I was diagnosed with Multiple Scerlosis in 2009 and recently have been diagnosed with Crohn’s disease( inflammatory bowel disease) in 2011. I try not to miss much work due to the diseases but there are time that I am up and away from my desk alot due to a flare with the Crohns or walking really slow with the MS. My boss and his bosses are aware of the diseases and have made “adjustments” to my break times and time away from the computer. Although my productivity does not usally suffer. I get the looks from my coworkers and my so called “friend” as if I am privledged somehow kind of like the “teacher’s pet”. I just smile and say if you only knew what it is like to be me for one day even on a good day, you would not be able to handle it. I constantly have pain somewhere in my body. My stomach always hurts so eating sometimes is a challenge and having to give up my favorite foods is the pits. My legs usually feel heavy and when the heat hits I really struggling. But to everyone on the outside does not have a single clue what it really like. I dont get restful sleep because my muscle spasm all night long in my legs. I pace the floors and try to keep from screaming and not wake up the household. I try to keep moving for my kids. That is the hardest the kids. they understand and see what I go through but at the same time I hide how I feel so they dont worry about me. So for me I tend to keep it quiet until I cant keep quiet anymore and when I blast whoever makes the comment they usually apologize and say they didnt know. And than my final comment to them is, Don’t assume I have privledges that they dont have and dont judge a book by its cover as it isnt always what it seems because it is always 10 x worse that what it seems.

I get the “you don’t look sick” a lot.  I am only 37 but have had digestive diseases for the past eight years, and had my entire pancreas removed last year, with my spleen and parts of my digestive system.  I have had a feeding tube in the past.  I have pain and nausea daily, and suffer severe malabsorption, but to everyone else, I look thin and nice.  To me, I don’t recognize myself in the mirror, but most everyone I know now didn’t know me that well before I became sick, and it has been a slow progression so they don’t notice how much has changed.  However, I am so sick, and sick of being sick, and very tired of having to explain it all to anyone “new.”  Every time I go for tests, the nurses say, ” you are too young to have all of those problems” as if they somehow don’t believe me.  I am good at putting on a strong “face” for everyone else. I have always been a pleaser and needed to make sure anyone around me is at ease so I don’t show my troubles and pain well.  I hide the suffering very well.  I also now have other organ issues – kidneys, liver, heart (I’m on a heart monitor now) but no one really knows all my problems.  I am for some reason embarrassed in a way at all the difficulties I have.  I rarely have energy to even go out of the house, but the other day when i did, the lady checking me out at the store saw my heart monitor sticking out and asked me what it was.  When I told her, she said “you are way too young.” I just smiled gently and said “yes” but as we left my poor daughter said, “if she only knew.”  It broke my heart.  She has seen me suffer so much, and fighting for my life… she sees how truly sick I am, and I wish I could just hide it from her – and she wouldn’t think I looked sick. 

Thanks for this site… it brings solidarity to all of us- even if our battles are different…

hey please email me so I can include your email to some friends of mine down your way… I’m not sure if they can help but someone needs to try. katrinablackstone – gmail.com

I don’t have lupus, but more severe pulmonary disease.  People don’t understand the disease.  It is hard to find friends, because people don’t know how to respond due to my age, and they stay away.  When I try to explain things, they don’t seem interested.  So, you are not alone in being alone.

I have pulmonary disease that is more severe.  I get the same thing from folks with mild pulmonary disease.  Mine was mild for a few years, and I know it’s a different ballgame all together.  Sometimes I wish people would understand, but I think some people just don’t care enough to understand.  I take it is their form of self centeredness, because “it doesn’t affect me, so why should I take the time to understand?”  Maybe I’m wrong, or maybe they don’t want to see certain injustices that can occur. 

get a blood sucking  corrupt lawyer to sue the city. The lawyer will sue the city for big bucks if you make it easy for him/her by keeping, documenting (include written&/or recorded) witness testimony, all physical evidence including a journal with dates and times of police officer badge #’s, car license plates etc ~ anything and everything you can think of.  If you do that and make it easy for the lawyer they will take your case for a percentage of the profits.  Maybe the thugs will get arrested, maybe not.  BUT you just might get enough $ to move to a safer place.

I’ve had fibromyalgia for about 6 years. I had an ‘incident’ last year when I was at a local Walmart.  I had been fortunate enough to find a hc parking space right up front and pulled into it. I went inside and did my shopping, using one of the motorized carts. If it weren’t for these carts, I could never shop again, I don’t have the stamina for it. Anyway, when I left the store, I noticed a man in a tie came out a few steps behind me and just stood there, watching to see which vehicle I got into, I guess. When I pulled out, I made it a point to drive by him in such a way that he could see my disabled license plate. As soon as he saw this, he went back inside.

Sometimes I have a good day, just like everybody else.  That doesn’t mean the pain is gone, it just means I feel good in general this particular day. Usually when I have to get out of one of these carts to get something out of a store freezer or off a high shelf, it hurts like hell and it’s really hard to keep quiet. 

But on this good day, it wasn’t quite as painful and I sucked it up like a grown-up. Apparently somebody saw that I wasn’t crying out in pain and was actually able to STAND UP and WALK on my own (a few steps). Just because I didn’t look like I was sick, I must be okay and I was taking advantage of the system.

People know so little about this condition that even when I tell them I have fibromyalgia, they still have a blank look on their faces.  It makes me feel like I’m making up the whole thing. How ridiculous is that?

I have Trigeminal Neuralgia. I can’t leave my house without a scarf, buff, or hat. I can’t be in any kind of wind, even warm wind. I look silly at my kids concerts/plays with my head wrapped because of the air conditioning. Someone actually told me “everytime I see you, you have something wrong with you.” Hmmmm…. isn’t that what a chronic disease is? Why else would they call this the “Suicide Disease”?

Yes…yes…yes about a thousand times every year of my 35 years on this planet…when I was a child I would get angry…as a teen I hid out in my bedroom a lot…so much easier then dealing with family who supposedly understood and really couldn’t no matter how hard they tried…as an adult my attitude is..this is my life and my health and yes I look healthy but I’m not-deal with it.  I have to every day of my life.  I guess what is harder to deal with now is the sacharine understanding pity party I get from strangers who think I’m hypochondriac…yes you know that look…the one where they pat you on your hand and at the same time shut down mentally because they can’t deal with it.  I have cerebral Palsy…cfs and fybro (in the past I was dealing with ross river fever and glandular fever as well).  I’m not ‘brave’ or ‘courageous’ or even ‘strong’ I’m a normal human being who hurts just like everyone else when people make rude remarks and keep on living life regardless of insensitive jerks.

I ran across this site by accident. I too have an autoimmune disorder but I do look sick if I allow any of my arms from wrist to shoulder to show or any of my legs or back can be seen. Miserable in the summer heat I can tell you that.

I think it is a double edged sword for folks like us. Those who don’t have obvious physical markers like me get the “wow you look fine” thing and I get the “good God what IS that?” reaction. Always makes me feel soo good. :/ Once when someone saw my arms, my sleeves had slid up a bit and they asked what it was…somewhat rudely and I just snapped. “It’s road rash from a motorcycle accident!” I am the LEAST likely person to be on a motorcycle so they just stared at me like I was crazy. It was very liberating though. hehe My good friend has a deformity of her leg, almost looks like a chunk has been taken out of it. She refuses to cover it up, she wears shorts anyway and when people ask she says it was a shark bite! haha

I have severe psoriatic arthritis, fibromyalgia and hyperthrombosis. I also suffer migraines and infections quite often. I think that Chronic Pain is something no one understands until they’ve felt it. There is simply nothing like the pain you feel from these disorders. When I say I have arthritis so many people go “Oh I have that in my hands” like “So I KNOW you can’t be hurting *that* much.” They don’t understand that mild arthritis of the hands is SO much different than psoriatic arthritis. Thankfully I don’t have disfigurement from it yet but the doctors say I may one day end up in a wheelchair due to it.

I hate when people who have mild forms of PA or even psoriasis try to identify with me. One tiny patch on your elbow is NOT going to impress me much, try both entire arms, legs and backside. Then come talk to me is what I always want to say but I just bite my tongue. When I say something about blood clots. “Oh my mom had one of those” No. You don’t understand. I don’t get just ONE clot, I get dozens at once. People just don’t want to think things can be that bad is my theory.  

I have “invisible” MS.  If an individual makes a respectful comment “But you don’t look like you have MS,” I usually ask if they know what MS is ……  HOWEVER, if an individual makes a SNARKY remark: But, YOU don’t LOOK LIKE YOU HAVE MS!!!!!! I respond: “Well, you don’t look stupid, but apparently you are (while laughing)!!!” 

I have PTSD, chronic depression, and generalized anxiety disorder. I’m also always extremely tired and often in pain (I don’t know why; I’m seriously too tired to figure it out and fight with doctors). I got a lot of flack from “friends” about my anxiety; a girl I knew would try to force me to go out late at night because my “anxiety would lessen once I did more things”. Uh, that’s not really how it works. Apparently, these “friends” would prefer that I have a panic attack and throw up on their shoes (I’m like a sea cucumber; I vomit when frightened.).
 My own father didn’t believe I had anything wrong; he thought my mother (who has depression and anxiety) had brainwashed me into thinking I was sick (my parents are divorced). I stopped speaking to my dad and have effectively disowned both him and his parents.
I’ve had people tell me that I have no need to be depressed, that I’m just whining, that I need to “cheer up” (the next person who tells me to cheer up is being THROWN OUT THE WINDOW, my aching wrists nonwithstanding). I’m not sure why these people can’t leave me be; I’m very quiet about everything and really don’t like talking about my problems. 
I’m just a twenty-one year old woman trying to make my way in life. I don’t know where these people get the idea that they can judge me or “help” me when they know nothing about me or my mental illness.
Sorry if this comes off hostile; I’m very tired…of everything.

I am a 56 year old psychiatric nurse who has suffered since my 40’s with a severe migraine disorder.  I struggled to reach my retirement age of 56 years by shear determination and many a day had to push myself to get through the workday dealing with unbearable pain.  I have been retired now for about six months.

I had an extremely stressful job and because my sick time was elevated according to the acceptable “norm” I was hauled in for an interview under the employee attendance program at the age of 55 which came on the heals of my 25 year anniversary pin given to my by the Health Region for 25 years of unbroken nursing service. 

The meeting was demoralizing.  Later I was encouraged to get a part-time job somewhere else or retire which I finally did just before my 56th birthday.  Over the years of nursing I have been bullied because of my migraine disorder.  I was instrumental in enforcing a “no scent” policy in the hospital where I worked.  Some of the nursing staff wore perfume (a known trigger for migraine).  The enforcement of the “no scent policy” was not easy and I experienced bullying from individuals who considered this policy a personal insult, adding that this policy was a violation of their “human rights.”   Some staff commented that their perfume was “expensive” and in their minds should have been excempt from the no scent policy.   

There is much public ignorance regarding migraine disorder. 

I can get a migraine by walking into a perfume filled elevator or by sitting beside someone in a movie theatre or a restaurant who reaks of perfume. I cannot tolerate extreme heat (either hot tubs. saunas, or hot countries).  I have to limit some activites to avoid the migraine triggers of which there are many.  Inspite of avoiding the triggers, things beyond my control such as barometric pressure changes and weather changes can also trigger migraine.

My migraine disorder has ruined social relationships and shortened my career.  My wonderful friends support me. Others are judgemental.

With the exception of looking as white as a ghost when I have a migraine I look relatively normal, that is until the excrutiating pain, nausea, dry heaves, vomiting and diarrhea start.  My migraines can last 48 hours or go on for days.  I have had some success with Botox injections in terms of migraine treatment.

I read an article in Oprah magazine once, written by a migraineur who described her migraine condition so eloquently… “sufferers are trapped in a different demension, one between life and death where invisible assailants take up permanent residence.  The curse and the blessing of this existence are the same   It won’t kill you.” (Suzanne Ruppert)

Maybe it’s time a book was written with the stories of several of us who have had to live with Sarc and other diseases that are “invisible”.

Invisible people, invislble disease, invisible support… this needs to change.

After living with a biopsy DX of Sarcoidosis for over ten years, I have tried to learn the limit of my “spoons” – and yet there is a cure that many just aren’t getting for sarc, lupus and a host of other diseases that are connected or actually part of the same disease/condition – but the mainstream medical profession refuses to use it – and it’s far less damaging than Prednisone and other drugs.

Makes me wonder how many people have died while our nation’s doctors sit there and look a bit dumbfounded or insulted when you tell them there is a cure and that you want it… Sad.

I count my blessings every day and always steer clear of light, fake Vitamin D (D2), and any bright light as well as MSG and other neurotoxins.

Yes, there are MANY of us out here who look perfect, no damage outside, but it only takes that one day to change that – and we try to put off that day as long as possible.

God Bless everyone who has a condition that makes them count their “spoons” each and every day.

Im a stage IV breast cancer survivor of seven years. I was on chemotherapy and radiation for the first year, then on aromatse inhibitors (pills with side effects but no hair loss) for six years. I am now on an oral chemotherapy without hair loss but continue to experience new additional side effects, and pain from my spinal metastasis. We stage IVs often “look” healthy when on these types of drugs…you would never know we have terminal cancer. Some of us can continue to work, some not. I have lost more than a few friends over the years as I am not able to “keep up” with them. I was once not asked to go on a vacation with someone I considered a best friend because of this…his partner went so far as to say a vacation is only as good as its “weakest link”..referring of course to me. Yes, I have experienced different treatment in my work, employee benefits (pre-death granting of life insurance provision for the terminally ill) and in HUD housing because people have doubed my diagnoses.

I have fought back at every turn with only some success. Unforunaely, there is little free legal assistance available for the disabled and have had to give up on some things because the fight was too tiring and engaging in it endangered my physical and emotional health. One has to do your best to stand up for yourself. But there are times when you just have to choose your battles based on how many spoons you have! I HATE losing so this is hard, but we all have to keep our eye on the ball, which is our health and quality of life. A hard lesson to swallow! People can be callous, clueless and even cruel, but not always. I have encountered some very dedicated public employees at Medicaid, social security and food stamps who have been tremendously kind and helpful. They remind me that there are still good people in the world! Don’t let the few bastards get you down!

After a major car accident left me with lasting pain (I fractured my pelvis in 5 places and broke many other bones) I also developed MPS, myofascial pain syndrome which is similar to Fibro but instead of being “all over” MPS is more localized, for me it is my left side, mostly my shoulder but known to “wander”. By far the most “invisible” issue the accident left me with was severe claustrophobia. I cant even hold hands for more than a minute or 2 before the panic feelings set in. So the thought of using a “normal” bathroom stall terrifies me and I will wait for the handicap stall because that is about all I can manage (and even then it is hard). When I come out of the stall I often get dirty looks from people for using a stall that they feel is just for the “handicapped” and often people will say something or sigh dramatically. I look those people square in the face and say “You can not tell just by looking how claustrophobic a person is, so think before you speak” That leaves them speechless. I put on my hand sanitizer and leave the bathroom with out looking back! I know that I am being rude, but I also know that the person I speak too will think more about what they say and do. 

First off I am very sorry about your diagnosis-I completely understand & have went thru what you are experiencing about really learning who “your true friends” are-I am blessed to have my husband,brother & my bestfriend Wanda(early widow-0 kids like me) & after you get thru this big time slight-You will cherish your circle more & you will also see that oldie but a goodie saying “What goes around comes around”-maybe not today/tomorrow but eventually & if they reach out to you-respond in kind back to them & continue on w/your life & your circle of support. I have chronic back pain,fibro etc..@ this started when I was 26 working as an RN-when I got hurt @ work & my fellow RNs that I thought were my friends totally shunned me & a few were mad that I couldn’t come back to work!!! I am 44 now-My attitude now is-It is what is…Hoping that your bad time settles down very soon & Happy Mother’s Day to you!!

I know how you feel as well. I have Rheumatoid Arthritis with Inflamatory Osteo Arth. plus Psoriatic and Advanced Osteo Arthritises. My Rheumatologist believes I have had it for 20 years but wasn’t diagnosed until 2004. Next week another Ortho. Surgeon is going to try to graft a major muscle back onto my left femur and decompress the bursae that have formed around. it. The 1st time was a disaster.
We also have to move to the city to be close to treaters. For all the friends and aquaintences I made in professional life I have only a few friends left and none can assist either myself or my disable husband. I try not to express my frustrations and disappointments with my husband because he is no longer capable of supporting me emotionally. It depresses him too much.
We have always had an open house policy for friends and family and helped out whenever we have been able but the reciprical support is no longer there.
Believe me when I say, I understand your isolation all too well.

I am a 100% disabled veteran and I can tell you that I have been on both sides of this: people who ridicule me because I don’t look disabled or sick (including when I have been fighting cancer) and those who seriously mistreat me, won’t wait on me in stores and so forth — the invisiblity factor– when I have my adaptive equipment.  The comments can be scathing and painful.  . . . the stories I could tell. . .  after 17+ years of this I am tired of it.

I have had lupus for over 15 years and now things are happening and they are questiong my diagnosis. myoclonic siezures and polyneuropathy and loss of muscle mass. I was actually having a pity party today because some friends are going on a shopping spree out of town and once again I had to say no. I say no alot and have lost alot of friends in the process. I still put my best effort in to help others because it makes me feel needed and important. As far as the ones who left my life.. a season a reason or a lifetime.. it saddens me to think that we are judged on status and social lights. Most people donèt know how to deal with someone chronically ill, all I ask is a bit of compassion and support. I write journals and that has been my outlet for years. I have a journal for every day of every year for the  last 15 years. Positive journaling is very theroputic. Write five positive things about your day does not matter how small and after thirty days you start looking at things with a better insight. remember we are never alone during our hardships and forget the ones who walked away and embrace the ones who walk in your life.

all the time poeple see me and comment well you dont look sick.. my husband is always by my side 10 years yesterday.. i am 29 years old and have three beautiful children.. 2 of whom god bless me with carrying (after loosing 11 before 4 months) and 1 i was blessed with at 15 months old.. some days its all i can do to take care of them.. but i never let my kids do with out, sur emy house isnt always clean.. (ive forgotten what my kitchen counter looks like lol) i try to spend my good time with them and  my floors are clean so they can play, sure my other queen size bed is full of unfolded clothes but there CLEAN, sure alot of my meals are done in the oven or slow cooker, but they are homemade, and not fast food, yeah i cant always take my kids and do extra fun things like they want, but when i can i try to make up for it, I gave up letting others have the right to judge me a long time ago..it hurt so much when i was in hospital after hospital and only heard about howhard it was for my husband to be there and what he was going through.. not from him, from his family. i have no “real” friends who understand what its like.. and support groups.. forget it.. who feels like going to them. but i hold my head up and say im living life as good wanted me to.. i hold tight my fibromyaliga, endometreious, congestie heart faluire, lumbar tistropic non-funtioning right kidney, cystine uria. They make me who i am.. sure i hate the pain and feels they bring, and some times they get the best of me and bring me down, but dont judge me for that.. its what i got not who i am !!!!!!!!!!!!!!!

After my 2nd back surgery ( a triple fusion & a cage of L4 a 15hr surgery) Six weeks later I was on my 1st outing since leaving the hospital. I’m going to pick up my meds. at the pharmacy. As I pull into my parking space (handicapped) & I do have a permit I’m wearing a “turtle shell” or a body cast from just under my chin down to just above my pubic bone. Yes, driving was ok’d by Dr. I also only had to go 2 miles. Anyway, as I got out of my car, a older woman starts yelling at me that she’s in need of that spot because her mother was unable to walk! Well if she only knew! I was sweating, shaking & thinking I my just either cry or pass out I was so sore & weak! What an idiot was all I could think…& that was about me not the bitching lady! I just ignored her thinking she’ll see me barely moving & the look of a person who’s going to either pass out or hurl & also see I have my handicap sticker hanging right where it’s supposed to & she’ll get over it. Sadly no. I came out to a ticket on my windshield from the town cop! I was shocked!! There was a note on the ticket to please contact “John” the cop because he saw that the sticker was current however, the woman who called said I pulled into the parking space, flipped her of as I JUMPED out of my car, yelled & cursed at her & her mother as they asked me to PLEASE move out of the handicap space so they could get her mother out and to the store more easily! This is what the cop tells me that I’ve called regarding the nice $700 ticket he left for me. After explaining my back surgery & that it’s impossible for me to get onto my bed right then because I had over done the easy little trip to the pharm let alone JUMP!!! so I told him my address & he drove to my house to have a look-see at me to “make sure I wasn’t abusing my mom’s or grandma’s handi/sticker!! PLEASE, REALLY?? After going through my 1st surg I learned the value of having handi/spaces for those who need them! That day I was lucky they had a chair in the pharmacy so I didn’t have to pass out or hurl & embarrass myself to death but if I’d had known what the lady had done I would have found her in the store & hurled on her shoes!    

ever since I was dx with cirrhosis stage 4 and there is no cure except transplant. I also have degenerative disc disease and skin cancer, but not active yet we just keep removing the spots. My father, sister and daughter has had cancer removed. I have had many past family pass away. Thank God for early detection.If you go. my own mother seems to think i am faking. Funny my 3 docs have done so much for you and I do not think disability will take a fake test. Shame on those people who don’t support. I cry all the time. It is lonely to suffer in silence. I have a friend who was compassionate to get my meds. She don’t talk to me becuz i do not give them to her. I could go on about stories. One time I had a test done and . .when I woke up nobody there. Did not have a ride home. Finally my son showed up in my car.

As the wife and mother of 2 who all share a genetic disorder, I am indirectly affected by the attitudes and actions of others. It is appalling at times! There was one time when a supervisor told me during my annual review at work that he would not hesitate to give me more responsibility in the office however he did not want to risk it. His reason? He was concerned one of my family members might have a health crisis that might distract me. (Can you spell discrimination?) I no longer work for the gentleman nor will I be quick to disclose any information to my next employer about my husband’s disability.

One of my friends who suffers from the same disorder as my husband and kids shared with me once how she was harassed in a parking lot after pulling into a handicap spot. Eileen looked perfectly healthy at the time despite more than 20 surgeries and a heart condition.She responded with, “Aren’t you lucky that my heart condition is not visible?” With her head held high she proceeded into the store, baffled by the other woman’s rudeness and insensitivity. YOU know the truth about your condition or the condition of someone you love. Don’t let the ignorance of others have a negative impact on your day!

Sorry, Forgot about agreeing to being shunned by firends and family. I have no family and am pretty much on my own.