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.

©2024butyoudontlooksick.com
←  Older Comments
Newer Comments  →
  • Midge

    Hi Marla. I too have MS as well as several other chronic illnesses. I bless Christine every time I need to share what we go through. Her theory has helped me so many times since I first heard of it. I think I miss being able to play the piano with both hands the most. Well, next to driving of course. I’ve lived a lot longer than most of those who were diagnosed the same time I was. I guess God has a plan in store for me that I have not finished yet.
    Thank you so much, Christine for helping us. You are a real blessing to so many of us.

  • Catalyst Spark

    I hear ya on the “I know how you feel” comment. I have Crohn’s disease, scoliosis, sciatica, arthritis, many damaged joints, nerve damage, an extreme case of hypoglycimia, tachycardia and that’s just what’s diaognosed. I also have unexplained vertigo, fainting spells, never go a day without pain and a constant limp, randomly locking joints (hips are the worst and have downed my rear in a store) and, well, generally I just wear out and tired easy no matter if I’m doing physical things or even stuff at the computer can leave me near passing out. Then there’s the random tired spells leaving me unable to function which I don’t know what’s causing those sometimes I need someone to physically support me just to get out of bed.

    Yeeeah, when people tell me “I know how you feel” or the worst “It can’t be that bad” I normally look at them and say “If all of what I’m dealing with right this moment suddenly hit you, you wouldn’t be standing here right now.” seriously, just because I’m not some smaller, fragile looking person and look like I could take down most people doesn’t mean I can fight the inner enemy all by my self. It’s a totally different situation when it’s your own body turning against you after all, little harder to fight that since you can’t just kick your own body’s butt to make it stop hurting you.

  • Loved the way you expressed your feel in this article..

  • Tricia Louise

    I just started blogging about my life with autoimmune disease. Maybe you can relate: http://toughtriciabraveb.wordpress.com

  • Diane Cort Vaulner

    Thank you!

  • Rhonda Bennett

    I can say I truly know how you are feeling, Christine. I was diagnosed with Lupus in 2007. At the same time I was also diagnosed with RA, and Raynauds . I had also been previously diagnosed with Type 2 Diabetes, severe acute migraine headaches, and Asthma. There are days when I simply do not want, or can not, do anything. Days when to pain is too much. But I do get up and keep going because I have two beautiful children that need me and I need them. I take more medications than anyone I know. I do not currently have any health insurance so affording my meds is impossible. I have now also been diagnosed with a mental disorder called conversion disorder. (to much stress in my life). Since moving to Northern Michigan in early 2009 I have not been getting treatments for the lupus, due to the cost. The free clinic up here could not afford it. and now thanks to Obamacare, the free clinic can no longer operate. It was for people without health insurance and now everyone is supposed to have insurance. I can not afford to pay ins. premiums therefore I still have no ins. pending help from Medicaid. Most people say “you don’t look sick, your just faking it” but they really do not have a clue. My ex husband was one of the people that always said this to me.

  • Rhonda Bennett

    I have two forms of Lupus one that affects my joints and on that affects my skin. People are always asking me why my face and neck are so red. They look at the rashes I get and say “ew is that contangious?” My reply to this usually “only to me”. But they often do not get it when I say that.

  • Marla Eglowstein

    Oh, Christine, this is all so true for me too. I am at my ten-year anniversary with MS. Tons of ups and downs. I have just conquered two years of nearly continuous vertigo, during which I couldn’t ride or drive without feeling horrible. I’m so thrilled to feel better but there’s that nagging (and sometimes quite overwhelming) fear of what’s next. Your Spoon Theory has helped me explain what MS is like to many people, most of all my husband and kids–so that they have as good an understanding of what I go through without having MS themselves–something I wouldn’t wish on anyone. The inability to make plans, to take back my career as a physician, to dance, to be on my feet for more than a few minutes at a time–sounds so much like your journey. Thank you so much for illuminating the lives of all of us who share the chronic illness umbrella!

  • Jess

    Thank you. I’ve been feeling very tired, achy, stiff and feverish for most of this month… So my Lupus has decided to play hardball right when I’m TTC. I usually get flares that last for a week and then I’m in remission for 3-7 months, but lately it’s been like every day and I’m scared. It’s nice to sit here and read this, on my iPad, and nod my head in complete understanding. I don’t always feel like opening up my mouth to talk about it with people in my life because I cannot stand feeling weak or dependent. So, thank you again for sharing. It is very much appreciated. PS, I tired yoga today… It just made me more sore, my joints more fragile, and wiped out. It’s probably meant for when we are in remission only.

  • Leslie Ann Nieto

    Thank you Christine. You’re an inspiration not only to me but to all people suffering from this cruel disease. You have given me hope when I’ve often felt hopeless. Thank you for sharing your experiences.

  • Leslie Ann Nieto

    Anyone that makes comments regarding your appearance is obviously immature and unaware of anything and everything that might make a person look different than themselves. I know its hard to hear those things. When I hear someone make a comment like that this may sound funny but I pray for them. I pray that God will soften their hearts and open their eyes. I just feel like no one is better than the next person and if they are it’s not for me to judge. Stay strong my friend. May god bless you and you’re family.

  • Great Article, Will suggest to my friends about this article…Thanks

  • Alyson

    I have Lupus but mine isn’t ‘invisible’.

    My skin has been the most affected and even though my joints hurt and I get sick often I think what is the worst thing is when people look at me and make judgements or comments. “Is that a Tattoo?” “Ew look at her face” “Is that a burn” “Do you have AIDS?”

  • Car

    I feel the same, no one understands us!

  • adela

    I wish more people understood

  • I really felt a lot about you…. May god bless.

  • Briantd

    Thanks
    I cried while reading this… I often feel like a broken toy.
    I have a wonderful man in my life that trys so hard to unerstand , why my moods swing or simply feel ” off” gross or cant explain myself. Why the right side of my body gives out and i fall in public, i get angry and embarrased….Bless him for trying, i found this and sent it to him, he read every word and always does when i send him things.
    I had a particularly poor weekend .
    Thanks for having the words that i cant seem to find i side of my self to explain whats going on.
    He kept asking ” whats wrong?” I just say I dont know.
    thanks for having the words for me.
    Cheers, and peace be with you.

  • Leslie Ellis

    Hi Christine: When I first read the spoon theory I thought that could help me with a lot that I go through. I was diagnosed with Rheumatoid Arthritis at the age of 15. It was juvenile at the time but the RA factor was so high it never went away like they said it would. That was almost 40 years ago. I have gone through multiple joint replacements and reconstructions plus neck fusions. The discrimination I have gone through has been immense. The treatments they have today are helpful but nothing will give back what I have lost. I enjoy reading your articles and am thinking about doing a blog of my own. I am also trying to start my own non profit to help rescue homeless and abused pets. My own determination and will power plus my daughter is what has always helped me carry on. Thank you for helping people with disabilities and those close to them, have a better understanding.

  • Ruth Mayhew

    I cried when I read your spoon story. I have Lupus and felt so alone in it until I read your words. Thank you Christine. TheLord bless and keep you:)

  • Sapphy Faolán

    I can never thank you enough for everything you’ve done for me. Your Spoon Theory has helped me show people at least a little bit of how it is to be in pain constantly, i also agree with most of this list as well regarding myself. I got diagnosed with Borderline Personality Disorder AND Fibromyalgia in the same week back in 2012 (it felt like my world was crumbling around me for ages), after suffering with both since i was 12 years old, i also suffer badly with IBS and PCOS as well as anxiety disorder, all of which are invisible. I often get people saying that i look ‘happy and healthy’, or ‘it’s all in my head’ and it really hurts me that people can be so closed minded about stuff like this. Thank you for being such a good advocate for people like me and everyone else who relies on the spoon theory, and your other works to show people we are more than just a disease x

  • sherrylee

    Thank you, thank you. The one I love is living with Bipolar Disorder and I’m learning so much that breaks me to know. Your posts and the amazing, inspiring comments feed my heart and help me, help him. Please keep it up and you are all in my prayers! S

  • Reminds me of when I was first diagnosed with my Non-Hodgkin’s lymphoma. My then-husband was mad one day because he was at the doctor’s office being diagnosed with pneumonia–and the receptionist inquired after me and sent the message she hopes I get well soon but made no mention of his pneumonia.

    *blinkblink* I was more than willing to fix his jealousy by trading places.

  • “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” … YES. Thank you! This is one reason I hate work at the moment, I feel so incredibly guilty with every successive sick day I take but there are days where I simply just can’t make it and I wish they’d understand… but at the same time I know they don’t so I just have to do what’s right for me.

  • Frustrated

    Thank you. I always turn to you when I am feeling alone in my illnesses. I suffer from Lupus and my dr new thoughts are with RA crossover ?? I have Addison’s, raynauds, and celiacs Yesterday I woke up unable to walk. The pain is so severe and my legs just won’t go This evening I got the dreaded number 23. While asking for help down the stairs my fiancé explained to me that his sniffly nose and cough have him feeling equally as bad because he has flu aches. I was so angered because I feel flu aches everyday. I can not comprehend how walking with a walker today can be even compared to a runny nose.

  • Jennifer C

    Thank you for writing this! I live with depression every day, also invisible, a greatly misunderstood. It is good to feel that I am not alone living with something people don’t understand. Thank you for sharing about your invisible illness, I hope that it brings awareness to people that don’t know what it’s like, and hope to those that feel alone in their suffering.

  • Shari729

    Thanks for the Spoon Article… it was a great way to explain to family & friends what I couldn’t. I have MS & diabetes, so it’s very applicable!!

  • Sandra Beeman

    You have educated me very much about invisible illness. I’m sorry to say until now I was aware of the illnesses but not the dreadful effects they can have on people. All that suffer from invisible illnesses deserve all our respect and support.

  • thriftysoul

    facebook has a lot of fibro pages for you

  • thriftysoul

    excuse me?

  • Shawna L

    Recently a lady purchased a spoon ring from my shop TreasureGrotto on Etsy. She wrote to me saying, “I’m purchasing this ring as a reminder to take better care of myself – I have fibromyalgia. Those of us with “invisible” illnesses call ourselves spoonies, after the Spoon theory, which is a way of explaining that we only have so many spoons (energy) to get through a day. Thought you’d be interested, since you make such lovely spoon rings! You can read about the theory on butyoudontlooksick.com if you’re curious.”
    I’m so glad I checked in here to read about this illness that I’ve heard of, but knew little to nothing about. I will definitely look into ways of assisting with awareness and support of those who suffer. Blessings to you all! Shawna

  • Scarlett Mingione

    I’m your newest fan and wanted to thank you for all that you do. I’ve had Lyme for 29 years.

    My very traditional medical family has not supported me… even after my diagnosis of Lyme, Bartonella, and Anaplasmosis. I thought it would be my “aha!” moment when I could say “see?? I AM sick. Here it is on paper.” Sadly, that wasn’t the case, and it really depleted my spoon supply on a daily basis for a long, long time.

    I’m grateful for my husband and my 2 1/2 year old son, who can sometimes make spoons appear with his giggle. 😉 And I’m grateful for the support of other sufferers and for places to meet, like your site and FB page.

    Thank you again, and I sure hope you know what a big difference you are making. <3

  • PKMB

    I am new to this board and have recently been diagnosed with APS. Some of my friends think I’m just lazy or depressed. I have found your statement about getting sick and see which friends and family stay and which leave to be very, and painfully, true.

  • Kyra

    Hi Christine,
    I found a link to this through hypermobile.co.uk. Since the age of 13 I have battled with multiple health problems and a lengthy process of diagnosis…as many of us frustratingly do. I’m now nearly 24 and the most recent addition to my ‘medical conditions list’ (not sure what else to call it!) is joint hypermobility syndrome, I have other conditions which tie in with this also. I have had 10 year up hill battle trying to make people understand that just because I look normal most days and some days I can go do the food shop or meet up for a coffee, the majority of the time I’m not able to be that person that they think I am. I’d never heard about ‘Invisible Illness Week’ until now and I’m glad to have found it. Although I have sat here and sobbed through most of reading this, it’s through relief that I’m not alone in this and that I can connect with real people who truly understand via the internet if not in person. All I can say is thank you so much for being so incredibly brave and sharing your story, in doing so you’ve opened a door for me that would otherwise have gone unnoticed.
    Kyra x

  • Cookie

    Hi Christine…I just stumbled across this page after a brief mention of ‘spoonies’ on FB which led to a Google search. You said you couldn’t live without your microwave heating pads…I was addicted to mine then my big sister got me a Body Bean from Brookstone…so much better! Plug it in for 15 minutes and it’s heat lasts for 4 hours! Check them out if you get the chance!

  • Mia Bertilsson

    This goes straight to my heart. I don’t have Lupos, I have EDS. Live with my number of spoons every day and many things you wright here is just how I would say it.
    You are a strong person and an angel who can tell your important story so it reaches even me in Sweden. It is so important that all the invisible illnesses is advocated to the world so people now of our existens so we get the aceptance we deserv.
    Mia

  • Diana Booth

    OH…your number of pills you take shouldn’t be an issue for anyone, but you Christine! I take 6 scheduled AM pills and vitamins and 5 scheduled PM (but usually take 3-5 as need meds each night too). That doesn’t count the 5 as needed meds I take during the day as well! So I typically take 14 pills each day. On a BAD day…. up to 23 pills!!
    Diana

  • Douglas Geldien

    Christine, Thank You for your willingness to share your battles, struggles and your joys of life. Your Spoons description is the best I heard. I hope many other read your articles as it has givin me a visual way to understand what my dear wife, Karen has been trying to explain to our children and I for years. My darling wife of 30 years has been dealing with Fribo, IBS, Psoriatic Arthritis, and more since the the mid 90’s. Many Drs. were not familiar with Fibro in those days. It was very frustrating for her to know something was ailing her but we couldn’t get answers. One day, by chance at my Orthopedic appt., we were talking to my doc about Karens symptoms and he suspected she had Fibro. We had never heard of this disease from any other Drs. and specialist. At this point she had been dealing with her symptoms for several years and no answers. We read some limited info on the internet and demanded certain test and finally were told she definatly had the desease. I must say, over the years, It has been a struggle for us both in our own ways. She has been very descriptive of her aches, pains, depression, etc. However, it was very difficult to understand some days are worse than others and never is there a day where she doesn’t live in pain. To make things worse, she is a very busy person and has a difficult time knowing when to listen to her own body and slow down. Sometimes, she will use up today and tomorrow’s spoons before the day is over. We have raised 4 wonderful children and she very seldom relaxes because in her mind, there is always something to do that can’t wait for tomorrow. She is learning to limit the activities which cause her pain. However, as she tries to relax and use her spoons wisely, depression sets in knowing she can’t do the things she use to take for granted. I can’t help but feel her emotional pain as well and try to help where I can by taking on more household chores, massages, prayers, etc. I say to family members of invisible illnesses…PLEASE encourage your loved one, help where you can, and be mindful that a negative remark from your loved one doesn’t necessarily mean they are mad or frustrated at you. They just may be out of spoons for the day. This is when they need us the most. Be patient and love them like there is no tomorrow because the pain they feel… may make them feel like they don’t want to be here tomorrow.

    Christine,
    Please be encouraged that your words and works are appreciated by my family and many others as well. I feel you are doing a great service to give understanding and hope to the friends and family of loved ones with chronic invisible illnesses around the world. Thank you and GOD BLESS your day as He has something great in store for you.

  • proudmary

    We used to have advertisements on tv in australia about Lupus. up until a few years ago i think.
    I thought you would like to know that, they raised awareness, and they were even on in ‘prime time tv’ I remember seeing them all the time when I watched the simpsons as a child.
    They featured a girl and what i remember about them was that she was tired and had aching bones and stiffness. I know it isn’t much but I was only a child when they where on and I remember them.
    Thank you for your writing. 🙂 http://www.kidney.org/news/newsroom/newsitemArchive.cfm?id=261

  • Melissa Ann

    This is awesome. 🙂

  • Queen of LOVE

    13 year old daughter

  • Queen of LOVE

    Thank you for the inspiration! I’m blessed that I have a wonderful 13 year old who helps me with almost everything and offers a massage when I feel achy. GOD IS GREAT!

  • Janice O’Donald

    Thank you for writing about these problems as I have autoimmune issues also. However, I have had these problems my whole life although just diagnosed recently. I like how you have explained this with the spoon theory. I’ve often thought that I should look worse considering how badly I feel.

  • margie

    thank you for sharing. have an invisible illness to.

  • lori anderson

    Amen, sister.

  • Sandra Coley

    Hi, I was put onto this site via my sister in law. I have been poorly 4 20 years, and would love 2 chat with someone who understands fibro. I was first told I had M.S. then 7 other illnesses before Fibro. Anyone want 2 share there stories, how to cope with living with fibro

  • George

    Hon, you do write well and I can see your diseases. About meditation: learn transcendental meditation and have an expert teach it to you over time. It will ‘give you a vacation’ from the pain and allow more of the serentity into your life. Don’t give up the Hope and have Faith.

  • Judith Kneebone

    Heart warming to read, I have Lupus & sjorgrens sydrome and find it difficult to accept the limitations it have, i have yet to learn my limits (diagnosed 2 years ago) and like mnay do i make the mistake of trying to do too much and then suffer for it for several days later!!

  • December Baby

    Thank you for sharing. Headed to the Lupus Ctr in Pittsburgh today feeling a stronger & more optimistic after reading your writings here. Thank you for helping me today. I hope in playing it forward it comes full circle back to you. (Gentle understanding Hugs of many thanks) ♡

  • Elspeth

    Well done for your strength, positivity and grace. I have invisible illnesses too, solidarity.

  • Elín Rós

    love your blog! I was diagnosed with lupus 2003, when i was 13 years old! now i got good balance but he is always here. Your blog waked me up and got me thinking more about it, I’ve always tried to hide it, for me and everyone else.
    i’m lucky to live in iceland so the sun is not a problem, but the cold is. Keep it up!

←  Older Comments
Newer Comments  →