30 things about Kristin’s invisible illness you may not know.
Living with arthritis or chronic illness can be extremely isolating and sometimes, despite our excitement and best intentions, it can be really difficult to travel to conferences where our comrades in chronic pain gather together. Thankfully, we have dedicated colleagues in the online universe who are dedicating their time to help us out. This week, you can find comfort, advice, best practices and more amazing resources at the website for Invisible Illness Awareness Week. Several years ago, after Googling for chronic illness resources, I stumbled upon Lisa Copen’s amazing online resources. In 2002, Lisa launched Invisible Illness Awareness Week with chat rooms and over the years it has developed into a virtual conference attracting over 60,000 visitors in 2012. This year’s theme is “I Choose To…”—a statement of empowerment and decisive action. You should first choose to take part in this virtual conference—it’s easy and the dividends will last far beyond this week! Visit the website to sign up for updates, join the Facebook page, read helpful articles and listen to the incredible podcasts.
In honor of Invisible Illness Awareness Week, I’ve included my first attempt at the site’s “30 Things You May Not Know About My Invisible Illness” meme. I love Lisa’s suggestion to complete this list every year to track how your illness(es) and feelings about your illness continue to change. Learn more about the list here: http://invisibleillnessweek.com/submit-article/30-things-meme/
30 Things about my invisible illness you may not know
- The illnesses I live with are: systemic lupus (including discoid lupus) with a dash of antiphospholipid antibodies thrown in, limited scleroderma (CREST), spinal stenosis, fibromyalgia, chronic migraines, Meniere’s disease, narcolepsy, and hypothyroidism.
- I was diagnosed with it in the year: oh boy, this is a test of my memory and record keeping! The onset of my scleroderma is debatable. It could have been as early as 1985, but I noticed Raynaud’s phenomenon in 1993. I was officially diagnosed in 1996. After that it was a cascade of diagnoses every few years. Here’s the rundown on the rest: migraines in 1994, spinal stenosis in 1999, narcolepsy in 2002, Meniere’s in 2005, lupus in 2007, fibromyalgia in 2007 (onset in 1994), hypothyroidism in 2012.
- But I had symptoms since: The short answer is that my aches and pains started when I was a kid.
- The biggest adjustment I’ve had to make is: dialing back my social life. Maintaining friendships—and making new friends—has become so much harder since I became sick. I was (and still like to be) a social butterfly, but people pull away when you are sick.
- Most people assume: I am “doing just fine” and my symptoms must not impact my life very much because I continue to work full time and pursuit other interests. When I had a breast cancer scare a few years ago, I noticed that loved ones responded with a greater sense of urgency and sensitivity. This saddened me because every single day is a struggle for me with diseases we know I have and could irreparably damage my organs, my limbs or take my life (like lupus and scleroderma almost did in 2007.)
- The hardest part about mornings are: getting out of bed! Narcolepsy makes it extremely difficult to wake up my brain and all of my forms of arthritis make my joints and muscles ache and burn. The physical act of rolling out of bed usually brings with it a lot of pain. The spirit is willing, but the body usually isn’t in the morning!
- My favorite medical TV show is: ER. Although, I loved Chicago Hope as well. I have fond memories of watching these shows with my parents—both medical professionals.
- A gadget I couldn’t live without is: my iPhone, of course!
- The hardest part about nights are: fatigue sets in and despite my brain wanting to keep going, I am overcome by sleep attacks and an onslaught of pain from the day’s activities.
- Each day I take __ pills & vitamins. (No comments, please): 25+ pills and vitamins….
- Regarding alternative treatments I: believe they can be extremely helpful in combination with Western medicine. I have found acupuncture and yoga to be particularly helpful.
- If I had to choose between an invisible illness or visible I would choose: not to answer this question. I have invisible illnesses. Sometimes they are visible. This is my reality. Neither situation is great. If I had to choose, I would choose a world where healthy people would pay more attention to the struggles of the sick and try to understand what it is like to be sick every single day of your life.
- Regarding working and career: I have many thoughts on this topic on a daily basis. I am a career-oriented woman but I felt forced to give up my passion and primary career pursuit in music because of my health problems. This has caused me much unhappiness. I am proud of my success and skill level in my current career but working full time is difficult when managing my health is already a full time job. I constantly evaluate and re-evaluate my choices and how my “work” could help or hinder my health.
- People would be surprised to know: I have a lot of insecurities and live with constant uncertainty.
- The hardest thing to accept about my new reality has been: that I can’t make any decision without considering the effect on my health, or how my health will affect my decision.
- Something I never thought I could do with my illness that I did was: defied the predictions of a team of top medical professionals by growing back a portion of my index finger after I had gangrene and sepsis! I was regarded as a medical miracle.
- The commercials about my illness: are pretty spot on right now. There is a great lupus commercial that focuses on how people with lupus don’t complain or raise their concerns to their doctors.
- Something I really miss doing since I was diagnosed is: spontaneously calling up a friend to go have fun!
- It was really hard to have to give up: my singing and performing career.
- A new hobby I have taken up since my diagnosis is: blogging!
- If I could have one day of feeling normal again I would: be performing on a great, famous stage in a foreign country.
- My illness has taught me: that I am really strong, self-reliant, compassionate and empathetic. And still as feisty as I was when I was a little girl.
- Want to know a secret? One thing people say that gets under my skin is: “I know what you mean! I feel so tired too…..” or “that sucks….did I tell you what happened to me the other day?”
- But I love it when people: check in with me, just because, even if I can’t pick up the phone or call them back. When people remember that every day is tough and living with these diseases is like having several rambunctious toddlers, I feel understood and heard.
- My favorite motto, scripture, quote that gets me through tough times is: Life isn’t about finding yourself, life is about creating yourself. – Unknown
- When someone is diagnosed I’d like to tell them: I am here for you. I hear you. I am sorry you are suffering. It’s not fair! Let’s go get cupcakes.
- Something that has surprised me about living with an illness is: how insensitive and discriminatory people can be.
- The nicest thing someone did for me when I wasn’t feeling well was: took days off from his new job to stay overnight with me at the hospital when I was deathly ill.
- I’m involved with Invisible Illness Week because: it’s important to build a community, offer comfort and raise awareness.
- The fact that you read this list makes me feel: validated and heard. Thank you!