Christine — this was so well written, and I really identify with it.  Thank you.

I only wish I was able to speak, explain and write so eloquently. Each and Every word fits me, with my daily fight.
You’re an inspiration to me. I strive to become tithe speaker you are and unfortunately, I am Just like you about the pain behind the smile. They all say “You don’t look sick….”. Thank you for this article, I will share this about “us”. You’ve said it so perfectly to fit “us”.
Have a beautiful day. Xo

Hi Christine, thank you so much for sharing your story, it is just like readu=ing my own…I am 32 years old, a mother of 2 young children
and living with cancer for the past four years. I hated the look on people’s
face when I told them; I hated the phone calls, the pity looks, the flowers the
cards… I wanted to be healthy not sick. I thought that if I let myself believe
I was sick then I would not make it. I chose to act just like you and I still
am. I use tanning creams; I dye my hair, cut it short… I choose the people I
tell how I feel and I only go places when I feel up for it. It works for me; at
least it has for the past 4 years. But recently my workplace has asked me to go
for a medical. They said they couldn’t hold on to my job indefinitely. I don’t
know if I feel sad, mad or just think it’s my fault for not telling people how
I really feel. Cancer is so much part of my daily life; I don’t want it to take
over. Hiding it is my way of coping. I try so hard to LIVE that I don’t want to
talk about anything that would remind me that I am on reprieve. Why should I be
penalized for trying to get my life back? For enjoying myself when I feel good?
I have lost so much already… I just don’t know how to handle the idea of
loosing my job just yet. I have lost so much already. I understand they need to
move on, but I wish they would just leave me alone. Cancer is not flu. It is so
hard, it takes so much from you, physically emotionally and yet you can’t
complain because you survived. I am thankful, I wake everyday thinking how
lucky I am, I have 2 adorable children, a loving husband and great friends and
family. I am a positive person and I try hard to concentrate on what I have, on
what I can do rather than what I can’t do. I think that’s why I act healthy and
hide at home when I’m not. I feel I have won a little battle each time I
accomplish something, and I don’t think I should hide it then… I wish I had a
friend who was as sick as me to laugh about it sometimes, but I don’t. I don’t
feel sick but I am…

I want to make a t-shirt that says, “But You Don’t Look Sick!”  Not so much to draw attention to myself or garner sympathy or, by any means, to be obnoxious, but to perhaps make people think a little more about invisible illnesses.  There is so much ignorance out there about what it means to be chronically ill, especially the fact that the ill one doesn’t necessarily show obvious symptoms. 

I walk with a cane, at times wear a variety of braces, and park in Handicapped even though I know many eyes may be watching and many minds may be thinking – What is She doing in a Handicapped space?  But (in general) I don’t think twice about it – these things help me do what I need to do and have become simply a normal part of my lifestyle.  I’ve been coping for so many years with my illnesses that I mostly forget about what others may be thinking about me.  I don’t owe anyone explanations about why I do what I do or how I do it.  It is very painful, however, to know that my invisible illnesses give others an excuse to judge me, make assumptions about me, decide who I am before they even meet me.

But I also only go out when I feel I can handle the challenge of being out in the real world, where anything can happen, and often does.  I try not to have expectations about how my outing will go – it’s always possible that I won’t even make it out of the house let alone the driveway and into town.  Disappointment can devastate me so I try very hard to not expect anything and to accept whatever comes my way.

I rarely leave the house, but I don’t think folks notice that.  They only notice that when I’m out in public, getting things done, acting upbeat (when able), talking, laughing – that I don’t appear ill at all.  I’m not sure it crosses their minds that when I get home I am alone and left to take care of myself, my home, my chores by myself.  I am sure they don’t realize that I’m lucky to even make it home in one piece, that I may arrive home in tears from pain or the shear emotional toll it takes to accomplish my tasks, or that yes, I made it home, but I may not be able to unload the car or carry things beyond the inside of my front door or that I may have to go to bed for the rest of the day and possibly the day or days after that.  I’m not sure they consider that I really need help to get through each day and that I don’t have any.  Yes, it’s easier for others to not think about such things.  But I don’t blame them – I don’t want to judge them for how they cope.

And the older I get the more I realize that I’m not the only one out there suffering.  Everyone suffers to whatever extent, everyone hides something when they walk out the door, everyone keeps secrets about their lives.  When I talk to folks I am often amazed to learn what others are also coping with; it’s not just me.  Thousands of us have invisible illnesses or know other people who do.  It’s when we share with others parts of our lives that they can’t see that we realize just how much we may have in common.

But I still want a t-shirt that says, “But You Don’t Look Sick!”, because there are thousands who also feel very comfortable with their judgments and assumptions and their amazing capacity for ignorance.  Those are the people I’d like to challenge, if only a little bit, to think before they jump to their conclusions.

Thanks.
Kate

I really appreciated reading the article and the comments below. They are all inspiring to me. I have to share my best one with the handicap parking though. I was in K-Mart parking lot and parked in the handicap. When I got out and started walking to the door this lady came at me screaming that I was parked in the handicap and that I should consider there are those who really need that space. I was patient and looked at her as she caught up with me and said yes, I am aware of that. I too am handicap, though you cannot see mine. She called me a (bad word) liar and to show proof to her. I did. I pulled out the license for my handicap sign. She read it and looked at me and said “you don’t look it” what exactly do you have? I asked her if she was a police officer or a guard over the parking lot. She said no. I said then it shouldn’t matter to you what my problem is. The fact that I have a sign should be sufficient to you. I am so sorry you feel compelled to make me feel insignificant today. I hope you have a wonderful day, now if you will excuse me, I need to get the one thing I came for so I can get back home while I can.
She was astounded. At that time a guard from inside the store came out and asked if there was a problem. I said no. She said I was parked in a handicap and had stolen someones sign. I showed my proof and he looked at her and said madam, I suggest you mind your business. This is legal and binding proof that she can park in a handicap and you should really control yourself. It is not your business to decide who can and who cannot park there. Good day. And walked me into the store. I thanked him, he asked if I wanted to file harassement charges. I said heavens no. She just needed attention today I guess.
I went on my way, got what I need and went back home. Some people just do not understand the “you don’t look sick” fact.
Everyone, have a great day!

LOST IN TEARS…! THANK YOU!

Wow, thanks for  putting every thought, feeling and emotion of my life down in writing, I wish I could think clearly enough right now to write a whitty response but the tears falling down my face are blurring my reality right now.  It seems that nobody ever “gets”  what my life is like, not my Spouse, who Lord knows, he tries to and definitely not my family, so when I read something like this or like the spoons article, my heart just breaks to know that people do understand me but then it breaks even more to know that other people are experiencing the same hell that I am going through.  ty again for the understanding and courage to put our private hell into words.   Scleroderma, Fibromylgia and Polyarthritis (long list of other things lol) are my hell on earth.   <3 Mic

This explains me. Even my homebound teacher thinks I’m perfectly fine. I put on a smile just so I don’t have to explain what I’m going through. After a while I feel like people stop believing you because there is no way someone could be so sick. It helps
to know I’m not the only one who has to put on a fake smile everyday

You are amazing ! Just like everyone else said, you just put my messed up life into words! Thank you ! I don’t even know what to say other than WOW ! Right from the heart is where your words came from and I appreciate it so much. Words that I wish I could say and have others actually say “I get it now”. You can only act for so long then you’re like scew it, this is me, take it or leave it. Most will leave it because the are selfish and refuse to try to understand. We, the ones with a chronic illness, are drug seekers, lazy, and weak in the eyes of others. I will give you one day, just one living my life and tell me that I’m any of the above. Even the closest person, the one that loves you the most can’t fathom what every minute of your day consists of. You hit the nail on the head when you said you literally have to prepare your every move for the day the moment you wake up. You can’t miss one thing or the entire day is hell, more so than it already is. I get a lot of crap for always running behind, which I hate more than they do. I can get up at 4 am and still be running late so why do it. I stay in bed until I absolutely have to get up because I know what’s in store for me…every day of my life ! The joy of living is no longer there, why would it be ? I have 4 kids, 2-18, they certainly don’t understand and I guess I wouldn’t either. Other moms can do it, why can’t you ? I WISH I COULD, trust me. My body doesn’t allow it and my head can’t handle it. Meds anyone ? I work, on my feet all day, at a busy physician’s ofc, then off to ball games, practices, dress shopping, or whatever else is required to be considered a good mother. Sometimes I have to say no to people that depend on me, that’s as painful as what I live with every day. I wish there was a manual on how to be a good mom and wife while living with FM. I don’t see hiw they can go together but they have to some how, right ? Well, I managed to turn this into a venting session instead of staying on task and giving kudo’s to you for such a brilliant, well written story of our lives..sorry. Thank you again. Your story is truly appreciated and really means alot. Thank you for speaking for all of us, not matter what our illness is

Literally in tears, I’m 30 yrs old mother of 4 girls 13,12,5 and 4 as well as a fulltime caregiver for two strong women as yourself also with autoimmune disease for the last 5 in half years I have been going through hell I thought,  I suffer from pain of both wrist (carpul tunel) anemia, ankle, foot, muscle spasms, the loss of 2 pregnancies, hair loss, it got so bad I started passing out while I was driving I had no idea why I was 24 at the time I went to my doctor in tears she sent me home with antidepressants and told me I was to young to have all these issues I was just depressed try walking she said for the almost 70 lbs I gained after my pregnancy I didn’t even have the energy to argue with her but my husband was so upset I wanted to give up I just had a baby and I could not care for her not until I had a WIC appointment and they did an iron draw my iron levels were so low he didn’t how I made it there my husband took me to the hospital anemia after blood work hypothyroidism I took the pills everyday feeling a tad better but always in pain weak and confused and it was getting worse every year not until 4 months ago two carpal tunnel surgeries later and the time I lost playing with my girls because I could not function fearing I would lose my husband because I got so fat my hair was falling out I would get so upset overwhelmed I could not control my moods trying to deal with the pain stress I was refered to a rheumatologist and God bless he heard me out he ran so many test he was right on autoimmune thyroiditis  (Hashimoto’s Thyroiditis)  the hypothyroidism was just the condition inflammatory arthritis vitamin d deficientcy life for me will never be the same I thought my life was over but it’s not it’s harder but I’m learning to have peace with it living day by day I have so much more compassion to those who suffer from illness physical or mental because I know how it feels it’s so great of you to share your story thanks 

The frequency of the usage of the word “hate” caused me to stop relating to your experience.

I have MS and can really relate to this. I never “look” sick, even when I fall I just look drunk or clumsy. Actually had a sister in law who believed I was making up dropping so many things.  Sorry my hands don’t work…take it up with my latest doctor! I once broke one of her glasses and said “sorry it is an MS day”.  I got back “it’s ALWAYS an MS day for you”.  Interestingly enough, she hit the nail on the head. Wish she could have heard herself.