30 Things About My Invisible Illness You May Not Know

 

30Many prominent bloggers were asked to participate in this simple blog post meme to help spread awareness during Invisible Awareness Week (September 11-18th) I think it is important to participate in these things because as much as this website, my speaking and writing have brought me into the public eye, there is still so much even my closest friends and family do not know. That unfortunately is the “nature of the beast” with chronic invisible illness.

-Christine

30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Many people think I only have lupus, but as I usually say “Lupus never comes to the party alone” and I also live with Fibromyalgia, Sjogrens Syndrome, and Raynauds.
2. I was diagnosed with it in the year: I was diagnosed in 1992, I was a teenager when I was diagnosed.

3. But I had symptoms since: I can remember having symptoms as young as 12. I was always tired, unexplainable fevers, aches and pains etc

4. The biggest adjustment I’ve had to make is: learning to say “no”. Learning that I do have limits and I have to take care of myself. If you don’t have your health, nothing else matters.

5. Most people assume: that I am a happy, upbeat person because of the writings and advice on my website, or because of seeing me speak. I am that person but that is only one layer. I do hurt, I do cry and I do have hard times when dealing with my illness. I am human and have a full range of emotions. I think living with any chronic illness comes with highs and lows, days when you are strong, and days when you need strength.

6. The hardest part about mornings are: just getting moving at first. I feel like “the tin man” from The Wizard of Oz. I am achy and very tired. It would be easy to just go back to bed, but I have a beautiful 4 year old that makes it impossible. I love sharing mornings with her and she is my motivation. I also have to remind myself that once I get moving, even a little bit, the pain and stiffness will get better.

7. My favorite medical TV show is: House of course! I always loved the show from day one, even before it became the cult classic amongst us Lupus patients. I love trying to figure out the diagnosis. I figure over 18 years of being a patient should earn me a medical degree! I am waiting for the episode where the whole episode is an actual lupus patient and not just a “throw away” line in the script.

8. A gadget I couldn’t live without is: I could never live without my microwave heating pads. The moist heat is perfect for my sore muscles and it is quick and easy. I love gadgets of all kinds but I guess I am answering as far as health is concerned. But my favorite overall gadget is my Ipad. It keeps me connected to the butyoudontlooksick.com community and my family and friends even if I am stuck inside, on the couch, traveling, or in bed!

9. The hardest part about nights are: Getting my body to wind down and relax. It is hard to not want to try and stay up late and get “more accomplished”. It is so easy to always feel so behind when you have a chronic illness and can’t do it all. I have learned though that if I use up all my “spoons” today trying to get everything done with every last drop of energy that I have, then many times I will be paying for it tomorrow. So learning when enough is enough and when it is time to just go to bed has been the hardest part of my night.

10. Each day I take 17 pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: I believe that anything that helps you feel good and doesn’t hurt yourself or others is ok. I believe you need to make smart educated decisions, but in the end the decisions are yours to make. I also believe that in the end there are so many factors that go into our healthcare management why would we shut out any possibilities?

12. If I had to choose between an invisible illness or visible I would choose: I would choose to have an invisible illness. I am used to my illness being invisible, I have become good at advocating for myself and I have learned to cherish the days were my illness isn’t as obvious. If I am feeling well my health does not need to be everyone’s business, the down side is of course that when I am in pain, or fatigue etc I do need to ask for help which can be the hardest thing in the world.

13. Regarding working and career: When your passion becomes your purpose there is nothing you can’t do. We might think we choose our work, or career but I do believe that god knows what is best for us and finds a way to put us in that path. What I wanted to be, would have never been right and what I have become is more then perfect.

14. People would be surprised to know: That I actually can be very shy. I get bad anxiety and I even have stage fright sometimes. I know it is hard to believe since I put my life out on the internet, speak in public often and even have stripped down to pajamas on stage in front of hundreds… but yes before I do any of those things I am a nervous wreck!

15. The hardest thing to accept about my new reality has been: The unknown. Not knowing when my next flare might be, or not knowing if the next cold can become a hospitalization. Not knowing how long this remission will last. Will I feel good for a long time? Not being being able to make plans. Not having enough energy to achieve all the dreams my crazy heart has dreamt up.

16. Something I never thought I could do with my illness that I did was: I never thought I could help my own life with Lupus let alone many others. I am honored, humbled and rejuvenated whenever someone likes something I wrote, claps for something I say, passes on an essay, follows me on twitter, or even “likes” butyoudontlooksick.com on facebook. I truly spent much of my early twenties trying to figure out what to do next, what to do after my diagnosis. What do you do when your career, your identity is ripped away from you? I knew I could talk, I knew I loved to write and I knew I was passionate about making life with lupus just a little bit better then it was when I was diagnosed. There was no big plan, there was no vision, just the desire for no one else to walk the path of living with an invisible illness alone. I knew doing something was better then doing nothing. But I never dreamed I could connect with people around the world. I never dreamed I could use technology to form a community of people who could help each other with tips, support, friendship and “spoons“.

17. The commercials about my illness: There are no commercials for Lupus. (my primary illness) It is still a very unknown and misunderstood illness. The journey of awareness has just begun.

18. Something I really miss doing since I was diagnosed is: Acting in community theater and dancing. I spent most of my young adult life in rehearsals and immersed in the theater life. I miss that creativity, I miss the sense of community.

19. It was really hard to have to give up: My independence. I am a very independent spirit. I am strong willed, maybe sometimes too strong. It has been very hard to learn to reach out and ask for help. There have been time when the help needed was obvious like pushing a wheelchair, but other times the help was not so obvious and I had to swallow my pride like when just asking to sit through an IV treatment just because I didn’t want to be lonely. Everyone assumes I am so strong that I can handle anything, but I know now that best choice is the hardest one. For me, the best choice has been learning to let my ego go, live honestly and to ask for help.

20. A new hobby I have taken up since my diagnosis is: I actually haven’t taken up any exciting new hobbies that I can think of right now. I would LOVE to learn more about photography since I love taking photos of my four year old daughter. I also would love to take yoga classes and learn more about meditation.

21. If I could have one day of feeling normal again I would: I would run the NYC marathon. I know it sounds crazy, but it is something that I always wanted to do, but always knew was out of my reach due to my illness. One of my secret little dreams. Maybe I shuld start with a run around the block?

22. My illness has taught me: Who my real friends and family are. The people who support you every day, for better or for worse…. in sickness and in health those are the people who truly love you. If you want to know who your real friends and family are, get sick and see who stays.

23. Want to know a secret? One thing people say that gets under my skin is: I hate when people say “Oh, I know what you have been through”, or “I know how you feel”. The sentence usually starts with those words and ends with a tale of a broken leg, or a bad back, or a particular horrible flu. Try having them all at once- every day, then tell me you know how I feel.

24. But I love it when people: I love when people offer to help without asking. I love when friends and family offer real help, flowers are sweet but they die quick. Some of the best gifts, or help have been when my mother has done my laundry without asking, when friends drive me to doctors appointments, or when I have received restaurant gift cards in the mail. Anything that helps save a bit of energy and gives me more time and energy to focus on my health and my daughter is the best gift anyone can give.

25. My favorite motto, scripture, quote that gets me through tough times is: God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.

26. When someone is diagnosed I’d like to tell them: It will be hard, but it will be ok. I tell them that they know their bodies best, they need to be their own advocates, and they need to be strong in spirit even if their bodies are weak.

27. Something that has surprised me about living with an illness is: I have actually watched medical advances happen in my lifetime with Lupus. The life of a lupus patient has drastically changed from the time I was diagnosed until today. There is still so much work to be done, but it has been surprising to actually see and live these medical advancements and breakthroughs.

28. The nicest thing someone did for me when I wasn’t feeling well was: My parents love is endless and has no boundaries. They do nice things constantly, too many to mention or count. But knowing I can count on them is the nicest feeling in the world.

29. I’m involved with Invisible Illness Week because: If all of us do our part, write a blog post, re tweet this post, share on facebook, pass on info.. whatever. Each step is a step closer to awareness, understanding and acceptance. It is the easiest thing we can do, but collectively will make a difference.

30. The fact that you read this list makes me feel: loved. grateful. hopeful.

 

Author: Christine Miserandino

Christine Miserandino is the founder of butyoudontlooksick.com. She has won numerous awards for her writing. She has been featured in newspapers, magazines and television. She is a guest expert  and community TV host for WebMD.com. She prides herself on being a patient advocate, but her favorite role is that of a mommy. You can find her at @bydls on twitter or on facebook.

©2010 butyoudontlooksick.com
  • jodi flewelling

    Hi; my name is Jodi.
    I stumbled upon this website by happy (lonely) coinsidence. I recently found sickgirlspeaks.com and when I am lonely and too tired to leave the house, I visit the site for support and inspiration. That is where I found you.
    Thank you so much for this heart felt article. I have a genetic nerve disease called Charcot Marie Tooth that is slowly eating away my movement and independence. My nerves are dying from the extremities in and as a result, my legs are dying as well.But you wouldn’t believe it looking at me with muscular & trim legs. People stare at me with mouths gaped open when I stumble by with my cane or roll by in my wheelchair.The words in this article (exept for House on TV) are as if I’d written each and every one. Thank you so very much for putting yourself out there for me and countless others who need these words.
    May you find peace amongst the madness.
    jflew

  • lynne lee

    I have been dealing with chronic pain for 25 years. I love your spoon theory, also this list of 30. I can associate with how you feel. I am in BC CANADA, dont know where you are from.. I recently attended a facilitators training seminar for creating support groups for people in chronic pain. I was wondering if you would mind if I could use some of your questions to motivate conversations in my new group? You ever want to chat, drop me a line. I will respond ASAP! providing I still have some spoons, perhaps I could lend you one.

    Warmest regards

  • Deannegirl

    Christine, reading your post about “30 Things About My Invisible Illness You May Not Know”, I felt like every item you wrote was one I mirror exactly. It is absolutely eerie, spending most of my adult life feeling alone in my illness, like no one else experiences or understands what I feel, and then to find your words ring so true on so many levels it sends chills up my spine. You nearly brought me to tears of happiness today, if only for a moment. Thank you for letting me feel like there truly is someone out there who empathizes with the invisible illness that is Lupus. —Deannegirl, 31 year old mother of a 10 year old, diagnosed w/SLE and Raynold’s in 2011, suffering since 14 years old. I take about that many pills and vitamins a day too, so no judging. :)

  • Margaret

    You are a total inspiration and to read your email had me in tears, you have so much strength and love.
    I have had rsd for 5 years and to get a cuddle or acknowledgement for something iv achieved in doing brings joy to me even the smallestnof little things that would have meant nothing before rsd means the world to me.

    God bless you and be with you always

    X

  • Abby Hunt-Metzbower

    I like many have more guests at my inner party then I would care to have. In November 2003 at 37 years of age I had a gastro attack which lead to testing and more testing. In January 2004 I was diagnosed with Primary Biliary Cirrhois, NASH, and diabetes. Within 3 months I was also diagnosed with Rheumatoid Arthritis and Fibromyalgia. And since then I have had a gastric bypass & lost 124 lbs which put that diabetes and NASH into hiding but I have gained a mass on my left adrennal gland, an enlarged spleen, and osteopenia. When I try to explain to people how I feel I tell them you know that sick achy cruddy miserable feeling you get when you are getting the flu, well that’s how I feel all the time. I sometimes wish I was a little better at conveying my exhaustion. I almost wish I had an alarm or sign that automatically blinked on. “Out of Order” Ding/Ding! But like many of us I will keep going and remember the alternative. Power & Strength to us all!

  • Kimberly Lee

    What do you do when you have no support from anyone. I’ve been so sick with so many things over the years, when I finally got diagnosed my family said I was crying wolf. All of my friends have bailed and my roomate just yelled at me because he thinks that I’m just being lazy. I have slept approx 40 hours in two days. I don’t know why, but I do know its not one of those just suck it up and take a walk around the block. I had the tv going in the background and there was a segment I wanted to see. I literally could not lift my head up to watch it. Other than my cat, I have no one. I’m on several online support groups, but thats not the same a just wanting to hang out with someone who understand and cares. So I ask again, what do you do when you don’t have support, love or undersstading from the people that are supposed to be there for you no matter what. God Bless, Kim

  • springdarlene

    Again, you put into words exactly how I feel but making it so easier to say and explain to others. I enjoy your postings and have followed you for a few years now and I have read the ” Spoon theory” and the ” Girl behind the Smile” to my husband and friends and it helps them to understand more of what I go through everyday.

    Thanks for your words and inspiration to keep going.

  • Nadine

    I love love love this site!!! every time I log on and see the new things posted it is just such a huge relief to know I am not alone, that someone else gets it! I absolutely loved your explanation of feeling like the Tin-Man I tell people that all the time and they just look at me as if im silly but its true you really do feel like the Tin-Man. Some mornings I lay there with my eyes closed silently willing all the kinks and rusted joints to relax and give a little just enough to get me to start stirring so I can get out of bed. I sometimes make myself laugh at all the clicks and pops that my joints make when I start to get out of bed and I crack jokes about needing my oil can. I just want you all to know that id be lost still today if not for this website and all the lovely things posted on here. more often than not I feel so alone and I can get so bitter/frustrated at my body’s limitations that its nice to know a friend is only a click away. your words mean so very much to me thank you for all that you do :)

  • Valerie

    Thank you for sharing your story. It’s a relief to see there is a community of people who understand “imlnvisible illnesses”. I have general anxiety, social anxiety, chronic depression, chronic fatigue, possible ADD, and I am pretty sure most of it is based in borderline personality disorder… None of the above have ever been officially diagnosed. I first noticed and started looking into my initial challenge – depression – around age 14… I am now 32. I have wasted a lot of time since discovering and learning about each challenge in trying to make people understand, or even believe me. I now only talk about any of it when I have to, and I never mention borderline anymore because it always makes people uncomfortable. I have spent half my life trying to self-treat, because I saw no other way, and I cherish the times when I succeed at it, as they get me through the worse times. I hope that I never have to resort to seeing a medical professional, as the very thought gives me – ironically – anxiety. I have spent years in research about my mental disorders and chronic fatigue, and by now I probably know more about non-medicinal treatments than many professionals. And there I go rambling… A hazzard of ADD. Thanks for the article, and thanks to all those who have commented. Peace to you all.

  • Nicole

    I know a lot of people loved “House” b/c they’re spoonies, but for me, I could never stand it for that reason. I’ve had that doctor, I think we all have. The one who never believes a word we say, is arrogant, self-righteous, and keeps guessing, throwing all sorts of completely unnecessary treatments at us then throwing up their hands and deciding “all people lie”, so clearly, we cannot be in as much pain/discomfort as we claim.

    That being said, I completely understand why many spoonies (lupie spoonies, in particular) love the show. In some ways, you could construe the continual references to a form of advocacy, as many people are still learning about the disease’s very existence, may choose to research it, and even if not, will certainly learn about the litany of symptoms that come with it. Let’s just hope they do not dismiss the disease out of hand because of the dismissive tone the characters use towards such a serious illness; hopefully, they are smart enough to read between the line that if there are some many serious symptoms associated with the disease, it must be a big deal. One can hope….

  • Jaema Gomez

    Just wanted you to know I read this list because a dear friend of mine has been diagnosed with Lupus. I am trying to come to terms with this life-changing verdict, and am reading everything I can get my hands on. Your ‘Spoon Theory’ certainly explained the disease well! Thank you for the list and the spoons.

  • http://www.insicknessinhealth.blogspot.com Barbara Kivowitz

    Not much I can add to these wonderful comments to this brilliant and moving post. You gave us a great gift in sharing so honestly about yourself, and in offering us the invitation to consider the same questions about our own lives. You took me to a new place. Thank you.

  • http://myjourneyw/lupusonfacebook Christina

    Thank you. I don’t know what else to say, I will be back to read more, and I am going to borrow some of your questions to share. I am trying to help myself thru diet. With the help of my family doctor I have found a certified doctor whom has gone back to school to learn about nutrition and how it can help in the medical field. Long story short that is what I am trying to do with my facebook page is to do a day by day journal and I am hoping other Luppus or just any autoimmune person finds it and adds support and advice. It has been heard because I am unable to stop working, I am in Real Estate, not to stressful there (sarcasium) but at least I can hide when I need too. and if I loose a client, well I make sure they are in good hands…..I am looking forwardto the day I can move closer to my oldest daughter, because even with her busy life as new wife, new working mom, and law student, she finds the time to call me everyday and when I am down there they understand when I am having a bad day. Your right on finding out who your friends are when you are sick, it is amazing mine are more strangers, newly met people. My son is in deniel and refuses to listen. My other daughter, well she will help when I can pay her, and my dear sweet husband, he tries, he really does but I am in competition there with himself. Atleast he can admit it tho, his whole family does, they are all self obsorbed and there isn’t much they want to do about it, so I do find myself alone alot, so I am working on finding the perfect pet aka dog to train to be there. Sorry this was just to be a Thank you, and I got carried away. I will keep reading and learning thank you.

  • Aimie

    Awesome motto

  • Carol

    Thank you for this writing. I have mitral valve prolapse syndrome with a dysautonomia (they should shorten the name) and the words people used all the time when I started to find answers (because the doctors gave up on me “Take to your bed.”) were, “But you don’t look sick.” It was hilarious to find your site with a similar name. I’ve learned to live with in peace, take meds to cover the symptoms, and don’t think about it.

  • Stuart

    Brilliant, humbling, transparent and so compassionate. I live with fibromyalgia, bi-polar condition, arthritis, and food allergies. My children are grown and though I cherish them dearly it is my little 5 and 2 year old grandchildren who are such precious ones. I could relate to most of your points and have learned many of these lessons myself also through experience. I still struggle with knowing my limits, saying no and asking for assistance. Thank you for your courage to speak and live your life!! Stuart

  • http://www.facebook.com/kathi.brill.5 Kathi Brill

    Wow Christine you put down my feelings and thoughts so very well, I have Lupus and I have been fighting it for awhile now over 15 years. I was always the sickly one and if you look back you can see the pattern of doctors treating symptoms way back when I was 12 or so. I am 54 now. keep strong and if you decide to do the NY marathon, start by 5 minutes a day for a week and build each week to 30, then add the evening start the same way 5 min. evening 30 daytime. it’s hard but has kept me with out flares for awhile. Dr. Ho in fort Wayne Ind. told me to do that I thought he was crazy, but I did it in a swimming pool in the dead of winter at the ywca, it worked I got some of my life back!!!

  • Tthistle

    thank you so much! i was doing a search for something else and happened upon your site – just what i needed tonight :) i’ve had one invisible illness after another since the age of ten (i’m 43 now).. for me it started with chronic autoimmune hepatitis – but like you said these things just don’t want to come to the party alone! anyway, i totally get the frustrations and am also grateful to have a super-supportive family .. and i thank you for your willingness to use your gifts to be an encouragement and an inspiration .. only people who have actually walked the walk get to talk the talk

    tracy

  • Lahoma

    Thank you for writing this – I suffered for 20 years with undiagnosed pernicious anemia and now have permanent nerve damage, along with celiac disease and hashimotos disease. Even my doctor tells me that I “don’t look sick”…it is difficult to get people to understand, particularly when your disease is not only invisible, but something that most people have never even heard of. Apparently even physicians don’t know what the word “pernicious” means anymore, let alone normal people. They all think that since I get B12 shots now, that should mean I am feeling great and I am all better. Perhaps 20 years ago that might have been the case. I think many people think that if there is a “treatment” that works for your illness then that means that you are just fine, they don’t realize that even with the treatment you might still feel just rotten a lot of the time.

  • Becky

    I loved reading this. I was diagnosed with fibro about 10 years ago, everything recently started getting worse/different and unmanageable so I started researching. I am another believer in being the best advocate you can be. I have found several specialists who are supposedly the ‘best’, and I am in there with my new discoveries.
    (I also tend to speak in circles, fragments and runon sentenced when I have a lot to say) :-)
    After realizing that this was not ‘just fibro’, I had numerous tests repeated. Within 6 months, by body decided to develop a nice amount of the ANA levels. My rheumatologist said that my results are not conclusive but she will treat me for RA and Lupus. I have been trying to tell my husband that my body feels like it trying to kill itself, or fight itself from the inside out. He thinks I’m dramatic and need/want attention.
    I recently found a great holistic chronic disease specialist and we are working on all of the toxins in my system along with my destroyed neck. I believe that 20+ years of emotional abuse and overworking my own self has left me feeling pretty defeated today.
    Thank you again for writing this; I have been trying to start my own blog, mainly as an outlet for my thoughts/frustrations and off the wall random thoughts. I am more concerned with others reading it, and more of the same ridicule that has come at me, as in the past..

  • Krystal

    I always feel so “at home” when I speak with or read others stories that live with invisible illnesses. I love your view on life and realizing how all of this has created a new purpose in you. I have begun coming to the same realization in my own life as well. I have a rare neurological condition called mal de debarquement syndrome, advanced tmj disorder, spinal problems and osteoarthritis. I struggle with how to share and explain all of this to the people around me in such a way that they truly understand it without feeling judged. With invisible illnesses we are fortunate to look healthy, but it makes it harder for others to understand our inner pain. I have found that as I challenge myself and overcome my fear of judgement and exposure and share my story, more people than not have said I have allowed them better perspective on life. For that, I am grateful. “the greatest wealth is health” and that is the message I hope to relay. Appreciate the simple blessings we have because no amount of money or material objects in this world can buy that. Thank you for your site and a place for people to share.

  • joanne p.

    Hi christine. How do you get your friends and family to understand you are not able to do so many things taken for granted? I have fibromyalgia,osteoauthritis, and hemoglobinuria. I am tired and in pain all day, but have a family that is used to me doing everything for them. I also worked full time and made decent wages. Now my husband tells me to go back to work (I recently won my disability from social security). He doesn’t believe I can no longer work, that I tricked three doctors and a judge into believing I have a painful disease. I try so hard just to do daily chores and get exhausted, not to mention the pain it causes. Please suggest some help in getting my family to understand. Thank you.

  • Dana

    This is so inspiring and your wisdom really shines through. Thank you for sharing.

  • John

    Having something wrong and not being able to find out what it is…is agonizing….Have my suspicions unfortunatley I can’t hardly work and Have no insurance to go the Dr. It has cost me financially and in my personal relationships leading to a divorce. Her and several Dr.’s say it’s all in my head but I know it’s not. I went from a middle class productive person to losing nearly everthing because of it.

  • http://www.explore-oil-pastels-with-robert-sloan.com Robert Sloan

    I only found out about this today, so I went ahead and blogged it for myself. LOL – I have no sense of time anyway, if I’d heard about it sooner I might still have forgotten to write it up till today.

    Thank you for doing this. Thank you for spreading it to other bloggers too. I hope a lot of people are more understanding after reading this – it’s another of your best essays. Well done!

    Mine can be read at http://robertsloan2.livejournal.com – hope you enjoy it!

  • unicorn

    More great stuff from the Spoon Lady. High Five, Christine

  • meadow

    OMG, Christine!!! I can’t BELIEVE how much we have in common! Not in the same chronic illness and I definitely can’t speak for your experience, rather in interests and how I share. My cousin was just diagnosed with fibro. I have shared my story many times with others listing off 17 things out of my list of 20 you just did! I have found these are common questions amung people i know who don’t know what it’s like and assumptions made. One of the things that angered me the most was being at the grocery store, buying a money order and some stamps. The lady asked me if I could please not lean on the counter and move over until I was done to let her in. What she didn’t know was I was about to lose my balance and my legs were almost ready to give out. I was shaking so badly I could barely write but because of my age and the fact that my illness is hidden she assumed I must be fine. Spoon Theory has literally changed my life. I can’t thank you enough for what you have done for so many of us. You have brought so much love and support into my life by being courageous enough to share openly. I stopped hiding and started sharing openly on my FB wall. In doing this I have “collected” a list of spoonies that also lived silently about their illness. Some have chosen now to speak out and some choose to just share with me. I am so grateful to be able to be there for them as helping them gives me the emotional courage to continue and helps me to be a stronger and better woman than I was before. Each day I learn something new and each day I am now grateful for something even at my worst. Once again…thank you for sharing!!! Love and Light, Meadow

  • http://www.lupusinternationalblog.blogspot.com Joanna J aka Lemon-Aid

    Ahh, the microwave heating pads– Those things are the greatest!

    Thanks for sharing your list with us. I have lupus and pretty much all the stuff that goes with it. You have a great attitude and have done a wonderful job of raising awareness. Thanks you.

  • Hannah

    I especially love 15 and 19. I love that you can say exactly what I’m thinking, but word it much better than I ever could. That is why I often repost your articles and have the spoon theory on my wall!

  • lara

    thanks so much for your site, and your INSIGHT! it’s such a comfort to know that- though it sucks that you have it– you do get it.

    shout out to all those of us with un-declared invisible diseases! struggling with symptoms and clawing our way through the morass of the medical world. A clatter of spoonies with no-names!

    Folks-here you are among friends

    thank you.
    peace
    lara

  • Karen

    Christine! Thank you sooo much for doing what you do! I was diagnosed in Feb. 2011 with SLE and DLE. There is a whole lot more wrong now; not really sure what it all is, pain, exhausted, pain, no sleep.

    I love the Spoon Theory; I’ve sent it to a couple friends…it really helps explain what I could feel like on any given day.

    I just found you, and plan on staying here!
    Hugs,
    K

  • Kristen

    On this year’s season premiere of House the DX is…drum roll please…LUPUS!

  • Nanci Tomasetti

    I love this site and the topics you cover. I’ve been “sick” since I was 5; at 17 I was realy sick and my beloved Dad (who was a surgeon) could not find out what was wrong with me. After a year I “got better”. But I was sickly and managed to marry, have 2 children, get divorced, go to work and remarry the most wonderful man in the world. My health went into a tailspin in 1990, 4 years after marriage and John just stood by my side. I had to “retire” in 1993 (I was 48) and have never gotten better. My children and stepchildren are wonderful and I must say I have COMPLETE support from my family. I found out who my friends were very quickly and along the years I found wonderful friends, many of whom are not sick at all but they seem to understand what I go through on bad days. I know that I am lucky, even blessed to be surrounded by people who understand my many illnesses (SLE, fibro, diabetes, OA, osteoporosis, Reynauds, Sjogrens, problems with my thyroid and pancreas, etc.). Many of my 1st cousins have autoimmune diseases, including Lupus! I’m 66 and worry about what lies ahead for me because I’ve had so many illnesses and operations. Last year I had a 10 hour back operation where they re-made my spine but I now walk upright, without pain. God Bless my doctor who took the chance operating on me. BUT 5 months after the surgery, I was walking in my house when one rod, then the other rod broke and I had to have the operation alll over again! I try to understand why I’ve been given the burden of this illness. When I get depressed I think of my beautiful older sister who was healthy and died at 52 from pneumonia. My friends say the Universe still has things in store for me. I live in 55+ housing and many of the women call me when they’re sick. I seem to be able to say the right things – I’m the Sunshine Lady for the complex. And yes many times I’m told how wonderful I look so I must be getting better. But that’s usually said on a really bad day. I have learned to laugh at that and at myself. I used to be tall and thin; thanks to 20 years of prednisone I am now short and wide. Life is an adventure and what we get is what we get. Even after all these years I find solice in this site. It’s so good to feel as though I’m a part of something that I know so well. I have 5 grandchildren (17 to 5 weeks in age) and they are what I live for. My 12 year old granddaughter watches out for me and will question my food choices with regard to my diabetes. I don’t “cheat” when she’s around! My sadness is that my daughter lives in France and while I speak with her every day we only get to visit once a year when she comes. I’m too sick to go to her. But I do try to understand that everyone has something and this is what I got! Thank you for listening to me. I feel as though you’re all my new friends and when I read what you write I do say a prayer specially for each of you. I’m grateful that Lupus is something that more people know about. 20+ years ago it was a different story. Yes my illness is invisible, yes I do look healthy and maybe one day (in my lifetime) medication will make that come true.

  • Jill

    i just found out about your website two weeks ago because of the “the spoon theory”. It was really a good way of explaining our condition. thanks to you, i can just forward your article to my family and friends so that they could fully understand my situation.

    i love your article “30 things”. i can really relate to your experiences. i was diagnosed with lupus last year, although mine was just a mild case. I had joint and muscle pains, fatigue and fever for over a month. My family is very supportive of my condition. They try to understand my mood swings.

    As much as possible, I try to hide the pain from them. I never cry in front of them because I dont want them to see that I’m weak. I tried to show them that I have accepted my condition.

    Until now, i am still scared on what could happen next. I am afraid of the possible complications. I fear about my future.

  • http://motivationalmusings.com Greta Jourdane

    Like others here feeling like the tim man is exavtly right first thing in the morning, I say I feel as if Ive been in the boxing ring with Rocky Balboa, constant head pain and living with making up excuses as to why you can’t make it with friends, until eventually you dont have alot of them anyhow. For me I don’t ever talk about fibromyalgia and chronic fatigue, as I feel Im feeding the disease and giving more power just by taking an interest in it. I used to attend meetings, but felt I’d be best not to think about it as being an actual disease, but making out, the pain will go, does help also. I acknowledge the fact I suffer fibromyalgia, but I don’t own it. I have accupunture and Reiki for it and find it helps me very much. I think we all have our coping strategies, but everyday is different If I have a good day I consider it a bonus!! Take care !! :)

  • Sandy Powers

    Once again, thanks so much for being such a great mouthpiece for those of us with invisible illnesses! I have Lupus and Sjogren’s and quite possibly a few other undiagnosed problems and some days just feel like giving up! You are an inspiration to me! I pray that you have many more good days than bad! Thanks for all you do!!!!!

  • http://bydls.com ilandstar63

    Thank you for puting all my words together for me…….Some days i just don’t have the voice or the arms to type them….

  • Madison

    I have Lupus SLE, Sickle Cell SC, MDD (major Depressive Disorder and im Asthmatic. . . . i’m tired. Today was a ’1/10″ day. . . .until i read this. Thanks, and i wish you happiness :)

  • Katie

    You are inspirational. Thank you for sharing

  • Nbooth1

    Like Laura, I’ve been diagnosed with Sjogren’s, fibromyalgia, plus asthma and I suspect that, like the T.V. infomercials, “but wait, there’s (possibly) more!” ;) Not at the stage of turning up positive on blood tests (yet) but symptoms are definitely there. I can definitely identify with so much of what you wrote. In my own humble way, I try to stay hopeful for the future, yet realistic as to my present state of being. It’s a journey of inches, in my opinion. On the less-than-stellar days, I plan short-term, maybe just for the next day or so. Or how I can make my life easier to get through the workweek to the weekend (yep, frozen chicken nuggets and veggies are still nutrition for my three-year old)! On the better days, I let my blinders down and focus on the bigger picture: what family events are happening next month that I’d like to try and attend, or what I’d love to set as a goal for the end of the year. Right now, I’m struggling with the decision of whether/how to expand our family (I would love for my daughter to have a sibling), while butting up directly against the fact that I don’t think I can have another child. Adoption is an option! Something for me to focus on that is positive. :) Who knows what life will bring, but I’m finding reasons to keep trodding that journey of inches. All the best. :)

  • Gregg

    Christine, as always you manage to put to words what so many of us understand and can relate to. I know it is difficult for you to be a mom, wife, daughter, friend and advocate so please take this spoon for later :) . Your work and voice give out so many more spoons to others than you will ever know! Sometimes knowing there is a voice for all of us with one or more invisible illnesses comforts when our voices seem to get lost in it all. Take care!

  • http://enlacamadefrida.blogspot.com Marìa Guadalupe Munguía T.

    I´m a mexican living with no tyroid, osteoarthritis and fibromialgy (I preffer to say “living qith” than “I have”).

    I would like to let you know how amazing you are and how many of those thougths you share in this post are similar or the same as mines. Sometimes is easy to think that nobody understand neither care about what is deep inside of each and every one that are dealing with invisible illness. It takes many a lot of courage to live with problems…bt is even more brave putting yourself on the public eye and sharing and inspire other people to live with all the joy you heart is able. Congratulations for that you really inspired me.

    I`m now preparing a blog trying to share my own experience with fibromialgy (in a mexican style if I should say hehehe). I Know there is a lot of work to do to try people understand us. However, in my country (Mexico) is even harder because cultural and economic issues. That`s why, in my own experience, people really don`t know they are ill and get isolated because of the label of being so lazy, so stupid or so histeric.

    I will put a link to your site, but I also would like your permission to translate some of your articles on my blog, because I think many people need it (some of my friends doesn´t speak english at all)…it`s ok if you say no but if you say yes I promise never forget to include your name and a link to your site.

    I hope you´ll be ok and sorry for my english…is pretty much rusty but I know you will understand the message despite the grammar horrors.
    Lots of love for you and your precious 4 year old.

  • http://www.reflectionsbyrebekah.blogspot.com Bekah

    It has been nice reading the similarities and differences between these “30 Things” posts. I agree, the unknown is one of the hardest things to deal with. Here’s my list if you feel like visiting! http://reflectionsbyrebekah.blogspot.com/2011/09/invisible-illness-awareness-meme-30.html

  • Leila

    Thank you for sharing your story. I can relate to what you are saying. I have CFS/M.E. Rightnow, my family ‘doesn’t get it’ and the don’t care to (by family I mean my adult children…my parents have both been deceased for years). I have a church family who don’t ‘allow’ me to be ill and say things trying to be ‘supportive’ but not empathetic in the least. I can’t afford alll my supplements ever month so I go without them most months. I can’t afford food or gas in my car. I am on SSI but I have a special needs teenager to takecare of. I am not ‘sick/disabled’ enough for State help so I am stuck having to do all housework myself as the people I live with have decided that though I am paying $600/mo rent plus buying food that is ‘shared’ and foods I need for my health (which they end up eating as well), I still have ‘chores’ assigned to me. No one else does their chores and btwn us e have 3 dogs…my dog is old and needs to go to the vet, theirs are puppies and the female is pregnant. They wake up faithfully every morning at 5am and bark constantly with a high pitched bark so I am lucky to get 6 hours of slee. I spend my days being a ‘zombie’…always tired and irritable. No longer can I tae naps…If I do get a nap, it is generally 20-30 minutes and I am so tired when I wake up still. Stress is out of this world and the support I get is ‘Leila only YOU know your limits’…Though this is true, I have ALWAYS PUSHED myself beyond my limits and now my limits are minimal…ie: doing the dishes and one load of laundry zaps me or driving to the store with all the crazy people out there really takes my energy away. This is a glimpse into my life right now. I ran out of church crying yesterday because the pain was so bad (weather is already COLD) and I would tell people and all I got was ‘You’re in the right place (for healing)’…I don’t get healed and I am told ‘God won’t heal you unless you WANT to be healed’…Sorry everyone (on here…bydls) but I really need to have someone who ‘understands’ the hardships of this chronic illness. I was even told yesterday that I look ‘good’ and as if I am ‘getting plenty of sleep’…LOL! I was so incredibly drained/exhausted and in major pain it wasn’t funny. Again, thanks for letting me ‘vent’.

  • Laura

    I think you took all of this right out of my head and wrote it down. I too have Fibromyalgia, Sjogrens Syndrome, and Raynauds. So far I have been negative for Lupus, but I have a feeling I’m starting to show symptoms. I was lucky to be diagnosed with Sjogren’s by blood work and the symptoms of that and Fibro have been mild so far, with the excetion of a few flare-ups.

    Stay strong and stay positive! God wouldn’t give you what He didn’t think you could handle!

  • http://www.teamdanica.com Monica Snyder

    I just recently found your blog and linked to your spoon theory on my latest post on my blog about our journey with my almost four year old who has Chiari and some other issues. http://www.teamdanica.com I am so grateful for this place to come and know others understand. Blessings. Monica

  • Patty Mulcahy Jones

    Christine,
    I like you have multiple issues. The worst of which is Interstitial Cystitis. Another auto immune disorder. Lupus is one co-condition that IC patients often have. I would love to talk with you further about a possibility of working together. I have been a regional support group leader, advocate and national phone support volunteer for years. Thank you, Patty

  • MiniMorg

    you are truly an amazing
    ,inspirational lady. I’ve never blogged in my life but now that you mention it, that might not be such a bad idea as I love writing too and it would be good to work on, on bad days or inspired days. It certainly takes a long while to adjust to invisible illness. I had one person at work say to me “well you’re at work today so you must be doing ok” Your post says it all and is uplifting. I am sure you’re a great mother.

  • Autumn Brown

    Thank you for sharing your story. I have fibro, Osteoarthritis, severe degenerative discs in my lower back, tendinitis, tenesinivitus, too many bones in my feet that I constantly walk on, missing bones in my hands, pinched ulnar nerves, on blood thinners from a clotting disorder found by a PE in ’05 (30yrs old), the rest was diagnosed at 28 yrs old. I am 37 now. I suffer from migraines, take many medications and no one knows how much I hurt. Not even my fiance or 2 kids, 15 and 10. It is very hard to get going in the morning, and I never feel well rested, even with 12 hours sleep. I relate to a lot said here. Ty. :)