I once had an incompetent Rhuematologist that somehow got my chart switched with someone else’s. He tried to convince my husband and I that had fibromyalgia. We agreed with that, I had been diagnosed with it years before but my latest symptoms included pain running down my arms into my hands, stumbling, falling, dropping things and not to mention that my pain had increased 10 fold. I left the practice when the PA told me that the office staff thought I was one of their “complainers”. You’re damn right I complained, I was in excruciating pain. My next doctor did another series of tests that showed that I had a degenerated disk that was so bad that I was almost bone on bone, the top vertebrae had slipped forward on the bottom one so that my spine looked like I had a set of stairs and I had a bone spur pressing on the nerve root. I had a fusion and guess what, my pain got better and all my neurological symptoms went away.

What makes me the craziest is when I have had someone say to me, You don’t look sick” or “You don’t look like you have a bad back.” Really, what does a “bad back” look like?”, I want to respond, in a not too polite manner. Another response that I must choke back is, “Oh, when did you develop x-ray vision?”
Among other illnesses I have degenerative disk disease. My MRI last week showed that every disk in my neck is degenerated and most are herniated. Two vertebra have fused themselves. My doctor has informed me that I am going to need surgery, again, to help control the pain, that is if I’m lucky, it will help the pain.
If these people only saw the number of medications I must take for my various illnesses to get through the day. These people only see me on a good day, for a very limited amount of time. Once we go our separate ways I will return to my beloved easy chair and spend the rest of the day lying down. This is the only thing that reduces the pain. However, we all know that just lying around all day causes it’s own soreness. And let’s not forget the boredom or the loneliness. It’s a little difficult to maintain friendships when you must spend most of your day flat on your back.
I know these people don’t know any better. I know that most are not purposely being insensitive, but that knowledge doesn’t really help the frustration when I heard those questions yet one more time.

After being hospilized overnight, four months of test, I was diagnosed with a condition called “Nutcracker Esophagus”
I have consumed every bit of information I can on it and there is not much.
It is painful, scary and frustrating. I can’t even mow my lawn without taking several breaks and pain the entire time. What use to take an hour is now two hours. I can’t walk my dog up a small incline without chest pain. It has changed my life and activities 100%. There are many triggers. Alot of them fall under the catagorie of “living”.
Every thing I’ve read says the patient should have no problem returning to full time employment… What employer is going to hire a person who has this? It takes several minutes to stop the attack and if you resume what caused it in the first place it never stops. The pain is severe, it feels like a heart attack.
I am on a total of three out of five therapy’s for it. The last two being surgery which may not work and the other botoxin injection for temporary relief. I have nitrates and they do work to stop an attack…the tradeoff is the worst headache I’ve ever had. A lingering throbbing headache.
My point is there is NO way I could return to my highly physical job with this. People are not educated. There is not enough information.
My relatives and other folks I feel think I’m lazy and don’t want to work. After all, I look fine and not lying in a hospital bed.

When I called the “help” line, I was told to get prepared: 1. to live in a wheel chair, 2. Have my fiance dump me, 3. Have my child taken from me., 4. Need to move in with my parents, 5. but call often because they are there to help! 16 years later, I am still married to the then-fiance who never dumped me, adopted my child, gave me another beautiful child, and loves me through all the chaos this illness brings. Life is challenging enough, but I am fortunate enough to have the support of my husband, the Invisible Illness Community, and an awesome Church where I have met and bonded with other suffering from similar ailments. Even within the scope of my illness, everyone suffers and thrives differently. I think we can all relate to the ignorant but well-intended comments from others without our experiences nor affliction. I can’t tell you how often I have been told I was in a handicapped parking zone when my reply is that I AM handicapped. Just somethings we endure.

What book?

I totally relate. My mother in law is a doctor and would advise stretching for my Fibro. Really now? I was a former dance major who did mad amounts of yoga, I think if stretching cured Fibro I would have been golden. 

However, I think it’s helpful when people who actually know what they’re talking about give advice for things to try. My friend Sara seriously saved my life by recommending a book on autoimmune disease. That book led me to alternative therapies that have almost totally cured my condition. I am so happy she shared it with me, and I have made a point to share what I know with people I meet who have autoimmune disorders.  

 My mom actually stole my medical  insurance card so I could not go to the  doctor and be a hypochondriac!

I had almost the same thing happen to me. Went to a specialist where she was nearly drooling at my family history of immune system diseases. All the tests came back negative and she, for all intents and purposes, told me nothing was wrong with me – even though she had witnessed some of the symptoms with her own eyes. After I left the office in tears, I made an appointment with another specialist, whose very first questions was why the original one hadn’t tested me for a number of other things. This specialist is kind, understanding and listens. I don’t feel “crazy” when I leave her office but feel that I have been heard and that she is working WITH me to find a solution.

With that said, my family does tend to make “suggestions” about what I should try, etc. It gets old pretty fast.

I know the feeling all to well of people telling you it’s all in your head!!! Sometimes no most of the time I would really like to punch them in the face!!!! I’m 48 and I feel like I’m falling apart!!!!! I have been hurting for awhile (2003) I have gone to the ER so, so, so, many times it would blow your mind and of course everytime I went they didn’t find anything!!!!! It made me feel like I was going crazy!!!! I just wish all these people could be in my shoes for a week no a month and then maybe they could start to learn what we all go through every day!!!!!!!!!! Oh yeah I didn’t tell what disorders I have…. I’m bipolar, social aniexty disorder, depression, panic attacks, and I just found out June 1st I have fibro. and arthritis in my knees!!!! So everyday is a pain in the booty!!!!

My favourite answer to “It’s all in your mind/head” ………  “Oh?  And where the hell do YOU live?” 

Because every motion we make and emotion we feel, starts ‘in our heads’ – ultimately, that’s where we we all live our lives.

My favourite answer to “I don’t believe in depression” …….. “Ooooo, well lookit you with all ya choices!!”

Oh. and my doctors??

“Well, if you just lose the weight… ALL of your chronic pain will go away”….

Yes, because all I do all day, every day, is sit on my butt and cram junk food and fried food down my gullet….  and don’t exercise at all… and don’t do the little exercises the doctor gave me to help improve the muscle weakness in my lower back… because, you know, I ENJOY being overweight….

I am insulin resistant, and I eat a diet that is suitable for my illness. I tell them this every time. That my weight isn’t budging because I”m doing something wrong. It isn’t budging because it takes LONGER for the body to react, when I do something right!

“Well, you still need to lose the weight.” As if reminding me, EVERY SINGLE VISIT, of my failure, is going to just melt the weight away and  cure my chronic body pain.

By the way, doc, even skinny women, who have PCOS, complain of chronic pain. So I know that my weight isn’t helping, but it IS NOT the cause, since I’ve had the body pain before I got fat!

>_<

YYes, because all I do all day, every day, is sit on my butt and cram junk food and fried food down my gullet….

How about this one: Have you thought about getting a job, so you won’t think about yourself so much. This to a 74 yr old fibromyalgic/

i have same problem Jackie! hernia op 2010 May,
going to shops (if can remember what i gone for anyway) everything is just a chore!  House hold chores is hard work most of time and if a burst of energy laid up for 3 days.

 knew straight away something was wrong went home after having to stay due to blood pressure, i complained over 2 wks went by and Dr’s and rushed to hospital and X Ray and CT scans finding nothing, back to theatre had a nerve wrapped around a screw!! since then until now i have suffered ! feb 2011 my neck went 3 times! discs  indenting on spinal cord compressing on nerves symptoms both sides of body after MRI’s now recently since xmas seen neuro surgeon and Neurologist and another MRI on Brain still waiting results and i tell you in start pills given for Neuropathic pain which down the neck thats what i believed but gone on too long 2yrs gone by, so investigations in my medical records.. i get told ‘try get rid of the symptoms form you r mind’ and excercise….errrrm my job is physical and i own the business now physically am struggling and paying out for help for work i could manage on my own!! still getting no where .. certain Dr’s just do not understand the suffering daily and at moment its facial and all left side of body and hands, also have other illnesses with it .. i belive Ms but they think fibromyalgia.. i was  RITE the 1st time whensomething was wrong and they just gave me pain relief and i demanded looking into it . as i know my body better than anyone and the research i done i believe i am rite this time too..
friends etc ohhh you soon be ok ! :-/ . Are you coming out, you can have one or 2 or i dont drink either just go out …(i dont feel like it)
are you stressed ? omg ohhhh lifes grand but you be alrite (are you a physcic do you know my future) i guess it is hard for outsiders and they will say hte wrong thing, cannot give everyone a leaflet on the illness that i come across lol . xxxxxxxxxx

After losing 30 lbs. in less than 8 weeks after being dx’ed with CSF Rhinorrhea, we went to the PCP.  I had the same cane, the same problems walking, the bloody, cracked lips.  He said, “NOW, THIS is the first time I’ve actually seen you LOOK  THE PART of a sick person!” (as if I was ACTING BEFORE?!??!WTF!) I just stared at him, could barely sit up, just as before- for him, it was the weight loss that seemed to freak him out, even as I was just as sick previously- two weeks later, a gynecologist 6’3″, skinny as a model, about to have her baby, found 2 ovarian lesions on ultrasound.  She described me in the report as “well nourished”- even as I’d lost 6 MORE pounds- at 105. Now I just colored my hair red, which took the last bit of energy I had; I think that most docs will now declare my genetic disease cured, because not only am I skinny, I am also now “cute” (as opposed to frumpy), even if my prognosis is very poor, and I’m in bed for most of the time!  Maybe that’s what is meant by being a”cutely” ill?

Love those may I share them please

My all time favorite that my Dr (and friends) say is….You know stress isn’t good for your Lupis, and could cause flare, so try to avoid it. Like I can get a Dr’s note saying “Please excuse Meredith from all of the stress in her life”

I know my epitaph will say “I told you I was SICK!!!!!!”

I have been in similar situations too, i like your warrior attitude 🙂

You could work if you really wanted to.. You seemed OK a few weeks ago.

I think I have heard all of those!  I have Celiac and Fibromyalgia.  My “favorite” is when anyone who is in a nutritional networking marketing company swears that their product will cure me and make me feel 100% better. [By the way, I am not against NWM at all – I love it – I just hate it when the second a person who doesn’t even know me hears I have an autoimmune disease they literally POUNCE!]

I have trminal cancer. My favorite one:

If you don’t stay positive your health will get worse. (Thanks for your scientifically researched opinion, too bad all those negative thinkers ahead of me had to die when you have found THE CURE!)

My grandmother is appalled at the ten plus hours a day I sleep. Trust me, I would MUCH rather be running that marathon!   my favorite line is from an Anne Of Green Gables book… please forgive the paraphrase,  you know…memory probs.

“She made the sweetest looking corpse.”

My favorite in my personal life is :pray more and maybe its from a demon! 

This is a great list, and I’m sure all of us who suffer with chronic illness could add to it. Coping with the perceptions–and “suggestions” of others is so often an added burden.  I wrote an article on a similar topic, which I’m hoping people might find helpful. 
http://livingwithcfs.com/fibromyalgiacfs-friendship-seeing-through-invisible-illness/

Unfortunately, ADA only applies and helps people who have been “proven” to be disabled. Person in a wheelchair paralized? Pretty obvious, and ADA would help them if they were fired because they couldn’t carry something up stairs or they missed work because of their disability . Person with debilitating chronic pain that isn’t specifically related to a “physical ailment”, like the nerve pain from Fibro, or migraine headaches (my burden to bear), debilitating PTSD (my friend’s burden to bear) or depression? Not obvious, and not easily proven. If your doctor has not completed paperwork to send to SSI for you to be declared “disabled” by the government, ADA won’t help if you are fired for missing days due to your illness. The best (and still completely inadequate) way to protect your job is to complete FMLA paperwork with your doctor.

BTW, for fellow Migraine sufferers: Migraines are considered a qualifying chronic condition for FMLA protection. Your doctor has to complete the paperwork and then you have to get them to fax a note when you are out of work due to a migraine, but it makes it a lot less stressful to not have to worry about losing your job on account of not being able to get out of bed and drive there.