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Posted on 10. September 2010

Shaking the Stigma of Sickness

By Trudie Mitschang

It’s always enlightening to read Facebook posts from our readers. A recent comment really got my attention: Responding to a question about how to educate others about chronic illness, one woman said she struggles with the stigma that accompanies long-term poor health, especially at work. She hated the thought of being viewed as the weakest link by her colleagues, and although it was probably in her best interests, she resisted going on disability because she didn’t want to be labeled “that sick.”

Earlier this year, I suffered a back injury that led to a protracted and painful bout with sciatica. The tingling, numbness and nearly round-the-clock pain was most pronounced when I sat at my desk.  And as a writer for IG Living, that’s pretty much all I do at the office - sit at my computer and type.

Initially, I welcomed my co-workers’ sympathy and understanding, leaving the office early for doctors’ appointments, taking more frequent stretch breaks, and missing entire days of work because the pain pills left me feeling drugged and exhausted. But as weeks stretched into months, the story grew old and people gradually stopped asking “How’s your back?”  I felt an unspoken obligation to begin pulling my own weight at the office again, gritting my teeth through long meetings and basically just toughing it out. Some eight-hour days seemed unendurable.

During that time, I learned something about the nature of invisible illness. If you have a fever, are coughing or throwing up, everybody immediately “gets” that you are sick. But if you look fine on the outside, there is a general expectation that you should feel good on the inside. Our readers know better than I do that this is simply not true.

At the peak of my pain spell, I remember nervously thinking, “What if this never goes away?” As a writer, the possibility that I might be unable to do what I love most was heartbreaking. And like our Facebook poster, the thought of going on disability filled me with dread; I didn’t want to be considered “that sick.” Maybe I felt guilty, too. I’ve sat in judgment of those with invisible illnesses on occasion, casting sidelong glances at people who appeared healthy yet parked in spaces marked “handicapped only.” What I know now is that there is almost always more to a situation than meets the eye.

As I write this, I count my blessings because my experience with chronic pain was temporary.  My back got better and my symptoms are gone. But, wearing the stigma of chronic illness for even that short period deepened my compassion for those who live with this struggle daily. It certainly drove home the parable that says, “prior to criticizing a man (or woman), we should walk a mile in their shoes.”

How have you dealt with the stigma of having a chronic illness? What has helped you cope with other people’s assumptions and judgments?

Categories: Life With IG

Comments (14) -

8:54 AM on Friday, September 10, 2010

You should really read butyoudontlooksick.com, especially the spoon theory. it's very enlightening for people who don't have "invisible illness" and even for those of us who have it, it's comforting to know there are other people out there who get it.

it's really hard for me to try to tell people what's going on when i've got bad fatigue or i'm feeling poorly, because it's often unspecified. just saying you don't feel well isn't enough for some people. giving people the benefit of the doubt is the best thing you can do. i can't tell you how many times i've had to explain myself to people when asking them to give me a seat on the metro. it's sad, it's frustrating, and i shouldn't have to tell you my medical history, healthy person. just take my word for it that i'm sick and move.

nynah mason
5:44 PM on Friday, September 10, 2010

    When my health problems reached a certain point it was clear to me that no matter how determined I was to not let CVID change my life it already had.  There were other issues as well including sciatica/back pain which was intolerable when I attempted to drive.  Since my job required much driving the decision was out of my hands.  Having multiple invisible health issues is bdifficult because people don't understand why you choose not to engage in some aqctivities.  But since I'm still on the green side of the grass I'm choosing to simply do the best I can and enjoy life as much as possible.  Maybe retiring isn't the worst thing that could happen; a retired hospice nurse should know that.

Chrystal Byrd
6:00 PM on Friday, September 10, 2010

How true, how true...I have been sick my entire life - it actually began when I was still in my mother's womb when she suffered a variety of strange infection after infection after infection during her entire pregnancy.  I have always been the sickly one and my sister the healthy one. You get used to feeling bad more days than not and sometimes it is so disheartening when you have folks who doubt the validity of your fatigue, pain, or emotional suffering (which unfortunately many of us have learned to hide fairly well).  I also hate it when I do actually stand up for myself (I usually give every last bit of ALL of any energy I am blessed with to doing for others) and I have to say no and there is that unspoken, "It's probably just laziness b/c she's a big woman."  Everyone knows there is a stigma associate with being heavyset, which is unfair to me, given all that I do and amaze and inspire others to do. I have taken my kids (by myself b/c my hubby works all the time) camping twice a year (always only using a tent and cooking all of our food over the fire), on endless trips to visit caverns, Pennsylvania's Amish Country, New York City (several times outwalking my 9 and 10 year old), Legoland in California, climbing the sand dunes in Michigan, canoeing, fishing, swimming in pools and the Atlantic and Pacific oceans, taking them to the Iditarod in Alaska, going to museums, science centers, aquariums, zoos, teaching them how to ride planes, trains, ferries, buses, and trolleys, etc...There is soooooooo much more I cannot list, but again, I have done this all by my heavyset self with 2 kids who Lord knows don't always get along =).  If I say I'm tired, I am truly T-I-R-E-D!!!! It took my husband several years to not get upset if he called me from work and I had been taking a nap.  He is only beginning to understand that when I say that I feel my body is beginning to shut down (meaning I need to close my eyes and rest), I'm not kidding.  My mom and sisters understand, but no one else seems to have a clue.  It's okay, though, because I know that I give the very best effort that I can each and every day (which sometimes is limited to taking my pills and letting the dogs out) and that I'm not being lazy if I need to spend the day in bed, or if I have to use my handicap hangtag, or if I have to use a wheelchair at the airport and that all these other folks can choose to accept me with my "invisible" illnesses or get a life.  Until you've walked in another's shoes...      

Woody Auerbach
7:57 PM on Friday, September 10, 2010

The print here is gray against a white background & I find the comments difficult to read.
As for the title of this blog, "Shaking the Stigma of Sickness", I don't relate to it.
I get a series of IVIGs, every 4 weeks, but don't consider it a "stigma of illness.".
I just accept that it helps me & I "roll with the punches".
Thank goodness there is spmething that benefits me.

Chrystal Byrd
8:38 PM on Friday, September 10, 2010

Woody, I think it is awesome that you have such an optimistic outlook.  I, too am so thankful that modern medicine helps me to function.  When I saw the title of the blog, I thought of all those 'side effects' from the gammaglobulin that cause me to drag a bit here and there and the harsh reality that sets in when people who are relatively well cannot relate, whether it's because they cannot 'see' back pain, joint aches, nausea, etc. or b/c they feel (just as we sometimes do!) that is is ~always~ something. The side effects from the medicines and illnesses we experience vary so widely, and the field is still certainly begging for more research, it is hard when you do get hit with one (or two or three) that really throw you for a loop, you really kinda' wish people were a bit less skeptical and a bit more compassionate=)

5:00 AM on Saturday, September 11, 2010

First I have to say- for all of us on this blog - it is amazing what we do even with illness- there are many  well people who do not attack life as much as we have.

We've worked as much as we can, raised families, traveled, and all with a diagnosed or undiagnosed illness.

I have come to understand the "You're sick  again!" comments even  when they have come from people in the medical field- one of my best friends is an RN who often said that to me.  

Lack of knowledge is the problem.

Short responses are  better than a protracted explanation. Add a little humor to it, if you can. I used to try to explain it to my friend m, the RN and finally gave up.

Instead I would just say with a smile "Well you're an RN_ you musthave studied the immune system." It would baffle her.

I realize what I have will never go away - that I have to work around it.

All of you, like me, have been to what I call "the broken arm MD" = that is, if I walked into the office with a broken arm I could be diagnosed quickly, but all  of us have invisible illnesses - see the Zebra!

Recently my best friend, the  RN,  suffered an asthma  reaction from  an infection from an tooth implant and the medication prescribed. It is permanent- and though I have told her to see an imunologist- she resists. She has bronchitis 4 times a year and the medication for the infection  harmed her immune sysytem.

She does not want to think about IVIG.

And she suffers..  Always healthy and full of energy, she now understands what people  with chronic pain and illness go through. Sometimes you have to walk in another's shoes....

I have always had the tirednes from PIDD,  but did not get diagnosed until 57. So, I am grateful I have an answer.

What I find very difficult is the chronic pain I have starting with a back injury when I was 32. ( I am 63 now and worked as a teacher until 49 when constant pneumonia sidelined me) .

I want to be able to drive everywhere - and back surgery a few years ago was supposed to resolve this. It did not and now I have failed back surgery.

I had to leave my part time job and I had to give up full time babysitting for the grandkids - that was a bigger sorrow.

I have sciatica that comes and goes and I get nerve blocks. Today I see a foot MD because there is is disagreemenet as to where the 5 month pain in my foot is coming from.

When I was out of work for 2.5  years with my back and juggling single finances and single mother hood, someone gave me a banner that said  
" When life hands you lemons, make lemonade." So true so true

You just have to understand others do not understand and go from there,
What has always helped me is the old adage "Every dog has his day"-

which translates to we will all have a burden in life- some visible, some not and everyone gets a turn at a burden.

ps. I find the gray background hard to read also


5:07 AM on Saturday, September 11, 2010


Just went to this site and clicked on UTUBE link for 7 spoon theory


Thanks for suggesting this

Piper Redman
6:18 AM on Monday, September 13, 2010

Reading these posts makes me realize that we are all very strong willed at heart!  I myself do not have an immune condition but my daughter (who is 10) does.  She was FINALLY diagnosed at the age of 2.  So, we have always pushed her to keep going, don't let this condition win (she has CVID).  She is the most strong willed little girl in the world. We constantly go through the comments "she doesn't look sick, does she have AIDS, does she really need to be around other kids, etc."  I always tell my daughter that GOD made her this way for a reason and he wouldn't have done it if he didn't think she couldn't handle it.  So, every week we both suck it up and go through the infusion process and at the end of the infusion she always tells me, "mom, we finished another one now lets go have fun!"  My daughter, even at the age of 2, has taught me to keep going no matter what.  I have degenerative disc disease and have undergone two back surgeries in the past 7 years but still have lower back pain but will not allow myself to take pain meds because I have to be strong for my daughter and do not want anything to impair my judgment or my ability.  I still work 40-45 hours a week and still play mom at home to my 10 year old and my 18 year old.  My son, the 18 year old, is the best! He tries to help in every way possible with keeping the house clean, starting dinner, and taking 18 hours of college (close to home, of course, he didn't want to leave his sister!).  My husband does too but he hates to see our daughter go through the infusions, etc. because he says he can't stand to see her stuck and go through the side effects of the meds.  Oh well, we are one big messed up family but we go through it together.  And don't let anyone say "oh, your poor family" because we always say we are no different than any other family we just have more obsticles to jump and we always seem to land safely on the other side with both feet!  This is our life and we only have one so live it to the fullest no matter what the struggle, it is worth it.

1:20 PM on Friday, October 01, 2010

What do you call your Immune "issue"?  Disease / Condition / Illness or what?  I find I use different terms and some bring about more questionable looks than others.  

Chrystal Byrd
4:41 PM on Friday, October 01, 2010

I have always just referred to it as a genetic primary immune disorder. Most of my family don't understand and don't bother to try.  Perhaps they are afraid to ask me the exact name of my condition and what it means.  Perhaps, "out of sight, out of mind?"  The Spoon Theory was great in that it helped those family and friends who wanted to try to understand.  

Debbie Moreno
7:36 PM on Friday, October 01, 2010

First time to visit the blog - never really participated in this type of thing - very interesting reading and it helps to hear what others are doing in coping with their disease.  I have multi-focal motor neuropathy (MMN,similar to CIPD) and have been receiving IVIG for over two years now.  This is truly a miracle drug.  It has helped me regain a somewhat normal life.  I had to retire - but have now returned to work part time.  Still seem to have some side effects - interesting one this month - kind of like sharp lower back pain (sciatica?) - just isn't letting up this month.  Is this a common side effect?  I'm due for another treatment on Monday - hoping the "fresh" infusion will relieve the back pain.  Still wouldn't trade this infusion for the world - Thanks to all for sharing - really helps!  

11:13 AM on Friday, February 25, 2011

I have sympanthy and empathy for all of you.  I have been battling this for only several years I'm 56 or 57.  You know at this point I can't even remember.  It took years for work to understand and I still don't believe they do.  I had my 7th nerve block done yesterday as my discs are compressing in my lower back.  I am so trying to see the "twinkle" but having to lay on the couch now for 2 weeks and endure the pain along with my infusion this week.  They forgot I was coming and it was a big mess.  Its a wonder when you have to tell the nurse something they forgot while the doctor is putting in the IV.  

And the end all - my boss asks me what "happens next I a mean are you just going to be like this forever or continue to get worse?"  There is a day brightner for you.

I didn't have an answer.

1:44 PM on Friday, February 25, 2011

The answer is yes - you arel iving witha chronic condition.
See my blurb above "Every dog has his day."

A friend also gave me a good answer- "No one wants to be sick."


Nynah Mason
10:40 PM on Monday, July 09, 2012

On what and how to tell people:  Everybody will come up with what works for them.  I tell people I have an immune deficiency. My immune system took early retirement and neglected to consult me on that decision.

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