I’m using the disease that at one time knocked me down, to help support others learn to live their life to the fullest!-Kate Straus
What chronic conditions do you live with?
I have multiple chronic conditions. They first two I was diagnosed with are major depressive disorder and generalized anxiety disorder. I believe I have had these conditions most of my life but was only diagnosed at 21. In 2012, I was diagnosed with fibromyalgia after seeing many doctors and specialists who thought my “pain” was in my mind and due to my depression. It took 2 primary care doctors and 3 rheumatologists to diagnose me and properly treat my fibromyalgia. Two years later, I was diagnosed with Chronic Fatigue Syndome/ME/SEID. Between my fibro and my CFS, to this day, I could sleep all day long and never feel refreshed. During my journey with those two conditions I was diagnosed with chronic costochondritis which brought me worse pain than my hardest fibromyalgia flare. It is managed with chiropractic work. Nearly two years ago, I was diagnosed with Complex Regional Pain Syndrome (which is a common co-morbid diagnosis with fibromyalgia) and was treated by a physical therapist where I made incredible gains. It along with my allodynia flare and recede frequently and I have to just accept it and work around it.
What’s is the most common misunderstanding about you or your condition?
I think the most common misunderstanding about any of my conditions are that people think they are all in my mind. They are all invisible and therefore not understood by many. Even a relative called my fibromyalgia an “exclusionary disorder” which, in a sense it is, but invalidates how it affects my body.
What’s one thing you wish you knew when you got diagnosed?
I hadn’t heard of fibromyalgia before being diagnosed, which is slightly surprising because apparently my father, who worked in virology for 30+ years did research on fibro and CFS.
What’s the most ridiculous thing a doctor has ever said to you?
My first doctor that I brought up the concept of fibromyalgia said two things. They weren’t funny, but they were insulting. At the time I was severely depressed. So, when I brought up fibromyalgia which basically had ever symptom I was feeling, she said that it was just my severe depression and that can cause body aches. When I countered her, she said, it’s not fibromyalgia because fibromyalgia isn’t real. It’s a made up (again) exclusionary disorder that people are diagnosed with when doctors can’t find an answer for the symptoms their patients display.
How has chronic illness shaped your relationships?
I’ve learned who my true loved ones are. This includes family and friends. I’ve lost friendship and gained them as well. I’ve connected with people who have the same diagnoses as I do and they’ve been very meaningful relationships. I’ve learned not to sweat the small stuff.
Tell us a funny story about when nothing went to plan…but the story is one good one to tell!
So, I was in a kosher supermarket and ran into an acquaintance of mine. She asked me how I was doing and I told her that I was in a lot of pain due to my fibromyalgia. She then asked me what I was up to and I told her that I was headed to visit a friend in FL. She looked up to the ceiling, put her hands out, and said, that must be nice! I made a blog post about it.
To what do you attribute your ” daily will?”
I developed a quote early on in my Certified Fibromyalgia Coaching training. It is the signature of my business email and it says: “I’m using the disease that at one time knocked me down, to help support others learn to live their life to the fullest!” I am an educator by training and I love research. My daily well is to help others feel better because when they feel better, so do I.
What alternative treatments or therapies have most helped you? Any that surprised you by how effective they were?
So, when I lived in Pittsburgh, I saw a chiropractor and naturopath regularly. I don’t do that now unfortunately because my insurance doesn’t cover it. The vitamins and supplements plus the major adjustments done by my chiropractor significantly reduced many of my symptoms. I’m not always a believer in alternative treatments because my father, when he was alive, was the head of the NIH Institute for Complementary and Alternative Medicine (now called the National Center for Complementary and Integrative Health) did a lot of research on the most popular supplements and the research always came back with inconclusive evidence. But, I have since learned there ARE things that work, especially when they are used in off label usage.
What has been the hardest thing you’ve overcome with your condition?
The hardest things I’ve had to overcome is the stigma attached to “invisible illnesses.” I don’t *look* different but I have so much going on in my body and most people don’t have a clue. So I stand strong and proud and share my journeys because they’ve made me who I am today. Every day, I learn something new that I apply to my journey in hopes I can share it with others.
How has “being disabled” changed you as a person for the better?
I’ve learned that it’s okay to not be okay. I’m very stubborn and would push through my pain and tears. On days when I hurt, or when I am foggy, I let myself relax. Being on disability allows me to do that. I’m not embarrassed at all by the fact that I am on disability.
What made you decide to become a chronic illness advocate and start your blog or social advocacy account?
A friend in a fibromyalgia facebook support group let me know of a woman who was starting training for people with fibromyalgia to become coaches. In my classes with her, I learn a lot, researched a lot and after graduating from the initial program, I developed my website and facebook page. With my fibromyalgia, I had to give up my job of teaching. I am in the service field and I missed helping others, so I feel like this fell into my lap at just the right time!
What immediate changes or improvements in patient advocacy would you like to see happen over the next 5-10 years?
I would love for mainstream doctors to be more open to alternative treatments, and be more accepting of “invisible illnesses.” I’d love there to be more research for chronic illness and for medical teams and advocacy teams to work together to research treatments and potential cures for these illnesses. And with regards to fibromyalgia itself, I’d love for people to really pinpoint what causes it and if there are any early warning signs to be aware of.
What is the one thing you are MOST proud of yourself for achieving despite your condition?
I’m not someone who speaks out, but I have learned to do so. I’ve learned to protect myself from naysayers and to advocate for myself in front of doctors and other healthcare providers.
What are your favorite life hacks for getting things accomplished day to day… while overcoming the fatigue, brain fog and all the symptoms?
I use the notes section on my phone. Paper no longer works as I lose it. When I’m too tired or in pain or foggy to type, I use voice notes.
What advice would give to someone newly diagnosed with your condition?
It only goes up from here. There is a famous Yiddish phrase: Think good, and it will be good. Attitude affects how you feel emotionally and physically. Being diagnosed with these conditions don’t mean I still can’t live a fulfilling life.
What legacy do you want to leave for the next generation of chronic warriors?
Hope. It’s a simple one word answer but when you get a diagnosis that is considered “invisible,” sometimes you become invisible too but you don’t have to be.
How can warriors connect with you?