{{{Alexa0414}}} hugs.  You’re not alone.  So many of us experience the same physical problems…brain fog, confusion, staring at the computer screen (or page in a book, or television, or in the refrigerator) and not actually seeing it.  It’s not fatigue like many people think of.  It’s not necessarily a physical tiredness, the kind that comes from working hard.  But an overwhelming, physical, mental, emotional, etc. feeling of just not being able to even think another thought.  Not alone, sweetie.  Not alone.  And not rambling.

I am sure we have dealt with the “doubt” from others. I have lupus and other underlying multi tissue diseases. I have had that doubt from in laws through it all. “Well you are so lucky you can stay at home when some have to work no matter how they feel.” or “She doesn’t look sick and I am sure she plays  a good act towards the doctors.” hhhmmmm would they like to see results and folders that are so thick from ongoing visits to three doctors a year? Would love to put them in their place but.. would not do me justice with the stress.

I’ve replied before but I have to say more. I feel alone. I have CFS and FM. The fatigue is so different than what people think. The brain fog, confusion, vision that gets blurry. It happens to me at work and I get so frustrated cause I sit there just staring at my computer doing nothing…acting like I’m working. Sometimes making mistakes and having to redo stuff over and over. My boss and Office Manager know about it and we have an agreement that I can leave when it gets like that. I can make up hours when I feel well or work from home. But there is an underlying feeling that it’s not okay. When someone else doesn’t feel well, they stay and deal with it..they wonder, “why can’t I”. They don’t know how different my “not feeling well” is.
I have no idea if what I wrote makes any sense. I know I’m rambling. I feel so alone.

This sounds very familiar! No matter how many different ways I try to make my parents understand my chronic pain, they never do. A friend even told me recently, “Stop expecting that they’ll ever understand.” My mom has asked me excitedly, at least five times, about family trips and vacations. I keep having to explain to her that I can’t ride in a car or go on a plane or sleep on an air mattress and that traveling has become more painful than enjoyable. So I get to hear about all the fun family plans and bite my tongue waiting for her to finish, and then try to explain calmly how I (again) can not participate.

I’ve had CFS/ME and all the attendant painful, isolating, crippling problems associated with it for 17 years, half my life. I’ve heard; “just get off your arse and do something, you’re just lazy”, “oh, so that’s a disease, is it?”, “so, what, that means you just sleep a lot?”, and so on… and, of course, ” but you don’t look sick”. Etc. My favourite one is when you go to a medical doctor for advice/treatment for serious physical problems, they ask you to list all your symptoms, you do, and after a short silence they ask you; “Have you ever been to see a psychiatrist?” Wonderful. :S …. I like to take the approach of smiling sweetly (whilst thinking “oh jeez, not again, oh well, here we go” 😉 ) and answering them with some facts. Usually helps. 🙂 

A couple of years ago,after a lot of prompting from my GP and husband I went to a local psychologogist. They felt I needed help coping with my multiple arthritises (rheumatoid, psoriatic, inflammatory osteo and advance osteo arthritises all proven by pathology anf MRIs). For a number of reasons I use 2 walking sticks to ensure my “gait” is balanced (in the past 10 years I have had 2 laminectomies for cysts crushing the nerves to my legs, 1 total knee replacement, the Glut. Minimus and Medius muscles have torn off the lt femur and I had a calcified trochanteric bursa, small fibre neuropathy in hands and feet and so it goes on). After several sessions she decided that because I didn’t look sick and I was walking well (with my stick).I didn’t need my sticks, I was just attention seaking. I gave up on her very smartly. I wish I had had a copy of the “spoon exercise” to show her. I would like to print it out and post it to her but it would probably be water of a duck’s back.

It took me a long time to get up the courage to go to another therapist for what my GP calls ” reactive depression”. This new psychologist is great. She has even visited me in hospital a couple of times. Fortunately I was seeing her when  developed yet another complication, low and high frequency hearing loss with  a variety of tinnitus noises, hyperscusis but only on the Rt side of me head. After 8 months I am finally coming to terms with these new restriction to my life. I am advised their is no cure and limited treatment available for the hyperacusis. I am waiting for a referral to a specialist audiologist who deals with this (she is 2 hours away). I have already had 3 audiograms, seen 2 different neurologist and a neurosurgeon.

One bonus I have had is a positive response to IV Lignocaine for the small fibre neurpoathy and TMJ neuralgia from the the damage to the chochlear. The 1st time I only got 6 weeks relieif from 7 days of infusion. In March I went back and had 10 days of infusion. I am hoping for a lot longer relief from the neuropathies this time. My only complication with this treatment has been that it has significantly disrupted my clotting factor. I have already had 2 lots of pulmonary emboli in 13 months. I am only just getting my daily dose of warfarin sorted out (after 6 weeks)

After a very active working life and raising 3 children, playing golf, tennis and swimming, and travelling to many parts of the world as well as  camping / caravaning with my husband, my world has shrunk to a couple of friends who really don’t understand, no music, limted TV or outside social activities. I get so tired by lunch time each day it is an effort to keep doing things like cooking, sewing, a little gardening and reading.

I have requestred a whole body transplant but keeping the brain except for the rt choclear but no-one is prepared to try this type of organ donation / treansplant.

Oh well, if Job can survive his testing times I hope I have the faith to get through mine.

every single day .. I have heard but you don’t look sick. the steroids bloat me,the meds make me edgy and tired. I have  Lupus,  IBS, Fibromyalgia, osteoarthritis, chronic migraine and kidney infections, bi-polar and depression.

I am also a recovering alcoholic who has not  had a drink in 21 years.  I take drugs to help my diseases, not to get high.  I have made an effort to not go on narcotics or benzos  for pain or anxiety but alas those days may be ending because of the pain I feel. I have stopped feeling guilty because I need to rest for the day, even when its beautiful and sunny outside. Guilt is the producer of shame and shame will only bring well guilt and shame… two emotions I cannot afford to entertain these days.

As I continue in my sobriety  one day at a time, as I do with my illnesses.  No matter what those around me say…. I am capable of doing this with the strength of God backing me and the support of those who understand.  Just like  going to a 12 step program to stay sober, I seek out support from people who truly understand chronic illness and the statement… “But you don’t look sick”

One day at a time.. knowing that I can make a difference in peoples lives with compassion and mercy to them,  because I truly know blessed are those who are merciful, for they shall receive mercy.

today, it actually hit me. enough to make me cry. it hurt so much.
i made the choice a month ago to live clear. i wont hide, if you have questions i will answer, however i am not afraid. my family lives by the “If you ignore it, it will go away” the, this too shall pass, mentality. great, go with that. im lucky that my fiancées family trusts honesty more than most. im thankful for that. 
my issue is this…
my fiancée Mike is the best-man in a wedding 2 weeks from now. we never received an invitation. this was understood by Mikes family to be a simple over site, after all, he IS the Best Man in the wedding. I was to be @ the table with Mikes mother and father as his younger brother is also an usher and then would be sitting with us. as an adult. still, no invite to our home. after shopping for an appropriately Day Wedding Dress that covers (you know) He gets this text msg today…and i quote…
“You can bring Ama if you want, I guess. If she can BEHAVE HERSELF. I just dont want her popping pills and causing a scene. I saw her in the bath room and I dont like drugs.I dont want your some girl on drugs @ my wedding.”

yeppers, thats about it. i choose not to go. if She thinks im gettin high, im maybe not paying enough for my overpriced medication.

Sorry for the above typos… Hopefully readers will know what I meant

I’m sorry, but unless you have dealt with an invisible illness personally, you can’t possibly know how it feels when someone tells you that “you don’t look sick.” Yes, I suppose some people are just paying a compliment, but most of the time it just means that they just don’t believe that you could possibly be that ill. Positive thoughts are great and all, but sometimes you just want to feel understood. You don’t want your illness to be completely minimized by, “Well at least you look good” or “You just don’t look sick.”

I have scleroderma/ morphea in a very (unfortunately) unique way. Everytime I have to visit a dermatologist, immunologist or reumatologist the doctors look at me in surprise and you can sense their curiosity. They then say they cannot decide on the treatment and need more expert opinions before they can come to a decision. When showing up on the so called ‘platform meetings’ which exist of around 30 or so called experts in the abovementioned fields it turns out that the majority are students from med school, and I am being used as lecture material for the doctor to show off. I know I should ignore this but it feels wrong.

After telling my pain doctor (who I see for daily migraines) that I would be traveling to Colorado for two weeks to see if the weather would make a difference in my pain levels, but because i have spent all my time laid up recently. After spending a few minutes talking about how severe my pain had been that month, my doctor looked me in the eye and said, “well at least you’re going on a ski vacation, right?”

I would teach them to offer but only if the person looks like they might have difficulty (shelf is too high etc), but not to be upset or offended if the person says that they don’t need help. I try to be polite if I’m refusing help I don’t need, but I’ve learnt that there are those out there who can be damn rude when help is offered. So, I think it’s also important teach them that some people like to be as independent as they can (and that they don’t always like the implication that they’re helpless/need help) and sometimes they might not like to be helped, that this can sometimes make people seem rude when they say no to help.

It can be hard to learn the difference of when to offer help, but I think kids learn well from watching you and the people you interact with. And I think if you teach them that offering politely is the way to go, but to never assume a person will want/accept/be grateful of that offer.

Little things you can teach them that will make a huge difference and would be unlikely to cause offence, are: never touch/move someone’s wheelchair unless the person sitting in it invites it; to be aware of the space they’re in and those around them (it’s amazing how many people are clueless about the space they inhabit), not to leave a shopping cart half across an aisle,  that the person sat patiently there in a cart/chair might be waiting to get into the shelf they’re blocking… but is too polite or unable to ask; that if a person using a chair/cart/crutch/cane is coming towards them, don’t walk directly at them and expect the disabled person to move aside/go around (it’s nice if the able-bodied person moves to the side instead of making the person using the aids do it); if walking behind someone to not walk up close, but also if walking in front to not stop dead suddenly; never stare, but it’s ok to look, smile and say hi (but that asking anything else can be rude). 

Basically, take all the things that drive you crazy on an average shopping trip and teach them not to do them 😉

Hope that’s helpful?

You bet.  I’ve been Dx’ed with lupus (originally) which Dx changed over the years to RA and now primary Sjogren’s with RA and lupus like symptoms.  (Personally, I don’t care if they call it pepperoni pizza if they can keep me feeling reasonably well!)  Additionally, I have asthma and allergies.  I’ve gotten “the look” a hundred times when I get out of my car and walk (on a good day, without a cane or visible braces) into a mall or store from my DP parking space.  To be fair, there have been times that I’ve come back out only to realize I’d forgotten to put up my parking placard on the mirror, so maybe I sort of deserved those 🙂  I used to get really REALLY mad.  Now I’m older and have been living with this for over 22 years, and I let it go.  People are almost never overtly rude, and I do my best to realize that when they are, they don’t understand.  Quick prayer for them and let it go.  Means I don’t carry around a ton of grudges about this, which isn’t healthy for me and doesn’t accomplish anything anyway. 

Oh gosh. I meant no one knows what my SHOT does. See theres that fatigue from not sleeping from stomach trouble. I am so sorry I did not catch that.

I have Scleroderma and in 2005 I had to quit my job because of my health. I was only 27 at the time I left my job. I am sure most of you understand how hard it is to find a great doctor whom actually treats you like a person and not like paycheck. Where I live it’s rare to find a doctor whom has even had a patient with scleroderma. Well I decided I would journey 5-6 hours to see a specialist in scleroderma, a well known researcher, and he was also a well  known speaker all pertaining to scleroderma. When he came in the room he took one look at me and said well I see you listed you do not work…..ok..he says well why can’t you work, what keeps you not seeking work? I felt so disappointed and mad at the same time. He reminded me of alot of people whom say ” you look good”, “you do not look sick”, it seems as though because I am dressed,sitting up,awake,speaking,etc I “should” feel great.
  My appointment went from bad to really bad. Somehow it was brought up that I have to sleep in a recliner because of the pressure points on my body from the skin lesions and muscles that had atrophied would hurt so bad. His recommendation floored me because it is recommended people with scleroderma should avoid any unnecessary surgery due to healing problems. This doctor told me to see a plastic surgeon in his medical building to have some fat injections placed in these areas. Never in my life have I ever been told that and I sure hope I never meet anyone else whom says this again. Needless to say just because a doctor is a well known physician dealing with scleroderma patients it does not mean he is that great of a doctor!

I suffer from SLE and have recently had knee surgery, I have a handicap placard and parked in a handicap space. Upon getting out of my car I heard “You don’t look handicapped to me. I simply responded with “Thank you doctor” and kept moving.

I had a really good friend in 2007 that “broke up” with me because she was a feminist and said she couldn’t respect a woman that relied on a man to support her and didn’t work and earn money!! She also said it was because I was lazy and never wanted to go out.   I didn’t KNOW for sure I had MS then but when I contacted her a year later to tell her, she said, “That’s no excuse, I know somebody with MS and THEY still work!”  Anyway, it broke my heart, I thought she was a better person than that.  I hope she never has to find out what it’s like though.  

I work as a clinical therapist at a Fibromyalgia clinic in Canada (Maple Ridge BC) and have seen literally hundreds of patients who have been told “you look fine” therefore they must be fine. Friends will often say, “I have a bad _____ and I still work” insinuating that my patient is lazy, or weak, or trying to rip off the system. We often refer to our clinic as the “last chance saloon” for many patients who have decades of abuse by professionals and amateurs alike who rarely even acknowledge that FM, CFS and others are real diseases.
I’ve had patients tell me they almost wish they had cancer or an amputation that others could see so that others would believe and empathize.
Scott

I recent Dx with TOS. UnDx nearly 10 years. 9 years ago while still suffering heard the following: Orthop 1.) “well Sometimes these things get better sometimes they don’t.
Orthop 2.) “I feel really bad but I just cannot give you an answer, I don’t see anything wrong. PT tech ” we shoild just shoot yuput you out of your misery”

I’ve been suffering bad, horroble quality of life for 10 years and now I need major surgery. I’m noticing a trend locally. I took my dog to the vet. I knew his symptoms were a congenital disorder. The doctor said nothing and was trying to convince me it was kennel cough because he was a puppy. It wasn’t bit I let him go on and on. It wasn’t until I mentioned it he Dx the dog with it. The doctors in this area run it like an HMO. Keep making patients come in come in co,e in before they give Dx or test. I’m disgusted.

He’s a Jerk, he want the right man for you.

I thought I posted this…exact same situation here. I wanted to say to them, hello that is what make up is for! Hide your illness so u can survive…

I gotta tell you Rachel, at first I read your post & was floored. But then I thought about it & came to the conclusion that @ least he was honest. So many doctors will guess & guess & guess and just flat out waste your time & money. Would have been nicer if he’d finished his statement with “…but I’ll find someone who can”. 

As the result of a traumatic event in my life, I ended up in the spare bedroom of friends I’d known for 8 years. Four years prior to my stay there, I’d been diagnosed with MS, a yr & 3 months after I was declared permanently legally blind from Glaucoma caused by taking the wrong medications for misdiagnosed Optic Neuritis. Before then I was a vibrant single Mom of a wonderful child with Aspergers Syndrome. I felt I’d weathered the storms well. Other friends would refer to me as “inspirational” & say things like “I don’t know how you do it”. Often even those friends would offer to help with rides to church or the supermarket at first and then we’d become too much trouble. But THESE friends were a minister & his wife. I’d noticed some change in their way of relating to me since I’d become ill. Before I was their interesting interior designer friend. Not so much now. One evening during my stay there (which I payed them rent for), I suggested a “State of the Union” meeting to address any feelings they might have after 3 weeks of having a “sick” person in their home. I had many days of starting out with only 4 or 5 spoons to begin with. So they often came home from work to find me in my room sleeping. Or the Pastor would come home from lunch to find me sleeping. So his first question was “Sometimes I come home for lunch and wonder ‘what did Betsy accomplish today?’ “. What a shocker. After being dumped by those oh so enthusiastic ride offers before, I was stronger. And this time I politely told him “Well, first off, today I got up & could walk. But before I could do that I had to wake up to my alarm & eat a health bar to get some food in my stomach & take medication for my stomach. Then I reset the alarm for 30 min. later & slept some more. When the alarm went off again, I took six medications, reset my cell phone for 30 minutes again & slept while they kicked in. Then I slowly made it down 2 & a half stair cases to the basement where I did 2 loads of laundry and ironed 45 napkins for your church. Then I fixed myself some lunch. After lunch, I needed to nap. That’s how you found me when you came home from lunch.” I now stand up for myself, calmly & pleasantly. I don’t mind if some jaws drop. I am making the best of my life & doing things I’ve always dreamed of doing. I am writing. I am going to get a degree thanks to Commission for the Blind & Visually impaired. I do my own shopping via the bus system in a much larger city than I’m accustomed to. Occasionally I have minor set backs but I work hard to regain any losses. I can walk up to 5 miles a day most days. I am strong. But I will no longer allow people to belittle me. They already think poorly of me. What do I have to lose by telling them that even though I do it with a smile, I may be in incredible pain that day. Sometimes I explain to people that if I’d woken up feeling like I do most mornings 10 years ago, I would have called for an ambulance…seriously. But now I know my routine & I do it, just like your life changes when you have your first child. You just do it. Or……you lie there & waste the day you’ve been given. And…I do things like post the Spoon Theory link on Facebook. Thanks for the opportunity to share with my friends that way! -Betsy

 I’m sad that you are retired, because we need doctors like you desperately. You described what has happened to me and countless others. About 11 years ago I was in so much pain for so long that I couldn’t imagine living another year feeling as bad as I felt. When I finally got into the Stanford Pain Clinic, after being on the waiting list 1 1/2 years, I was so relieved they believed me that I cried. Unfortunately they couldn’t treat me, because we were moving from CA to AZ the following week, but they wrote up a detailed treatment plan for me to take to my next doctor. This worked pretty well for awhile, but we live in a very rural area and I’ve lost 3 good doctors over the past few years, either to retirement or moving away. People (even medical personnel) get very judgmental when a patient is on strong medications for chronic pain conditions. I take my medications carefully, exactly as prescribed, and contrary to popular belief I don’t get any kind of a high from them. Sometimes I wish I did, but I don’t. But I have been told that it’s all in my head, and I have been treated like a drug seeker, though I have always been very careful to stay with one doctor and one pharmacy to avoid that kind of suspicion. Thank you for telling it like it is from a doctor’s viewpoint. I know you’ve given me some validation with your comments, and I’m sure there are others who feel the same way.