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.

©2022butyoudontlooksick.com
  • http://jewelryatalifeuncommon.blogspot.com/
    I took courage and posted too.

  • Thank you for your open heart. I am just now trying to open my heart up.

  • Dana s.

    Thank you for ur words and time. My diagonis went between lupus and fibro for yrs at the beginning we all settled with fibro and all of the body destroying issues that come with and this has literally taken everything from me. I have no income and no way to get one now. Thank you to my daughter for living with me.I have no one to talk to about my painthey r tired…so I bury it. I got myself off pain meds because I was so afraid of addiction. Sometimes the pain is so has I can’t even talk just breathe…but I don’t tell anyone..I just breathe…but I am proud to announced that I push on that I am not weak because I am broken that really I am stronger than I ever was to have to deal with this pain just taking care of basic needs that is a big step. I/ we are very very stong people. 🙂 wow that felt awesome thank you for letting me rant and not even getting mad lol

  • sarah

    Thank u. Ur words have given me strength and wisdom to live with my own imvisable illness 🙂

  • Darla Simcox Decker

    loved the article..I have many problems but the pain has gotten so bad all over that I don’t have a life anymore..sometimes when I can’t go to family functions, I think they get mad and think I am lieing …I wish they could spend a few days with me and see how my life has become…I have not been dx with lupus yet. 3 yrs ago the ana was neg. but as soon as I get insurance I am going back and getting tested again. almost every bone in my body hurts now. but I also have avacular necrosis in my wrist and xray on my spine shows diminished blood flow and that scares me it has it too. It hurts just like my wrist does. many other problems are accumulating . long list of things I have been dx with…you would think the doctor would try and figure it out. on my records it shows an unknown arthritis. why not help me. but instead they just give up.

  • Green Solution Collective

    I admire your courage and strength. I can’t even imagine how much pain you are in everyday. Thank you for writing this article. It gave me a better understanding of you and other lupus patients. Oh yeah and there is an episode in House that finally they have a case of lupus.

  • loobylou

    I was diagnosed with FMS seven years ago although it was a relief to finally have a diagnosis myself and my wife and kids didn’t realise just how much life would change. I now walk in very short bursts with a stick or use a wheelchair because the pain in my legs and back is constantly too painful to stand. I suffer from severe water retention with it so have heavy “elephant” legs lol. I have carers in now to help me in the mornings and evenings with washing and dressing. My wife is a star and my kids have a great understanding of my condition and all help. It was so hard to give up my independence and it reduces me to tears. I have almost constant memory problems so avoid talking to people outside of my family incase i forget what i was saying or forget what the name of things are and panic if im put in that situation, i shake and cry, its really distressing.

  • Claire

    Hi, I wanted to share what helped me cope with my symptoms
    of fibromyalgia.

    1) a few teaspoons a day of raw sesame, pumpkin and
    sunflower seeds (organic- so no pesticides are ingested). The seeds took away the sharp shooting pains
    that were getting out of control. Every
    few minutes all over my body. The pains
    for the most part stopped as long as I was taking the seeds.

    2) juniper berries in capsule form also helps the symptoms
    be suppressed.

    3) After dealing with the pains for many years I came upon a
    final solution for me by accident: One
    of my daughter’s refused to finish off her prescription of penicillin. It was sitting around for several weeks. So I decided to see if the penicillin would
    help me at all. It did! I hardly ever get any pain from the
    fibromyalgia symptoms any more. It’s
    been about 4 years now.

    I wanted to share my story to help others. Please forward.

    God Bless, Claire

  • mrsgreenmom2

    I can relate to all of these, but #19 and #20 hit close to home. #20 because I would LOVE to take photography. I’ve got 2 of the biggest picture hams I have ever seen that get all excited when either the cellphone camera or the good camera comes out. My kids make wonderful subjects, the hubby not so much, LOLZ!
    And in relation to #19, my independence has been waaaay hard to relinquish. My daddy always told me I should become a lawyer because I could argue the fuzz off a peach just because I was so determined that the peach would just give up. I hate having to ask for help for anything, have always been hard headed about doing it myself. I used to be anal about me being the only one to do laundry for years. It wasn’t because my husband couldn’t do it but I felt that he shouldn’t have to. I hqve finally relinquished that chore to anyone who wants to do it.
    #22 hits home too. I’ve lost friends and family and have gained others. One of the worst things a family member has done to me may seem trivial, but it made me realize how little he knows me. I’m a tattoo lover and found an awesome “spoon” tattoo and posted it to my fb page. A lot of ppl got it and thought it was awesome so I was super happy. Then my baby brother asks ” what the heck is that supposed to be?” That hit hard and hurt bad- still hurts to this day. I responded with “obviously you haven’t been paying attention for the last 10 years of my life. And you haven’t read that paper I gave you about spoons” I was disgusted with him. A lot of my family has just chosen to ignore the fact that I have fibromyalgia amongst other things. I recently had to remove what I shall call a “toxic friend” from my life. She has lupus and other issues. We were able to relate on the invisible illnesses front and understood it when others without can’t. The problem was that she seemed to WANT to STAY sick and not try to get better or have a better life. Whenever I would go to her house we always stayed in her bedroom. She has a beautiful 5 bedroom 2 bath house (paid for by Idaho housing of course) that she only used 2 rooms of- the bathroom and her room. She rarely wanted to go anywhere but on the few occasions I DID get her outta the house, I realized she was a thief. I’m a member of Melaleuca and am lucky to have an actual store near me. I took her with me and she stole a tube of zit cream. She didn’t take into consideration that they have MY credit card on file and could’ve charged me for it. Not to mention just being with her when she stole stuff could get ME charged with petty theft, even though I didn’t steal. But she didn’t care. I also got thinking that she was trying to keep me at her level of living-or what she called living. She, her husband-who used to be my husband’s best friend- and 4 children(1 almost 19) live off of Idaho housing, Medicaid, food stamps, and her 14 year old’s SSI. Her husband hasn’t worked in almost 2 years cause her mom used to live with them and paid for everything with HER SSI and retirement. I couldn’t stand seeing her live like that. The biggest reason I finally got rid of her is because of the phone calls I would get every month around the 14th. .. med refill day. There was always an excuse- the best was that she was filling her med box and the dog knocked a cup of water over onto her pills, thus ruining them-so many that I’ve lost count, that she needed to “borrow” a few pills. She was an addict plain and simple. She used her gastroparesis ask an excuse-and claimed the gastro and pain specialist approved it- to crush and snort her pain pills. She was so into it at one point she had to buy a new crusher every week! Well, to sum up my whole story since I’m rambling, we ended up having to move a few months ago. We had been trying to cut her out and wanted to change our phone numbers for awhile but she would come over if I didn’t answer my phone. So when we moved, we made absolute sure that she had no clue where we moved to. And since she didn’t know where we lived it was safe to change our phone numbers. I was online and had just changed the hubby’s and was getting ready to hit the confirm button on mine when she called me-so ironic. I let it go to vm, saw the vm indicator light up and listened to her blah blah blah and that she’d call me later. I then hit confirm. Freedom at last! Saw her in the gas station a bit ago and was actually trying to find a place to hide! When she asked where we moved to I gave her a vague location far from us. I made sure she didn’t follow us home too.
    The point I was trying to make with my long winded story-sorry readers- was that having ppl stay or gaining new friends isn’t always a great thing. Having her as a “spoonie” was NOT in my best interest. The freedom I’ve had since getting rid of her has been great, most days. My friend circle wasn’t very big to begin with and that dropped 2 in one swoop. So I get a bit lonely now, but I wouldn’t go back. Our family has achieved so much since getting away from her toxicity- ie no more welfare other than SSI for my son, SSD for me and health insurance- that I’m happy. Hubby has a good paying job and we don’t have to rely on the system. I’m gonna stop here cause I could go on all night.

  • Christy Creech

    I was diagnosed with SLE Lupus, Rheumatoid Arthritis, Fibromyalgia, and Sjogren’s in march of 2010… I am 40 years old today. It has been the longest and most trying 3 years of my life. Reading your post has given me so much to look forward to! I feel like I am completely alone in the world with this illness. It has taken me bring admitted to the hospital, thinking I had blood clots in my lungs, me having to have a MRI f the brain due to cognitive issues etc for my family to even barely believe I’m sick. No one knows about lupus and even when I can’t get out of bed or wake up for days at a time I have had very little response from my so called loved ones. My husband nd I are going through a divorce currently. He still doesn’t think I’m sick at all. He thinks I’m lazy!!!! I worked 60-75 hours a week before diagnosed I loved my job, my career, my life as busy as it was I loved it. I worked or doctors and they didn’t even admit I had my illnesses or care after 6 years of giving them everything above my own life and family many times! I have learned to deal with things as much as I can. I am in the middle of my disability claim and had a hearing on may 21st and still am waiting to hear from them. Other people get told the day of their hearing they were approved and then get their back pay within weeks after! I haven’t worked since July of 2010 and am going through a divorce which my husband currently is only paying me 700.00 to raise our son and live off of. We have to live with my mom and she was recently diagnosed with throat cancer and just went through 6 weeks of radiation and chemo… My life has been actual hell since march of this year. My husband was arrested for domestic violence but of course I’m a liar, actually he has accused me of being a drug addict and an unfit mother and is suing me for full custody of our son! I’m not a liar and if he gets full custody of our son I will not be able to breath another breath… I still have a positive attitude and I do not let my illnesses be my identity. I suffer everyday one way or the other as you know. But I have put my life in God’s hands and I trust in him and his will for my life. I am so glad infound your website and will be readi your blogs daily now. I finally have others that truly understand what I go through. Thank you for your work with our illnesses… You are amazing

    [email protected]

  • LC
  • Adrienne

    Thank you very much for sharing your spoon story with the public. It really brought light to my husband’s illness. I am a lot like your friend I have been through it all with my husband, but of course I am not the one who is sick so I will never truly understand. I would love if you could add Valley Fever to your list of invisible diseases. This is what my husband and many others suffer from. I want more people to understand what we as a group goes through. I encourage anyone with VF to join our FB group. Valley Fever Support Group. We are a group that helps people deal with their spoons. No one should hold there spoons alone. Thanks again your an awesome person.

  • Heather J Frederick

    Thank you for this as a patient with chronic illness (severe migraines) and a doctor (no longer able to practice).

  • JoJo

    Great piece, Christine! So much of what you say is my story as well. I ALWAYS use the tin man description when explaining to friends about what it fees like waking up every morning. I love that is your analogy as well. I love the spoon theory & it has been a supplement for mein explaining to family, friends & even newly diagnosed patients what lupus is. Thank you for your wonderful website. I too try to be as positive as possible & help patients see that life isn’t over w/ lupus. It is just different. Having you & your site has been a positive impact on my own support system & I will continue to share you with others. 🙂 THANK YOU!!

  • Christle Waugh

    I cannot begin to.know how lupus feels. That is not one of the many labels I’ve been given. I now have on the.list..IBS,chronic fatigue, osteoporosis, fibro, osteoarthritis, OCD, bipolar, and the lovely one just added…DID. (dissociative identity disorder). I hate the.labels because they ARE NOT me. I may fight these things, but they do not define me. I fight each daily and nightly. But since no one seems to get it fully,I don’t bother trying to explain. Now the Drs are trying to dig deeper..I guess for another label to explain even more BS symptoms. I cannot bother to talk to anyone on my Fb friend list..I seem whiny or lazy,or just irritate them. I was so glad I found this site. Although our health issues are not always the same..we all relate to the crap that goes along with having a disability that no one can see with their eyes.. Even my father says “suck it up, get off ur but and get a job.” I so wish I could do just that..but in his mind..I’m just lazy and want attention. All I really want is to have more good days so I can accomplish at least SOMETHING worthwhile. Thank you to anyone who bothered to read all of this. And thank u to Christine for showing me there are those out there who get it.

  • Chris hills

    dove

    My name is dove i want to use this opportunity to thank Dr.okosovo for helping me get my lover back after he left me few months ago. i have sent friends and my brothers to beg him for me but he refused that it is all over between both of us but when i met this Dr. okosovo he told me to relaxed that every thing will be fine and really after just a week i got my man back. so thank you so much DR okosovo. here is the email Dr. okosovo ([email protected])

  • Karen

    I stumbled across your blog when i was doing research on Lupus. I loved the spoon story! The doctors are just starting to work through whats wrong with me. Had mono back in September, since then, still sick. I’ve had 2 positive ANA tests, second one the titer had come down, doctor today said we would do test again in 3 months. Chronic fatigue, tingling in hands, have always had migraines and some pretty bad lower back pain. Going to have an MRI on Wednesday for the back pain. My Rhumetologist and I talked about fibro today and she did diagnose me as having it. She also diagnosed me with Raynauds on my first visit. I’ve seen her twice and liked her explanations today. I thought I had Fibro last year when I was told it was Mono. My general practitioner thinks I have Lupus. So, I guess I’m kind of in limbo until I get tested again in 3 months. She did put me on Cymbalta today, so I will try that next. Loved the comment about Lupus never coming to the party alone! He has friends!

  • Susan

    Christine, I think the hardest thing about the invisibility is that you find it necessary to explain sometimes. About 73 years ago I had Polio. I had an upstart family doctor who had read of Sister Kenny years before her work was accepted in the US. She took over when the conventional treatment of immobilization didn’t help. My folks never made a big deal of what I couldn’t do…just about what I could do. I ended up being a competitive swimmer and wannabe dancer! Couldn’t run. No one understood… and many thought I was making excuse or was lazy. I had been taught not to blame polio by my folks. Hard stuff, when you actually do have a disability, but no braces or wheelchair to go with it.

    But I am so thankful for forward looking people in my life. Now I am experiencing Post Polio Syndrome, I have learned. Again, it looks like complaining, excuses or laziness. I have to sleep a lot. But I attack my lifelong art passion between sleeping periods. At 75 I have a lot to be grateful for.

    Best part of your sharing was the reminder that one has to learn to say “no”. Budgeting what you have in strength and stamina, and being choosy about how you “spend” it. is key.

    God bless you for your share. Susan

  • Rhonda S. Mong Costa

    I would like to thank you for your passion to help others. I have just recently myself been diagnosed with Lupus, Sjogrens, Raynauds,Osteoarthritis, and it looks like Lupus Nephritis. After years of off and on signs, and symptoms, it finally makes sense. Your spoons theory is most awesome at explaining to someone who
    has no idea.
    May God bless you, and everyone out there struggling.

  • Jonathan Weavers

    Hey –

    Your last post [30 Things About My Invisible Illness You May Not Know] was freaking awesome. I have gone ahead and added your stuff to my Feedly account. Please keep me updated if you post anywhere else.

    Keep rocking –

    Jon

  • ms maxiena marris

    Hi ive got the same like you imat present in deep distress has the invusable illness is very disabling n its not nice when family and services and life in general is dam hard. Pain n cramps constant tiredness n lack of energy n wat all of us have to do is very hard we cant do everything figranted im like you are very interested in hobbys, im very privet person n suffed all my life with anxiety even frm the age of nine wen i lost my nana i lost alot miss her so much she also suffered with pain n life wasnt easy wen we have social phobias. Ive never been one to speack up for myself til i had this condition controling my life everyday is a gamble. There is no set patten n im goung through wat u r sayin . I sobb n cry in pain n do al the right things like vitamuns n the medication which takes agers to put in a caset box for the week ive to do them wen im on a good day which is the day i try n catch up on housework. Family dont understand how it is n say calmdown? I cant make anyone understand me jst my gp n other healthprofesionals who are involved with my care. Its hardto book days out or away for a wkend when you are in cronic pain n cant eat or go to the toilet properly has ibs n stress levels are high. Thank you for writing this ive been writing dayley notes a diary of how every situation n lack of undetstanding from people n services dont belive how it all is quality of life is limited i cant just get up n rush like i used tobe able to n id live to spe.d ti,e on holiday with friends which are posertive lije me yet we have it hard n noone realy wants the burden of me n this illness is awfull i nearly died ladt year becoz of a big flair up wen a doctor stoped my medication after been on it since 2009 after being in icu on life surport uve never been rite sunce n whats happed since is bad luck mostly because people n services arnt helping has good has they shud.

  • Rhonda

    Found your blog on fb and followed. I also write. I write in my journal every day. Not for others to read but to help myself. And writing does work. Bless You!

  • Karon Bending

    It’s always nice to know that there are people like you around. I admire that you put so much effort into keeping us all sane!

  • Grace Wojo

    I didn’t know that a web sight like this exists. Thank you for sharing and starting the web sight. I have Severe Sjogrens Syndrome, IC, Crest Syndrome, Fibromyalgia, and several more. No doctors can decide if I have MS or not… I like your spoons each day is a challenge and its hard to have a disease that no one sees. Im so grateful for your story and websight I cant properly share my feelings right now, just Thank you for me being able to know im not alone this evening.
    Grace

  • David Rye

    So similar. I have Fibrosing Mediastinitis. About 500 people in the US have ever had this disease and only about 45 have had my particular type. Even most doctors have never heard of it. No treatment, no cure, progressive. But unless I’m having a flare-up, you would never know. So many of your answers are the same as mine. Thanks so much for the site.

  • margie

    thank you for sharing,glad I am not alone in the pain department,have had fibro since2001.

  • liz aitken

    I have fybro pain, ruptured discs, have had breast cancer and have just been diagnosed with a stroke….and i am ONLY 51……pain has taken over my world, i am now off work sick and will probably lose my job …but….omg it heartens me to read about other people feeling what I feel, that i am not going off my head and that my complete lack of energy after the smallest tasks is quite normal….under these health circumstances….keep blogging ppl you are keeping me sane.xx

  • Lori Van Emmerik

    I too have systemic Lupus. Along with many of the other fun friends it brings to the table, I have good days and bad days; I’m just happy when the good out number the bad! Thank you so much for sharing so eloquently the life of a lupus/chronic illness sufferer! Someday maybe in our lifetime, they will find the cause and cure for this mysterious illness! 🙂 God bless you!

  • MGBRN

    Number 19 is my hardest hurdle right now. The predisone side effects make me even more emotional and forgetful. Number 15 hits home with me also. I was in denial when dx 12/12 polymylagia Rehumatica . Just told myself I would beat this and do everything I was told to do, etc…. Then as the prednisone decreased I wasn’t aware I could flare….. Big time flare in April 2013. Very depressed that I had to start all over with high dose prednisone 60mg and I never left my house for 2 weeks. Lost all the strength, flexibility and balance I worked so hard to obtain through PT. Very depressed. Now that I’m in my 7month with PMR I will be seeing a rehumatologist next week. We are taking this decrease in P slower, currently at 17.5mg, I started symptons at 15 mg and when he decreased me to 10 is when I flared. That is my greatest fear— to flare again. Failure to me and continued loss of independence. Latest problem is I’ve had blurred Vision for months, exam Tues revealed cataracts from P. Ordered new lenses for 2 pr of my frames but will have to put up with blurred vision another 2 wks. Sorry for long post. Once you get started venting— it’s like vomiting— you don’t feel better till you get it all out. Love your spoon story!

  • Sharon Lloyd George

    Thank you for sharing your life and experiences in dealing with your invisible illnesses.

    This is a great way to help not only those experiencing these illnesses but also educate people that have to interact and work with us on a daily basis. Have you considered adding Trigeminal Neuralgia to your list of invisible illnesses. This illness can have episodic flareups with very piercing,debilitating pain in the face: jaw, teeth, eye, ear.

  • JodiLive

    Thank you so very much for sharing your life! A friend of my sent your blog to me and after reading your “30 things” I’m like WoW! I’m now trying to respond through my tears! You said so many things that I can relate to (#4,5,9,12,15,16,22) to name a few! I never thought that being diagnosed with liver cancer would reshape my life in so many ways! My diagnosis has fueled me to share my life and inspire others to LIVE!

  • Imbue Pain Relief Patch

    We see cases of rheumatoid arthritis and osteoporosis very frequently. There are a number of alternative treatments available. A couple supplements to try include: Avocado Soy Unsaponifiables, Cetyl Myristoleate, Willow Bark Extract and Other Salicylate Sources.

  • JayChong

    Diagnosed patients shouldn’t have to choose between career and health. We have laws designed to protect patients who are suffering. http://www.legalmatch.com/law-library/article/ada-accommodation-lawyers.html

  • Dionis

    Hi, I can relate to every thing you were saying. I’ve been dealing with pain since I was 5yrs old. They fisrt told my mother they didn’t know what was wrong with me. I use to have pain in my hands & wrist all the time. Just as sudden as it would start it would stop, when I was about 16 had a real bad episode I couldn’t raise my arms nobody could tell us anything. Then my back went out couldn’t walk, needed help for everything. As time went on I was told I have Lupus, Osteoarthritis, Raynaud’s & osteoporosis that was in my early 20’s..I’m 42 now and just found out I have fibromyalgia. So I really understand.

  • OnMyTerms

    I am a new and still unaccepting of the diagnosis patient (I guess). I spent the majority of my life in the pharmaceuticals business and I have learned to be a disease and provider agnostic. What I decided is to handle this on my terms and live as normal a life as I can. My main early symptoms are edema (lots in my feet) and fatigue. I’ve had a kidney biopsy and have early kidney disease. Let’s see what develops; “it” will get a tough fight from me.

  • Chronic Action

    I read it. Great job. So glad I found your blog!

  • Tanja

    This is great, thanks for sharing. I was diagnosed with Lupus 1992 and then it morphed into rheumatoid arthritis…it can be hard to live with an invisible illness at times but attitude (like yours) is the key! Keep up the great blog posts

  • Veronica

    I was diagnosed in 2007; but have had symptoms since I was 14 (1983). Finally having a known answer is good; but bad at the same time. Knowing doesn’t change it. Having a place to read about others who suffer the same is comforting. I know I’m not alone. Thanks for being with us.

  • Thank you so much for your work you do for all of us. I have a question. My mother had Raynaud’s, Shograns Syndrome , Scleroderma, not sure the spelling but I saw her suffer most of her adult life with these issues. Never having tears, hands swollen and purple, no saliva..etc. She passed away from Multiple Systems Atrophy. I understand all are autoimmune diseases. I was diagnosed with Fibro a few years back. Things have progressively gotten worse and still trying to figure out how to function as my entire life has been turned upside down. Do you think that Fibro was caused from genetics?

  • Linda Weaver

    Dear Christine,

    You need to know what a huge difference you have made in my life. I posted The Spoon Theory of Lupus on my Facebook page, and also gave a copy to the 5 most important people in my life. My husband, the person I thought understood me the most, just stared, open-mouthed. He said he’d seen everything you described in the Theory in me….and didn’t realize how his sometimes negative reaction my “minimal spoon says” hurt me. I can’t thank you enough for that insight.

  • Jack

    I know Lupus is very painful especially when you go out under the sun – it alone is very frustrating. Arrrghh! I can understand what you’re going through. Stay strong and full of hope. You are an inspiration especially to others who are suffering the same. Thanks for spreading the words about these diseases and for sharing your story. It helps a lot.

  • Paula

    I found your site thru sjogrens World. To say I am grateful to you is an understatement. I, too, am strong willed and very independent.
    Having sjogrens , vasculitis, scleroderma and hemi facial spasms has greatly decreased what I can accomplish in any given day. I just don’t know what to expect when I wake up each morning. I have great plans, end up doing very little and am totally frustrated and defeated by the end of the day.
    Anyway we all know the drill and we all muster up the courage to move along. After all, for the most part we don’t look sick, so what are we complaining about?!?! I actually feel silly when I say I don’t feel well, I’m too tired, my joints ache….so, I rarely even talk about it to anyone. People really do not understand, sadly. I’m definitely going to use the Spoon Theory, ifi ever try to educate someone .
    Anyway, I am very thankful for your blog. I feel so much better to know I am not alone. Thank you.

  • Prothbart

    Just finished reading 30 Things About My Invisible Illness You May Not Know. Wow! Thank you Christine for this wonderfully written article! You covered all the important points, stating them simply and clearly. Both my mother and I suffer from Fibromyalgia.
    Even after more than 25 years, it can still be hard for family and friends to understand how difficult it can be to live with. By sharing your pain, you have helped lessen mine.
    I am grateful.

  • Heather__cook

    Thank god someone gets it. I’m suffering with diffuse systemic scleroderma and it’s like running an uphill battle on ice.

  • Thanks for sharing this information. I work with so many patients with husbands and family don’t believe how they could look so good and feel so bad. It wasn’t until I came across Cytokine Induced Sickness Behavior while studying the results of lab tests that a Eureka moment occurred. The cause of the invisible illness became visible. The symptoms were the same but the lab results were unique to that individual. Each requiring a specific program to fit their needs. Anything can set off a cytokine storm. I wrote a blog on cytokine storms. http://wp.me/p2NFGJ-5
    Dave

  • Kuddos to you and your blog from a fellow invisible disease (multiple) sufferrer. We all need to stick together and shout from the rooftops! We need more adversaries in this fight to make doctors realize that we are sufferring and we demand that they learn and treat fibro. and we will not sit back and suffer in silence. The more we write about our experiences and the things we find helpful, the more like us we can help. Keep up the good work!! Check out my fibro. site also!!!Valerie (www.fibromyalgiacareblog.com)

  • Beth

    Peace and happiness to you. I have MS and can relate to everything you say. I think one of the most hurtful things I experience are the comments and looks I get when I park in the handicap spot – as often as I don’t, the times I do I hear whispers and comments – “shame on her, she doesn’t look handicap”. If only they knew what it took for me to even get ready to go to the store let alone walk in, shop and wLk out with the horrific pain. Another thing, the looks from the clerks in the pharmacy, I am not a drug addict. Yes, I take pain meds, without my meds I don’t believe I would be here today. Pain wears on your body and your mind. Medication has been a God send to me, so to be judged and made to feel guilty for taking it is wrong. Anyway, great website, I truly appreciate you sharing your feelings, it helped me!

  • I am glad to see/read all your posts. Very inspiring as well as educational. Didn’t know much about this condition but I can find myself relating as a gout sufferer since my 20s. I like staying active and so I try to look fit but deep in my joints I know something is waiting to attack.

  • Jode

    Sweet Christine: My professor at college just sent me this link: at present, I am about to take a final exam for her class. I am a 47 year old woman, who was diagnosed 3 years ago with Systemic Lupus and worst even Systemic Scleroderma (even less is known about it). At the time of my diagnosis, I had received my AAS as an RT a year earlier. I had accomplished my goal as a single mother of two, got that degree and found my dream job. I met who I thought was my future husband and was on top of the world. I can not type the whole story, but let me just say, he could not handle what I was going through, I lost my job, him, and my whole world fell apart. I fell into a deep dark depression. I went for millions of tests for them to figure out why I was so swollen, had a low grade fever, one of them put me in the hospital for 10 days with an infected colon (a simple colonscopy) and I woke up unable to breathe and in Congestive Heart Failure. The worst news, was finding out that I was unable to receive disability, as I had not worked during my 12 year marriage and did not have five years of steady work? I was devastated at the time, fought like hell to get it, telling SS that School for three years and two years of steady work should count. However, I am glad that this occurred, as I am now on a mission to achieve my bachelor’s and then Master’s in psychology. I, unlike you and many other’s have absolutely nobody that stands behind me and helps. I am all alone. My daughter is just 12 now and my son, is not speaking with me. My father is dead, my brothers do not care, my mother worst of all, has no capacity to help anyone else unless it benefits her. I have a few friends, but they do not truly understand. I had zero friends when this all came about, as I was immersed in my man, his three kids, my two kids, school. I am desperately trying to stay focused all the time. I feel heartbroken, yet to others, they see me as strong and lively. My alimony and child support ends in 6 years, my goal: get the degree (masters) in 5 years and find a job within the year…be independent and depend on myself! As far as symptoms, I take at present 11 pills everyday, one of them is so toxic, kind of like Chemotherapy in a bottle, every part of me aches, especially my hands which are needed desperately to type. I am having a very hard day mentally today. God put my preofessor in my life, as she, unbeleivably has two immune system diseases and somehow, although our class in online, we ended up chatting about it. I would very much like to become involved in any small or big way that I can to help. Please do contact me if you can. I am going into the field of psychology with the intention of helping others who are afflicted with such diseases as ours and the depression and anxiety that comes with them. Deep regards, Jodie

  • Paula LaRue

    This is very touching, I don’t have anything like you do, I know a lot of people from talking to them on FB have a lot of problems and as with me you would never know something was wrong. I live daily with a lot of pain. Arthritis, osteoporosis, surgeries that made other parts of my body in worse shape than what was done. But I feel blessed that I don’t have more. They always say that God will not give you more than you can handle, and I believe this, but some times I truly wonder. Thank you for sharing with me this wonderful blog. May God bless you and your work.