Other people not believing in chronic fatige.

CathyMoran

Mods, am not sure if this is the right forum please move if necessary.

Both my husband and I have chronic fatige from several healt issues - people believe my husband but I am accused of being lazy (am also pregnant at the moment). I had a total oesophagectomy almost 4 years ago (4 years on Wednesday), as a result I have problems eating enough, am supposed to graze all the time but that does not go well with the type 1 diabetes that I also have. I am very greatful that I had the surgery but I am still in constant pain from it but am not taking pain killers (it is not that bad as long as I do not lift heavy things), I also can not be very active just after food. Because I am the woman in the house I am supposed to do all the house work for my husband (as it happens my husband is my carer and does the housework). I also have an underactive thyroid (that was more underactive recently but it was picked up). I also have sarcoidosis.

I have a wonderful husband who is very supportive, especially as he understands chronic fatigue but veryone expects me to me totally fine after the surgery I had.

In general how do people cope with fatigue? Do many people not believe them? I know that before I got ill I found it hard to understand it in my husband so I am horribly guilty of that. My husband and I work around things - our house is not dust free, we do not go out in the evening but go out for a lunch at the weekend if we are "going out".

nesf

I get the lazy comment about chronic depressive phases due to bipolar. You'll face ignorance and lack of understanding about any disability that can't be "seen."

i.e. if I was in a wheelchair no one would doubt I couldn't reach high shelves etc but as soon as it becomes "mental" or "hidden" people start trying to understand it from their perspective and if you've never suffered true fatigue due to an illness or depression/mania/mixed state/whatever you'll never be able to fully grasp what its like unless you spend a lot of time around a person suffering the condition.

I have no answer for you I'm afraid. I've family members who still don't get it despite me going through 15 years of symptoms and 10 years of medication for the illness etc.

star-pants

Agree with Nesf - some people find things harder to believe if there's no visible physical symptoms. Tiredness, chronic fatigue, chronic pain can all be invisible to others unless you mention it. I have fibromyalgia and there are still a lot of people who think it's all in your head which isn't nice, or that it's not a real condition. It is, and a lot of people suffer with it. Even look how long it can take for some people to be diagnosed or even listened to by doctors. I've had this for 16 years but only diagnosed about 3 or so years ago after persistence.

I could go weeks with really crap sleep amongst other things, and you still have to get yourself up and do chores or whatever needs doing. People don't always understand when you say you can't go out, because even the effort required in getting ready and the thoughts of the energy needed puts you off.

Some people will understand, and some people will just never understand. You're lucky Cathy in the sense that you have a husband that understands how you feel and vice versa so you aren't made to feel guilty for being tired or unwell. Some of my friends understand, some of them I don't think realllly believe me.
My mother suffers RA & FM so she'd be very tired a lot of the time too, but still runs her household. So in our family it's understood to a degree but there's also a 'get on with it' attitude which isn't always easy. I'm lucky that I have a supportive boyfriend who gets when I'm shattered or unwell etc.

It's hard not to care about what other people think, as you say people seem to believe your husband but not you, which is unfair. And that puts pressure on you to do more when you shouldn't have to. There are times when I just won't say anything because either I don't want people to think I'm moaning or because I feel they'll think I'm making excuses. But there are other times when you just say to yourself, you know what? I'm not well and sod it if people don't believe me. There will always be people who won't believe what they cannot see.

Bidd

I have had Chronic Pain for 13 years-Neuropathic pain in my upper back and which has now progressed into my neck and left arm. I have also been diagnosed with Fibromyalgia and Chronic Fatigue Syndrome.

The pain has got worse along with the Fibro/CFS in the last few years. Every time I have had surgery (including a failed SCS among other interventions) to try and control the Neuropathic pain it exasperates the Fibro/CFS. I had pneumonia early last year and still feel as fatigued as I did when I was ill. My husband who works fulltime is now also my carer. He does everything. My children (who have "grown up" with my condition) also know my limitations. Of course I have feelings of guilt over this as well as feeling "why me" etc. Who wouldn't?? I am now completely housebound-other than visits to my Pain Consultant.

But to look at me you wouldn't think there was anything wrong with me. Do other people put pressure on me to do things? No, I have explained to those that matter and they understand. Those that don't? There are those that don't want to know-for whatever reason-and there are those that think they "get it" but really don't. Well, I don't dwell on it anymore. I know what is wrong with me, I know what I can and can't do eg it is a good day if I can have a shower! I used to put pressure on myself to do things but not anymore. That was a lesson hard learned.

I don't know if I have answered your question Cathy but feel free to PM me if you wish.

B x

LucyBliss

I've suffered from bouts of pure fatigue from Crohns. I'd get up, go to work, come home, go to bed, sleep my brains out and then get up and go to work all over again back in the day. I used to be severely fatigued after Infliximab infusions.
I go for cranial sacral therapy sessions to help deal with it. I find it very beneficial. I've been going since 2004 and it helped me during my bad crohns flare years, sometimes it was more a mental lift than anything else. Also, my therapist is very helpful and nice and she always says you have to listen to the signals your body is giving you. So if you can't do something at a certain point, then don't do it.

My take on it is that there are judgemental people wherever you go, whether it's about the way you're training your dog, rearing your child, buying your groceries, whatever so I try not to bother with what they think too much.

CathyMoran, yikes! You have really been through the wringer in the past. I hope your pregnancy is going well.

Aishae

in my teens i had people screaming abuse at me in shops - cos i was standard in their way and 'like an ignorant teenager' i didnt listen, move or acknowledge them - i was even rammed with a trolly by old ladies a couple of times, as i was in their way. didnt occur to anyone i might not hear them. even though they dont encounter deafness much its not uncommon to comne across hard of hearing (im completely deaf)
ive been in pain since i was 13 - at first it was one leg. didnt affect me too much till i was 19. it got so bad i couldnt not take pain meds... at 22 it started getting really debilitating but alll this time id give up a seat on a bus to an old lady or that - if i felt i just couldnt stand i got very nasty looks and theyd point to the disabled/edlerly/infirm sign. i already have no balance so adding the pain made it very hard to stand on a moving bus. having people just bash into you when you were out and all sorts..... cos people couldnt see that i couldnt even walk well anymore. i was used to people thinking i was drunk. was even stopped by the police once when i was walking along - till i explained.
when i finally had to give in and start using a walking stick at 25 people started being more concientous and helpful. they wouldnt just walk into me in town.
then last year i had to start using a walking frame instead (aged 26) and things improved all the more with public understanding.

so you are soooooo right - if they cant see it, its not real. and if they see some symptom or tool like my roller then they start getting it.

my best coping mechanism used to be just get on with whatever it is i need to, and if a visitor who was spending a few days - for example - didnt understand why i just had to lie down for an hour or if i wasnt up to playing tour guide every day then feck that. a friend will get it.

Dizzyblonde

In my experience, people find it really hard to understand 'invisible' illnesses. If you have a broken leg people will rush to help and not judge you, but if you have something they don't understand they'll often decide that you're just lazy or putting it on.

I've had vestibular dysfunction for almost 19 years which means that I have feelings of false motion almost all the time. It doesn't sound like much of a problem but it affects everything I do and has changed my life completely in that I'm very limited and much more dependent than I'd ever have wanted to be. Busy places like shops etc are a nightmare for dizzy people, our symptoms get really bad with all the visual input. It's very hard for people to get a handle on unless they've experienced it though.

On the subject of others, I've found that it's best to tell people on a strict need-to-know basis. I only discuss my condition with those closest to me, because after all they're the only ones who care enough to actually support me.
I really feel for those of you who have chronic fatigue because some of my dizzy friends suffer with that too and I know how difficult it can make your life.

Cathy, I'm not sure if you've read The Spoon Theory. It was written by a woman with lupus, but it does help if you want to explain to someone how having a debilitating condition affects your daily life:

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

nesf

Dizzyblonde wrote: »

In my experience, people find it really hard to understand 'invisible' illnesses. If you have a broken leg people will rush to help and not judge you, but if you have something they don't understand they'll often decide that you're just lazy or putting it on.

Yeah had that experience recently, developed shingles during a depressive period and people were falling over themselves to help me and the wife because "you've a sick man in the house." We were staring at them going (to ourselves) this is minor, it's just some pain, it really is nothing compared to bipolar but no, you people just seem to ignore that exists for some reason.

LucyBliss

Oh that is so true. People really don't consider it an illness unless you are laid up in bed or look like you are about to be blown over by a puff of wind. Anything they can't see an actual physical symptom for is soon forgotten about.
It's why whenever I see a child acting out in a supermarket or an adult behaving a bit off, I don't immediately rush to condemn them for either being bold or freaky because I don't know what they're coping with in their lives. (However the kids who run riot in places while their parents blissfully ignore them, that's another story! ;-))

And it can be very difficult to explain to people that you want to go out and be active but your body just doesn't have that capability at the present time.

Aishae

my own fatigue comes and goes. its to do with all the tumours in my body and the surgery ive had (11 so far- 4 were on the brain) - and id say my meds are a factor. so some days i could be bouncing off the walls happily while other days i say 'i need to nap for an extra hour' and cant seem to find the energy to do much at all. so people dont understand that - even people closer to me, cos it sounds a bit odd.

i feel for anyone who has it all the time. i really couldnt imagine the frustration at other people but mainly the frustration with my own body. so fair play to anyone who gets on with it best they can like you guys.

CathyMoran

An update - have now been diagnosed as having anemia and am in the final trimester - I have several conditions that are known to cause extreme fatige but because it is chronic fatige I am just supposed to ignore it and get some exercise as sure that will fix it and it is all in my head...it has gone beyond a joke.

star-pants

Sorry to hear you're so tired. But at least you're almost there (With the pregnancy) and things are going well.
I know there's never much in the way of solutions, but you and your family are strong so you will get there. It is a case of mind over matter sometimes (not in the way some people/doctors say though), but in the sense of 'needing to get on with it' when you have to.

Have they given you anything to boost your iron intake or anything? (if it is iron-deficiency anemia) That would probably be adding to your tiredness too.

MinnyMinor

CathyMoran wrote: »

An update - have now been diagnosed as having anemia and am in the final trimester -

you can get treatment for that anyway?

CathyMoran

star-pants wrote: »

Sorry to hear you're so tired. But at least you're almost there (With the pregnancy) and things are going well.
I know there's never much in the way of solutions, but you and your family are strong so you will get there. It is a case of mind over matter sometimes (not in the way some people/doctors say though), but in the sense of 'needing to get on with it' when you have to.

Have they given you anything to boost your iron intake or anything? (if it is iron-deficiency anemia) That would probably be adding to your tiredness too.

I am supposed to try dietary measures before they give me intravenous iron. My problem is that since the surgery I can not eat large volumes so vegetables are something that I do not get much of a chance to eat. People assume that oh, I am over 4 years over the surgery and that should be it - anyone I know who has had it still has chronic fafigue (yes, I know that I am lucky to be still alive). Also, having lots of low blood sugars is difficult, but unless yo have had them yourself then it is hard to understand them (they only worry when I fit). The sarcoidosis is something that I do ignore for the most part but the underactive thyroid can be a pain as it can be very tiring, sorry if this is turining into a bit of a moan. My biggest problem is that people can not accept the fact that I may have chronic fatigue.

Dizzyblonde

Cathy, let people think what they want - trying to convince them otherwise is only a waste of your time and energy. We can't control what others think, and if they don't understand your condition that's their problem.
I hope you get the anaemia sorted.

star-pants

CathyMoran wrote: »

I am supposed to try dietary measures before they give me intravenous iron. My problem is that since the surgery I can not eat large volumes so vegetables are something that I do not get much of a chance to eat.

I can understand that, I have quite a sensitive stomach and it's not always able for fruit & veg. I love fruits, but they give me stabbing pains in my stomach when it's not great so my vitamin levels etc can get quite low.
I can't take multi-vitamin tablets as they too upset my stomach, as do iron tablets.

So it's hard to find a balance of getting the right foods that your body needs, when you're unable to eat them.

Dizzyblonde wrote: »

Cathy, let people think what they want - trying to convince them otherwise is only a waste of your time and energy. We can't control what others think, and if they don't understand your condition that's their problem.

+1 -- people will believe whatever they want to believe. If someone thinks my illness is 'made up' or 'in my head' so be it. I know it's not, because I deal with it every day. As do each of us.

dlofnep

Cathy, I sympathise with you. I used to get physically exhausted to where I'd just be bedbound. I find it best for me to excercise more, which makes me feel better. But people with true chronic fatigue cannot do this, as excercise makes them worse. People are just ignorant and aren't interested in understanding. Human's by default are willfully ignorant I find.

UpCork

I can empathise wtih all of you. I have a close family member who has a progressive degenerative disease, of which chronic tiredness is a symptom. I would say on a normal day he is very tired, ranging on a bad day not to be able to get out of bed because he is so tired. There are other difficulties too - these however people can understand. Even those who know him quite well seem to find it hard to believe. He had a very close friend who he goes out with regularly (when he is feeling) well, yet if he rings up and is told that x (my relation) can't come of the phone; he makes some comment about him being lazy or something similar.
I find it so irritating and disrespectful. As another poster said, if you had a "visible" illness, people tend to believe you more.