Christine Donato (nee Miserandino) is the founder of the e-magazine and message boards at ButYouDontLookSick.com and the author of “The Spoon Theory”. A hugely popular advocate for people with all kinds of invisible illness, she is loved the world over for her positive attitude and big heart. Here we take the chance to get to know a bit more about Christine and what she does.
Christine: “ButYouDontLookSick.com is a collection of articles, stories, personal essays, book and product reviews, with health resources and an active message board for the disabled, or those living with chronic pain or illness. We also have a chatroom, and an online store.”
Some online support facilities can actually be negative and depressing, but ButYouDontLookSick.com is a very positive place. Any ideas on what the secret recipe is?
Christine: “I think that ButYouDontLookSick.com is a positive place because it started from the essay “The Spoon Theory” which is a positive story. The idea of sharing, networking, support and friendship grew from there. If I keep those goals in mind, then we never loose focus of building friendships and support through our illness.”
People around the world adore “The Spoon Theory”. Can you briefly explain what “The Spoon Theory” is for someone who has yet to realise they are a “Spoonie”?
Christine: “The Spoon Theory was the first essay I ever wrote. It is a true account of when I was trying to explain what life was like living with a chronic condition. I used a normal every day item — a spoon – that people would see every day and so be reminded of the small struggles and choices we make every day. When you are healthy you do not have to think about every detail, like what you are eating, how long a walk to a store is, or how far it is back to your car. It is a story about using your energy, choices and consequences.”
You are known for having Lupus, but you have Fibro as well, don’t you? How do you deal with the complications of having two conditions?
Christine: “Yes, I do have Lupus and Fibromyalgia. It is common for many autoimmune diseases to overlap and to overlap with Fibromyalgia as well. I also have Sjogrens Syndrome too. I just take one day at a time, one symptom at a time. In my struggle with these diseases, I have found that it doesn’t matter what you call a particular symptom, as long as you treat it. Whether Lupus, Fibro, or Arthritis causes the pain in my hands, the pain is there and needs to be addressed.”
Lupus and Fibro are well known to mimic or overlap with other conditions, which can make accurate diagnosis very difficult. Have you got any advice for someone with Fibro who is concerned they may have Lupus as well?
Christine: “I would first recommend finding a doctor you like and trust. I also would keep a journal or a list of symptoms, when they occur etc. That way when you do go to the doctor you can explain exactly why you have the concerns you do have and you can work as a partner in your health journey.”
You always look great in photos! On the one hand I want to know how you manage it, but on the other hand how do you cope with the comments of “but you don’t look sick!” when you don’t feel good?
Christine: “Well, thanks for the compliment… I guess lip gloss and blush go a long way! But seriously, I find that if you look good, you feel good. So when I can, I do try to do something, even if it is one thing, to make myself look better. I can be in pyjamas, on bed rest, but sometimes I will smack a little lip gloss on. Even when I lost my hair due to illness, I found funky hats, and fun wigs to wear. You have to be positive or you can really drowned in depression due to these illnesses. When I was stuck in the hospital for 2 weeks with my last pregnancy I wore funny polka dot pajamas every day! Even if all you can do is brush your teeth or put your hair in a headband, sometimes it is the smallest thing that just might perk you up.”
I know you were diagnosed with Lupus in your teens and you’re still a young woman. Have you got any advice for someone young who is coming to terms with having a condition for life?
Christine: “I was diagnosed at 15, and I am now 30. I have officially had lupus for half my life. That was a hard thought to come to terms with. I know can say I can hardly remember life without lupus. The hardest thing I ever had to deal with is the thought that this might not go away. I think it is still something I struggle with every day. At times when I found it hard to deal with, I participated in my local support groups. I thank god that I am blessed with a great support system in my family and friends. I also have great support from the online friends I have met through butyoudontlooksick.com. My advice would be to reach out and talk to others with the same issues. Keep the lines of communication open.”
In the time that ButYouDontLookSick.com has been running, the community there has been delighted to see you get married and then, last year, to have your baby Olivia. Has having Lupus and Fibro affected your relationships? How do you cope?
Christine: “Yes, I have had a busy few years! A new marriage, a new house, a new baby! All good things, but they all took their toll. I would love to say that I breezed through it all, but I didn’t. There were bad days, and hospitalizations, along the way. But I would never change a thing. It is all about choices. I was on bed rest for most of my pregnancy, but my precious baby girl has made it all worth it. My marriage is wonderful and I love my husband, but we work at it. We have made our marriage a priority. We have learned to have dates even if they are movies on the couch when I don’t feel well. When we moved we learned to ask for help, since I couldn’t lift boxes etc. It is all about balance.”
As well as running the message boards at ButYouDonLookSick.com and making sure the e-magazine has daily content, you also volunteer for the Lupus Alliance and were recently honoured for your work for them. What drives you to spend so much time helping others?
Christine: “I am very passionate about helping others who live with lupus or other chronic conditions. I feel that when I was younger there were not as many resources out there to help. I always had this desire to help, but when I had my daughter Olivia, it renewed my spirit. I want her to not have to take care of me. I want to teach her that philanthropy is something we all should incorporate in our daily lives. We can all help each other so much. Even with small little random acts of kindness, or by helping with big fundraisers. We can all do something.”
And finally, it’s what ButYouDontLookSick.com is all about, so do you have any tips for living life to the fullest with a chronic condition?
Christine: “1. Be as positive as possible. Of course having lupus or any other disease sucks! but try your best to be as positive as possible. Not only is your attitude contagious, but it also does effect your overall health. There is definately a mind / body connection.
2. Network. Whether it is talking with your doctor, support groups, going online, etc. Do your research and be an active participant in your health. Find other patients who are taking the same medications, or dealing with the same symptoms. Learn as much as possible.
3. Follow your dreams, but learn to adapt. Do not ever think that just because you are sick, that you have to cancel all those dreams and plans you had for your life. You might have to change, edit, or alter them but you can still be involved in whatever passions you had before. I loved to write, when my hands hurt, I talk into a tape recorder. For those who like to do sports, maybe you can coach, or still go to games as a hobby. These are just examples, but if you learn to adapt, you can participate in a lot of the things you loved before you got sick, just differently.”