30 Things About My Invisible Illness You May Not Know
Many 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.
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.