I’m really excited to have a special guest post from Dinah Dowell Ostenso. She told me this story as we chatted in the middle of Whole foods for 45 minutes (that counts as a date, right?) I knew that it was the perfect tale to share with my readers during this special week honoring those of us who live with an “Invisible Illness.”
“She looks fine to me. She looks really, um, good.” he said. HE was the physician in the Pediatric ward of our local hospital Emergency Room. And “she” was my sixteen year old daughter. I took her to the ER late one Sunday afternoon after a weeklong complaint that her right lower abdomen area hurt. The pain came and went in intensity, but it had been there almost a week. She was starting to take Advil every day – and we don’t like to regularly use those medications. She no longer has her Appendix. That is another story for another day. The important part of that story is that she was only six years old and she waited all night long in pain without complaining and woke up with a fever the next morning at which point I knew exactly what was wrong. She was rushed to a city hospital with a call ahead to the surgical specialist, but by the time she was prepped it had already burst. So this girl of mine – she has a high tolerance for pain. She is a dancer. And she dances every day with grace and beauty while her toes are covered in bleeding blisters and her legs are covered in bruises. So when she came to me and we discussed whether to wait to see her regular pediatrician or to go to the Emergency Room – and she chose the ER – I knew there was a reason to go. Like most moms would say – I know my kid.
But after a ten minute interview with the ER physician, he determined that she looked just fine to him. He literally swept his arm toward her with a big cynical smile on his face and kept repeating, “She looks really good to me.” I am positive that he sees way too many patients who should not be using the ER for the everyday cold or sniffles. And that this has added to his level of disbelief when dealing with someone who he deems “looks fine.” I do get that. But, we were very clear that we had thought through our decision to come to the ER, that she really didn’t want to be there either, and that she has a high tolerance for pain. He finally ran down the list of items that he suspected could be the problem and begrudgingly decided to run tests for a few on his list. After an hour, they came back negative. He told us the news and said that he only had two other things to test for – but, since she “looked just fine” to him, he suggested we not test for them and just head on home. In exasperation, my very funny teenage girl said, “Um, oh my God, I put on mascara this morning. Of course I look fine!” At such a young age, this girl has the wisdom that all adult women have come to learn – leave the house without mascara and you will definitely run into someone you know and you will look like death. Put on mascara and voila – you look just fine and dandy! But, mascara or no mascara, how she looked was NOT the point. How she FELT was the reason we were there.
Another round of explaining my point of view, and he ran the last two tests. Bingo! We had a diagnosis. Did she need Emergency surgery or treatment at right that minute? No. But she did need a diagnosis, a referral to see a specialist, rounds of regularly scheduled follow up sonograms and most importantly a list of what symptoms would indicate that emergency intervention and surgery were needed immediately – which are possible consequences of her diagnosis. An attempt to see her pediatrician for this would have resulted in a few days wait for the first appointment, a few weeks wait to see the specialist, a few more days wait to have the initial sonogram and a few more weeks wait for the follow up appointment with the specialist – before anyone would have told us about the emergency possibility of what she has going on. That would not have been a good path for this issue. I am so glad that I have experience in this area of – “she looks just fine to me” and knew to be persistent in my quest for medical care.
You see, I have Multiple Sclerosis. For many, this is a completely invisible disease. With Multiple Sclerosis, it is possible to barely be able to see and be completely unable to drive from Optic Neuritis or Double Vision (or Diplopia) and appear fine to everyone you meet. It’s possible to completely lose feeling in your arms and hands and still “look good.” It is even possible to sleep 12 hours and wake with utter and complete exhaustion as your body has been fighting itself all night long due to the autoimmune disease source of the illness – and put on mascara to face the world without anyone noticing that you can barely function. By the grace of God and a determination to heal my body through nutrition and lifestyle changes, I only spent one year with these types of symptoms. For several years now, all of the work I have invested in my immune system has given my body the nutrients, rest, movement and stress control that it needs to support healing and keep symptoms at bay. When you meet me, I hope that I look healthy! But, I do still have plaques on my brain – literally the meaning of “Multiple” “Sclerosis” – plaques on my brain that you cannot see. I am happy to look well. But, for me and for many people with an invisible illness, the issue is the same as it was for my daughter that day. The issue is not how I look. How I feel is really the issue.
When you look just fine, but how you feel is anything but fine, you have to become your own health advocate. Being your own health advocate means:
- You have to be persistent in getting care because regardless of how you look, you do not feel well.
- You must be in touch with how you feel and you must be eloquent in describing it to the doctor in order to get the care you need and deserve. Physicians are trained to “look” for certain clues or cues. Looking good can throw them off! It is your job to explain to them that how you look and how you feel are two different things.
- Be armed with research about your symptoms, diagnosis, and possible treatments (both traditional and holistic). Read everything that you can find in relation to how you feel. Read stories of other people with similar symptoms or diagnosis.
- Be willing to stand up for yourself, over and over again. Go with your gut in being determined, especially when you are told by a medical professional that it is all in your head or you look just fine.
- Move on to another medical provider if the one you are seeing doesn’t listen to you. Don’t be afraid to try a different “type” of physician or medical care provider as well – you may find an ally in an acupuncturist, chiropractor, physical therapist, functional medicine doctor, naturopath, etc.
And finally, if you have to – tell them that you look good because you put on the darn mascara that morning! Just because you are wearing mascara, doesn’t mean that you feel well.
Dinah Dowell Ostenso (Do Well, llc) is a Certified Health Coach, blogger and advocate for healing through nutrition and healthy lifestyle habits. She earned her Health Coaching Certificate through the Institute for Integrative Nutrition and is a member of the American Association of Drugless Practitioners. Personal experience in healing and living abundantly with Multiple Sclerosis gives her great insight into helping others do the same with their chronic disease. Her previous life includes a Bachelor’s Degree in Business Administration and many years in health care marketing research. She lives in Annapolis, Maryland where she spends many of her hours playing taxi for her three teenagers. Thankfully, she is married to her high school sweetheart who is as high energy as the kids! When she is not chasing three teenagers, two shih tzu’s and two guinea pigs, she can be found trying new healthy recipes in the kitchen, writing about healing and healthy living and helping others to do well in their lives too. You can read her blog at www.dinahdowell.com and follow her at http://www.facebook.com/DoWellwithDinahDowell or http://www.instagram.com/dowellwithdinahdowell.