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
  • drmom5

    I tried to contact you through Discus but it’s not cooperating. Find me on Facebook. I think I can help in many ways.

  • drmom5

    Tell them it’s kinda’ like Lupus. They’ll ‘get’ that. I once had a divorce court judge ask if my disease was fatal. I asked her, “Do you consider lupus fatal? It’s kinda’ like that.”

  • Laura Hinojosa

    You are blessed. Mine tries, sometimes, but hasn’t a clue. I’m very envious but glad to know miracles happen. God Speed.

  • Laura Hinojosa

    Thank you. My invisible illnesses have me on the ropes right now, from yet another surgery that is likely to do nothing but scare airport security. I’m to tired to fight right now. My spirit is nowhere to be found at the moment. Thanks for helping me fight without getting out of bed. My babies, 3 and 5,already, will be up and running soon so thanks for fighting by my side.

  • Cheryl

    I am amazed how you put into words exactly how I feel. I’m sure many of us do. This is so well written. Thank you

  • Lisa

    You take my thoughts and put them into words! This is exactly my feelings. A lot of people also think chronic disease is “laziness” in disguise. I have given up on explaining and just smile like I’m crazy. Thank you Christine for all your writings. I just found you through a MS Website. Your articles made my morning.
    thank you.

  • BigBang05

    I love this! It inspires me to write out the answers to the questions to really reflect on the challenges, successes, and the failures. I don’t like to use the word failures per se as I consider them learning experiences.

  • Vanessa Dee Grantham

    Hi Lisa, I will need to speak with my asthma doctor about it – I’m not remembering, been too long. If you’ll give me some time I will get you the names of the blood draws he did – I do recollect that several tubes were drawn (5-6), I was given a flu shot in one arm and a pneumonia shot in my other arm – then given directions to return in one week and they would draw another set of bloodwork to be tested – looking for antibody reactions. Feel free to recontact me, should you not hear from me in a bit. Later, Dee

  • Lisa Kay Morton

    Hi! Could u please tell me what blood work was done to diagnose Hypersensitivity ??? Thanks, Lisa

  • Lillybelle

    Christine you are such an inspiration keep up the fight and I will include you in my prayer circle. I am new to the site and am deeply touched by the comments from other viewers . i hope the following tips that help me will be of use to you all!! My Fibromyalgia / chronic fatigue started in 1987 after severe flu and I went from being a healthy 28 year old mum of two little ones to an old age pensioner in just 3 days! It feels like I have skipped middle age altogether. After all this time I am yet to find medication effective but keep going with chiropractic treatment for the lower back and general spinal pain, and physiotherapy for more of the muscular spasms . I live for my visits to the local heated pool where I slowly walk and cycle (under the water) and gentle stretches recommended by the physic. Using the sauna gives joints and muscles some soothing relief as does the spa where I can focus all the problem areas on the jets for a few minutes at a time. Some recommend Magnesium tablets for muscle pain, and naturopaths can be of help in some cases. The Spoon philosophy is so relevant and I follow the principle I also use Lectric Soda crystals in the bath or Epsom Salts they help muscles to ease a little. If you have health problems such as heart/blood pressure/dizziness etc. check with your own doctors before going to saunas or spas !!! Our local hospital has a Pain Management clinic on a 6 week cycle and it includes Myalgia patients (Hooray for recognition!! Their tips include occupational physio changes to daily tasks such as how you stand, walk and work.There are physic classes to try out new stretches under supervision and relaxation classes and hydro therapy classes. Check with your local hospitals for similar programmes well worth the effort to get there! One day at a time everyone keep positive as much as you can xx

  • http://www.marykay.com/jeniwhite Jennifer White

    This is a great article. It’s also good for those of us with sucky illnesses to use to focus. what a great set of questions to answer for yourself and give yourself an anchor to hold on to when the depression tries to spiral out of our control. I have MS and a host of other friends it invited to the party.

  • marivan

    Thank you, Christine for this site. I have Mixed Connective Tissue Disease, along with Crest Syndrome and scoliosis of the spine, affecting my entire half of my body. I am 63 and had seen a doctor for 13 years, who sent me to other doctors, (13 in total, including her). But, suddenly, she disappeared. I went to a female doctor, another one, who is an internist. She was concerned because I was on 300 mgs/day of morphine. She was afraid my body was too used to it, to work. So, she put me on Butrans Patch, but my insurance wouldn’t cover for any more. Then, she put me on buprenorphine, which also was better for me. But, she suddenly disappeared too. The clinic I went to, didn’t bother to call me, the day of the appointment, to tell me she was gone. Plus, when I went to fill the second of three refills, only having two left, I found out from the pharmacy, they stopped my prescription, again with no one telling me. So, I talked to the head of the clinic, a doctor who once gave me a script for morphine, when my primary was sick, one time. She said she was putting me back on morphine, only to wean me off of it, again. I was off the morphine for four months, then, but here she is, putting me back on it. Then she sent me to a jerk doctor. This man, only saw me for less than 5 minutes and when he first saw me, he looked at me as if I was a drug addict! He claimed he read my history, saying I didn’t have any positive ANA tests. But, if he had, he would have seen I had them off and on. Any doctor written web site, like WebMD or the Mayo Clinic’s site will read how the blood tests aren’t necessary always positive. This makes it hard to diagnosed the diseases I have and the others, other patients have.

    Not only that, he didn’t see that I haven’t had a blood test in two years! He didn’t examine me, order any tests, but decided I need to get off the morphine, too. He, also gave me another script, which I am not filling, for I still have plenty of morphine from the Head Doctor’s script. Not only that, he would not listen to me, when I told other doctors dianosed me with lupus, and told me when the morphine was finally gone from my body, I am just to take over the counter pain pills! Then, he dismissed me, as if he was a GOD. I will not go back to this man.

    In the meantime, I am only taking 60 mgs/day of the 180 mgs/day the last two doctors prescribed, the head doctor and the jerk. I am trying to get myself off the morphine, myself. I have tried cutting the 60 mgs. pill in half, only taking 30 mgs./day, but I get restless legs at night, severe chest pains, (I have a leaky valve) and severe pains in my intestines. They both are so bad, that it causes me to have headaches, raises my blood pressure and gives me diarrhea and vomiting, too. To rid of the chest pains, I have to take two of my blood pressure pills and a nitroglycerin. Eventually the chest pains go away, but the pressure in my chest, makes me sore for several hours afterwards.

    I’ve tried calling other doctors, but when they hear I’m a chronic pain patient, they show me the door. They are too afraid the DEA will come down on them, like they have other doctors. I don’t know what to do.

    I’ve read on other sites, where chronic pain patients are having the same problems, getting their medicines and a doctor, because of the DEA including all of us, honest people in their “War on Drugs.” They have no idea what we are suffering and have no medical background knowledge to make these judgements, about all of us being drug abusers.

    So, to help us all, get the word out, understanding our pain and suffering, so the DEA stops oppressing us, as patients, our doctors, the pharmacies and the honest drug manufacturers, I made a petition for everyone who is suffering or knows someone who is, to sign. It is on a White House website. If you wish to go there, sign the petition, going to everyone, including the President, here is that link:

    http://petitions.moveon.org/sign/stop-the-judgement-of?source=c.em.cp&r_by=10582339

    Please Christine or admin, don’t delete this link, it is to help all of us. Making the government, DEA and other officials to be aware that over 100+ millions of U.S. Citizens are suffering from these silent illnesses, that are ruining our lives with chronic pain.
    There is another site, where the owner is working diligently to help all of us. He is going through our same experiences and is very helpful. His name is Dennis Kinch, and he posts on this site, talking about his own site and has written a book, helping us. The site you will find him on is called, “Heroes of Healing” a pain survivor community. If you google it, you will find it. Please, tell everyone you know, who are suffering, about the site where my petition is. Ask them to sign it too, to make everyone aware that our pain, our illnesses are truly as bad as cancer patients, but just because we don’t have cancer, doesn’t mean we are not having the intense pain as they. I know this, first hand, for I took care of my dad and my fiance’, both died of cancer, pain free. They weren’t allowed to suffer, neither should we.

    Thank you, for reading this long post. Please feel free to comment, about my petition and my story. I will look forward to all replies.

    Again, thank you, Christine for your wonderful site and efforts to help us all.

  • Noreen

    Try writing to the manufacters of your medications. Many have payment assistance programs. Good luck

  • judy

    My husband sent me this link. When we met I opened a drawer and showed him all the pills I take. Two weeks later we were married. It was 16 years ago. He’s like an oak tree in my life. He is the only one that gets it.

  • Guest

    #1 neither does Eosinophilia but that’s never described on these sites that people have to use because their doctors are typically uninformed about new rare diseases. #4 the hardest thing to learn is to not overdo it. Even on good days my hr is really high when trying to do things physical.
    #6 that’s the thing, many days I have to take naps in the middle of the day either due to extreme pain or due to extreme fatigue. People don’t realize how much of a told a simple thing can take on one of us.
    #21 people actually think that I love my oxygen tank, that I like having to be on a tether everywhere I go and that I have to limit my time in stores or walking because I could overdue it again. It amazes me how many even in the medical field believe that people are just pretending to be in pain or suffering and that we somehow enjoy it.

  • Diane Espinoza

    Here is something I come into with my family a lot I am too tired to go to events , I am afraid to decline because I get responses like, I have bad health too I keep going!! Or Mom is 67 and woeks in pain she is a trooper!! It is very hurtful to me. I try very hard to manage my resposibilites . I have had several surgeries. Endometriosis and I have autoimmune disease as well as Fibromylagia and TMJ arthritis in my back.. nothing comes easy. I almost want to make comparisons my illness is worse contest. Which is a bizarre reaction. I feel like they dont believe me, staying home in bed like a crumpled piece of paper is not better than eating cake and laughing with my kids and family.

  • dje

    I am 77 years old and diagnosed with lupus over a year ago. It was a difficult diagnosis because one naturally has aches & pains at this age and the skin rashes could always be called “eczema” (steroid cream, the only treatment). After a vague skin biopsy showing possible conective tissue disease or reaction to medication the malar rash that appeared after several months was the key to my diagnosis. I went to Johns Hopkins (Lupus Treatment Center) March 2013 for confirmation. I also have fibromyalgia. Thanks for your website which I discovered researching Benlysta. I did that because my doctors here want me to go into an investigational study regarding the method of delivery for a new drug in the same family, by injection rather than infusion. I will not get a placebo. So hopefully I can get rid of the harsh chemo drug and the steroid. The things I miss the most are being in the sun and exercise. Most of the time I have some back or hip or muscle issue that make even tai chi impossible. I truly feel for you young girls, especially those with families. Have faith, new drugs are coming soon.

  • Scooter876

    I have Fibromyalgia, chronic back pain, Osteoarthritis, muscle spasms and torn ligaments in both my ankles. I got diagnosed with Fibro eleven years ago when I was a teenager. It all started with an accident doing laundry and falling down the stairs. I really enjoy reading a few of your posts. I’m an independent person myself too and getting frustrated that I can’t do things on my own. I can relate to a lot of the things you mentioned like not being able to sleep, not being able to do the things I used to like running, and just feeling tired all day even after waking up. It’s like I wish I could live a normal life and be able to do the things my friends are doing but sometimes I feel like I’ll never be able to accomplish any of my goals. The hardest part was when I had my accident, not having any friends come by to check how I was doing.

  • jessie

    #23, I hate this. My husband is actually one of the worst when it comes to this. He always says that everyone has their aches and pains. Today he actually told me that I need to learn to deal with it when I told him I hated feeling bad all the time. I snapped and we had the first fight we’ve ever had in all the time we’ve been together. He has been there since before I was sick and he has seen the decline my health went through. I don’t understand why he has such a hard time realizing that what I go through is nothing like most people’s occassional aches and pains. He even grew up in a home with a parent with lupus.

  • Vanessa Dee Grantham

    Thanks for mentioning Joy of Healing and the Overlee’s – I will research them to see if that’s a path I should be on. After having Fibro & Hypersensitivity for most my life – only dx’d with Fibro about 14 years & dx’d thru blood work for the H/S about 3 years ago – yet I’m almost 58 and I’m tired of everything I’ve tried and getting nowhere. God Bless!

  • Scarlett Spivey

    Sitting in the eye doctor office waiting to be seen and tested because I use Placquenil for lupus, I met another woman with the same diagnosis and she told me about your site: ButYouDontLookSick.com I plan to share the “Spoons” with my family and friends to give them a better understanding of how I feel. THANK YOU, Christine, for your work developing this site and connecting so many of us who face daily similar situations. After my most recent lupus flare, I began working with a therapist in Austin, Texas learning more coping skills, “new tools in my toolbox” as she put it. It is heartwarming to know there are others picking and choosing when to use a spoon. The analogy is spot-on for me!

  • Janet Komanchuk

    Thank you, Christine. I’m certain your article strikes home with sooo many. I suffered with fibromyalgia with more years than I can remember. I too am familiar with the comment, “…but you look so good.” It was usually offered at the precise moment when the pain was ripping through my body and standing let alone moving was a struggle. I was torn between violence and tears. Perhaps it was a good thing I could barely move. I often thought and sometimes verbalized, “if every part of my body that hurt were bleeding, then you could begin to understand what I’m feeling.”
    I am fortunate to have found Joy of Healing. Thanks to this unique body, mind, spirit wellness work and its founders Andrew and Tamara Overlee I have been both pain and prescription free for more than thirteen years.
    Never give up in your quest for wellness! Do the research and find the healing modality that works for you. Trust your intuition to guide you.