serious until I was diagnosed with Lyme and then it was, Oh take a pill and get well then. Some family members knew I was sick with CFS/ME before the Lyme came into play, but felt I should have just pushed more and done more and not "given up" on getting well. Others thought I had mental health issues causing the physical problems. Our daughter told Joel she never thought I was "really sick" because sometimes I could do things and other times I could not. She felt I was just depressed or had an anxiety disorder. We have never discussed it. Our children as a whole have worked very hard to make sure they do not tire out when they come to visit or stay. They bring foods, they take over cooking and they limit their stays. They talk among themselves to make sure things go as planned and when they all come they stay in hotels and leave by a certain time of night so that we get more rest. Sometimes they go places in the afternoons too so naps could take place. Extended family has limited contact with me in person so it has not been an issue for several years. Now we are trying to see them since I have improved.
I am close to rambling now so will sign off...Great post to ponder Sue.

Anonymous said...

Sue and Renee this is sooo true ! I feel like you have both described my life and family . I've been battling this illness since 2007 and maybe even before, but diagnosed in 2009. My family tried to be supportive and will say they understand and believe me, but it's the actions and words that tell me they do not understand. I really don't think they ever will or even care too truly understand. I don't think it's fault of their own either, I really think its not in their capability to understand because they have no schemata to relate to it, I mean they have no knowledge to begin to connect to an understanding of what we go through on a daily basis. I know that my family has been told time and time again that I have an illness. But, they still say things like oh you need to get out more, you need to pray about it, as if I don't, or they will constantly ask me to do and participate in things when they already know I'm sick. It lets me know that even though they say oh, I understand, it's no way they understand or they wouldn't ask and say things that they do. Any other thing is my family always ask how I'm feeling but it's oh well maybe you'd feel better if you... Followed by a bunch of stuff that if that would cure me and make feel better I'd have done it 7 years ago. I'm just to the point that I almost wish I could live alone on a deserted island somewhere. If it was just family I might better be able to cope but I get this reaction from family, friends, and the medical community and so it's almost like there is no where to turn and have true validation and understanding. I'm just do frustrated and almost angry with the whole situation. I'm sorry to ramble on but I just don't know how much more of this I can take!!!! Thanks for listening

Baffled said...

I am only in year two of CFS so things are still in the early stages. My sis and Mom are great. They get it. My sis tried to "fix" me for a while sending me magnets and pills and telling me to think happy thoughts (power of positive thinking) but she is over that. My Mom knows that I'm doing the best I can and am trying and using drugs and supplements and keep the ones that work for me. Neither of them send me advice anymore. I was never insulted by this however. I always saw these acts as acts of love. They wanted to help and didn't know how.

My brother on the other hand completely ignores the illness and even ignores me. I don't hear from him at all. Last June was the first time I saw him in person in two years and it was my sister that invited him over as a surprise for my son's graduation. His wife asked about me and my illness but my brother talked with others there instead. I honestly don't remember any interaction past "hello". I'm really angry at him and don't have the energy to sort it all out so I'm ignoring him right back. Not the mature thing to do but it works for me right now.

hkd said...

Sue - please stop reading my mind - its getting kind of creepy!! lol - i am extremely blessed that my parents have never wavered one second on their understanding and support especially since it has been so difficult on them to watch their intelligent, motivated daughter struggle day to day - and i have a handful of close friends that are the same - however, there are still those that despite all the information just seem unwilling to process the chronic in the chronic fatigue -also i feel i can't win if i say i'm not doing well i'm complaining and if i don't say something then they don't know...i know how hard it is for me to understand i am living it - patience - and sometimes just letting go - thanks for the great post!

Kerry Dustin said...

Sue, I can absolutely hear what you're saying. Many years ago now (1995; I first got sick in 1990) I wrote a letter to my family to try to explain because I was feeling very like you mention. It helped a lot, so that I actually put it up online so that it's there if it ever might help anyone else. I hasn't been updated since 2008. That son is now 8 and has ADHD so he keeps me pretty busy.

Cheryl said...

I really relate to this post Sue! I don't want family members to focus on my illness or pity me, but I do want them to understand how unwell I actually am. I live 6 hours drive from my family so they don't see me on a day-to-day basis to fully appreciate my symptoms. I guess I'm guilty of trying to hide how tired/ill I am when I see them. I think writing a letter (or email!) to a relative who doesn't understand is a great idea...I'm visiting my family next week actually & I might drop my dad an email before I go!

Keena said...

My husbands family is kind and understanding. However, my brother and his wife think that I am faking at being ill. They were actually shocked when I told them that I received disability b/c I was not longer able to function at my former job. I cannot even talk about my illness or how it affects me b/c they say I focus on it too much. My mom has CFS as well and we both try to encourage each other, and of course my husband is great. Although some times, he gets a little overprotective when it comes to my health. At least he doesnt ignore it or think that I am faking. Sue, thanks for sharing and I enjoy reading your blog when I get the chance. Take Care

At Home on the Rock... said...

Great post! I think the key is when you said we simply need acknowledgement from our families. I have found the same as you -- people act like I'm not sick and everything is just fine. Very hurtful. I have said over and over I'm not looking for pity...just understanding that I AM sick.

upnorth said...

Like anonymous says, I think sometimes you read my mind. This could be my post except most my family haven't come around. And while they say emphatically that they understand that I am physically "ill", their words and deeds don't show it. I have given up for the most part, because I came to terms with the fact that you can't make anyone think anything. But like you, my mom came around to a certain degree after I gave her "A sudden illness" by Laura Hillenbrand. That really helped not only for her to see how sick I was, but also give us a means/opening to talk about it. Family is so complicated and there are several mental illnesses in my family which has made it even harder for them to treat this like a physical illness. But especially my parents are really supportive of letting me rest lots and not overdo when they come.....My brother and sister and law, when I see them and my niece and nephew I always overdo and crash....and they seem to jus roll their eyes (at least my sister and law who didn't know me "before")....thanks for this post Sue, like Renee, I'll just opened a can of worms in a way.

Faith Newton said...

You are absolutely correct. They think if they ignore you and the disease, it will go away or it is not real. I think the most hurtful remark I've heard is give him a Coke; he'll get over it.

Sue Jackson said...

Wow, so many wonderful comments...and sad bur familiar stories!

I do think that most of our family members have good intentions. It was a real eye-opener for me when I realized my mother was mistaking my "sick face" for anger and depression. She really thought that she was doing what's best for me by "keeping my mind off it" and cheering me up...which of course, I experienced as dismissal.

I'm sorry for those of you who still have family members who don't get it. My sister is in that category. I've noticed though that much of it is denial with her - she responds to other crises in a similar way - just be cheery and pretend everything is OK - so I try not to take it personally. Oddly enough, with her there also seems to be a bit of jealousy - I know that sounds insane, but I guess it's a deep-seated sibling thing. I sometimes get the feeling she thinks I am acting sicker than I am for attention. HA! I'm sure you all feel the same way that I do - I am so sick of being sick that I would NEVER pretend to be sick. Mostly, though, I think it is still denial with her - "if I ignore it, it will go away."

Great discussions here - thanks for sharing your stories!!


Unknown said...

Hi Sue, I'm new to following your blog but thank you so much for writing it and sharing your struggles. I am new to this, still haven't been diagnosed but I'm pretty sure I have CFS. Right now I'm trying to find a doc who knows something about CFS to confirm my suspicions, as I am sure you know this can be difficult! My family has been pretty supportive but I don't think they have any idea how hard things are since I "look fine" and am relatively young (44). My sister lives out of town and visits just a few times each year, she knows I am "fatigued" but that is about all. I also am guilty of trying to hide how sick I am from my elderly parents as I don't want to worry them. To top it off I have two younger children, 8 and 10 who I also do not want worrying about their mom. As I write this I realize how overwhelming this all is, any advice or suggestions I would be grateful!

Renee said...

I agree with you Sue.....I think our families mostly have the best of intentions. I do think we often look depressed instead of sick due to the effort it takes at times to do anything...especially visiting. Not taking it personal is such good advice, Sue. Great post and good disscussion..

Sue Jackson said...

Hi, Kathy, and welcome to my blog! I am glad you found it but sorry to hear that you probably have CFS. I can try to help you find a doctor nearby who understands CFS. First, try the databases in this post:

If that doesn't work, feel free to e-mail me (click on my profile, then on the e-mail me button) and tell me where you live, and I can try to help.

As for your family, I can only speak from my own experience. I find it easiest to be honest with the people around me. Trying to keep such a big secret only adds stress which makes me sicker. As for your kids, there is even a silver lining. Kids with a sick parent tend to grow up with plenty of empathy and a strong sense of caring.


Georgia said...

I first started getting sick when I was about 9 years old (vaccines, we think). I was still able to go to school - I loved school, I was great in class as well as in sports, did debating and was in the choir - but started missing more and more school. Doctors decided it was either the flu or I was faking it, the new principal called me a truant in my last year at primary school.
Things started getting hard when I started high school. I got much more sick, especially after being on a course of antibiotics, but still had no clue what was wrong with me. My parents and I fought a lot, as they've always been "get up and get on with it" kind of people, and hey didn't believe me. We screamed at each other. I remember sobbing over a maths textbook because I just couldn't do the homework that was set.
Eventually, we came across CFS and looked it up - it fit. It took over a year, closer to two, before I got a diagnosis. I'm way behind at school (and I'm enrolled in the Health School - I've got an ex-science teacher who is hopeless at maths but is great at helping me plan which courses and credits to go for, and she can come to my house for a lesson if I'm too sick to go into town. It's always funny when she tries to give a maths lesson), which, not so long ago, would have horrified both me and my parents, but not so much anymore.
My mum's side of the family is great. Her parents and one of her two sisters live in the same town (actually, her parents live over the back fence), and they're all great. They understand that I'm sick and don't question it if I say I can't do something. It's not that surprising, considering that my grandma has known several other people with CFS. Now, my cousin on that side is sick after having Glandular Fever, and it's a very real possibility that she may get CFS. We're doing our best to help her and her family avoid what we suffered through, though her dad's attitude to the entire thing isn't helping.
My dad's family, on the other hand, is hopeless. His mother has something wrong with her memory that she's too afraid to go to the doctor for (though she really needs to) and asks all the time, often up to three times a phone call, if I'm better yet. We avoid his twin sisters' questions. One of his sisters asks how I am all the time, then tells me that "it's mind over matter, and if anyone can use their mind to its full potential, it's you." His other sister is pretty much the same, but at least she doesn't seem to be accusing us of anything when she asks us why I have a walking stick.
I'll be seventeen in a couple of days. One of my cousins and I shared a birthday party, since his is only 19 days before mine (same year, too). It was a quiet family affair, complete with gluten free cake for me (and for my Glandular Fever cousin, birthday cousin's sister, to complain about). We also find out whether or not my mother has cancer in a couple of days. She thinks it might ruin my birthday, but I told her not to worry about that. A birthday is just a number and a date. We've had a fair bit of bad luck when it comes to illnesses, but it's made all of us on my mother's side closer as a family.

Annie said...

Great post as always Sue. Roll on the day when society is truly educated about the nature of this illness. You are certainly helping to spread the word. I can only imagine how difficult it was for you and IMO you took the right path of trying to see it through their eyes so that you could work out what was going on.

Anonymous said...

Great post Sue! I recently had an ephiphany when my mother told me she thought I would crash and then completely recover! I never realized that she didn't know I wasn't recovering completely in between the crashes! I was stunned.

Anonymous said...

I just stumbled upon this site from a cross search at Google for Bartonella. I had been misdiagnosed with fibromyalgia, CFS, lupus, MS, bipolar and you name it. They were all wrong.

Turns out I had lyme but 2 other tick-borne infections and 2 other chronic stealth infections, Cpn and HHV-6. Possibly mycoplasma but testing was done at the wrong lab in the wrong way.

I hope the links here can be of help to those trying to get the the bottom of what might be causing CFS, for them. It is good to consider a full range of stealth infections, starting with lyme, assessed only by a

lyme literate ILADS-educated Doctor. Most doctors don't do the right tests in the right way. Tests cannot tell us everything, though. Scroll down for two links. Hope they help.;f=2;t=015508;p=0

Diagnosing Lyme Disease (&/or whatever else is going on)

Other tick-borne infections and other chronic stealth infections - as well as certain conditions - that can hold us back.;f=2;t=013239;p=0

(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation.

Anonymous said...

My mum has cfs, I would like to understand more about it. How I can help her. What it feels like. To try and make her understand it effects me too.

Sue Jackson said...

I'm so sorry about your mother - I do know that her illness affects you, too, because my son is also ill. It's wonderful that you are trying to better understand her.

I was going to link to other blog posts about my experiences, but I think the absolute best thing you can do is to just talk to your mom. You obviously have a great attitude - Tell her exactly what you said here - that you want to better understand her illness and how you can help her, but that it also affects you, too.

I have found that most relationship problems stem from simply not talking enough - holding in feelings and letting them fester. Open the lines of communication with your mum and show her that you want to understand and help - and help her to understand your side of it, too.

Good luck and let me know if you need any other help.

And here's a Facebook group for Carers of those with ME/CFS & FM - maybe that would help you and other family members in the house.

Best -


Anonymous said...

Thank you so much for sharing this story with others who face the same challenges. Battling the illness is bad enough, but when you have no support from family or constant criticism, it's really hurtful.

I've lived among well-intentioned friends and family who tell me that I'll feel better if only I take more walks, eat better, exercise a little, take this new supplement, etc. It's insulting that they think I haven't done all I can to improve my health. I was once a vital, fit, happy, positive go-getter, but all of this sudden they think I like lying in bed all the time? It's maddening.

As a community of CFS victims, we must continue to educate others and fight for recognition from the medical community. Yes, we are victims, but we don't have to be defined by the word. We are also fighters, survivors, warriors.

Thank you to all who posted here. May you find comfort and relief and may we all be blessed with a cure one day in the near future.

Sue Jackson said...

Thank you so much for taking the time to leave a comment and be a part of this important discussion.

You are right - it feels insulting when friends & family make these kinds of ridiculous suggestions (my own mother told me my first year of illness that I just needed to get outside more and take vitamins!).

BUT, as you say yourself in your comment, please try to remember that they are well-intentioned. In my experience, these kinds of insulting comments come from a place of helplessness - our friends & family love us & want so badly to be able to help, but they feel helpless. So, they offer these kinds of silly suggestions - they probably even realize they are silly, but they just don't know what to say or do. They are as frustrated by this debilitating illness as you are.

We can fight for awareness & try to educate others while also loving our family & friends & forgiving them for these insulting comments made out of helplessness. Better relationships with less stress actually help us physically, too!

I hope you understand that I am not meaning to lecture you or sound like a know-it-all - instead, I speak from experience and some very deep hurts that have taken me years (and lots of therapy!) to recover from - and I still struggle with resentment. But I think it is a struggle worth continuing, for the sake of our relationships.

Thanks for taking the time to comment and for sharing your experiences!