So I know it’s already Tuesday night and I’m just now talking about Invisible Awareness week, but I’m a new blogger so give me a break!
Although I’m very open about my dealings with Ehlers-Danlos Syndrome, there is still so much about EDS that many of my friends, family and acquaintances don’t know. Tonight I will share this blog with my family and friends for the first time, and I hope that they will read this entry and leave with a better understanding of what an invisible illness is and perhaps who I am. Deep breath…here goes.
30 THINGS ABOUT MY INVISIBLE ILLNESS YOU MAY NOT KNOW:
1. The illness I live with is: Ehlers-Danlos Syndrome
2. I was diagnosed with it in the year: 2011
3. But I had symptoms since: Mainly 2006, but somewhat before then as well.
4. The biggest adjustment I’ve had to make is: Pacing myself. I tend to jump headfirst into whatever I’m doing, be it a workout routine, a riding lesson, homework (OK maybe not so much homework), cleaning ad nauseam. I’ve had to learn to slow down, stretch, warm up, and take more steps in order to protect my joints and my sanity.
5. Most people assume: I’m perfectly healthy. To look at me you’d never guess I suffer from chronic pain. The most common response I get is a surprised “but you’re in such good shape!” But the reason I can function is because I work to stay in shape.
6. The hardest part about mornings is: Getting a move on. Waking up can be hard, especially when I’m having sleeping problems, but depending on what I did the day before, the weather, or if the stars align I often have a very slow start to the day until my body warms up. Again, I have to pace myself.
7. My favorite medical TV show is: House, M.D. For a while I thought I wanted to become a diagnostician because of that show. And honestly I still think I’d enjoy that…puzzles fascinate me. Conversely, shows like Dr. Oz and The Doctors just piss me off…I can tell you that no fad diet that lets you drop ten pounds in two days is either healthy or long-lasting, and I have a bachelor’s degree in Nutrition to back me up!
8. A gadget I couldn’t live without is: My TENS unit. I don’t use it every day, but sometimes it’s the only thing that calms down persistent spasms and relaxes sore muscles.
9. The hardest part about nights are: Waking up unable to fall back asleep because of pain. Nights can be so long….
10. Each day I take __ pills & vitamins: 8 pills in the morning and 3 at night, plus supplementary pain relievers as needed.
11. Regarding alternative treatments I: Fully believe in their ability to supplement and sometimes replace a traditional approach. Craniosacral therapy does wonders for my symptoms, and I only wish I could have it done more often. The key is finding balance between the traditional and the holistic, and tailoring that to your needs.
12. If I had to choose between an invisible illness or visible I would choose: I would never wish for anything other than what I have. I believe I was given this condition for a reason, and although I wouldn’t wish it on anyone, I’m glad I can use it to try to make a difference in the lives of others.
13. Regarding working and career: Right now I’m planning to substitute teach until I get into medical school. From there, I’m not 100% sure what’s going to happen. But I’m very passionate about medicine and fully believe that in spite of the pain and difficulties I’m going to face, I will survive medical school and become a successful D.O.
14. People would be surprised to know: I haven’t experienced painlessness in at least seven years, probably much longer. I honestly don’t remember what it feels like to be without pain. But I don’t let it stop me from lifting weights, riding horses (even jumping!) and keeping a positive attitude.
15. The hardest thing to accept about my new reality has been: Honestly, I don’t know what the one hardest thing is. There’s the fact that I have a 50% chance of passing my condition on to each of my children, but it’s not going to keep me from having kids. I guess EDS’s impact on my academic performance has been the hardest thing to stomach. That and the ignorance some people have when it comes to chronic pain.
16. Something I never thought I could do with my illness that I did was: Compete over fences for the Ohio State Hunt Seat Equestrian Team and qualify for regionals on the flat. Honestly I never even imagined I would ride in college, let alone be competitive!
17. The commercials about my illness: Don’t exist! Sadly, I doubt EDS will ever receive much positive publicity on television. Maybe the work I do here will help make up for that!
18. Something I really miss doing since I was diagnosed is: I don’t know, I’m so fortunate that I can still do most of the things I used to, even if it is to a lesser degree. I do I miss feeling fearless on a horse. It’s not a healthy thing to be over-confident, but I can no longer gallop full-speed through the fields around my house like I used to!
19. It was really hard to have to give up: Bitterness. On my About Me page I talk about the accident that brought my EDS to our attention. I have never blamed anyone for the accident, but the way I was treated for the next two years brought me a lot of emotional pain. Learning to let go of that was unbelievably difficult.
20. A new hobby I have taken up since my diagnosis is: Blogging! Duh, you say. I just figured having a way to both fill my need for venting and to help others with the condition, as well as potentially raise awareness, was a healthy thing!
21. If I could have one day of feeling normal again I would: Take my favorite OSU horse, Devil, out for a good long hack and do some cross-country jumping.
22. My illness has taught me: Perseverance, forgiveness, patience, empathy…this list could honestly go on forever. I struggled a lot the first few years I had symptoms, but I’ve been blessed with such kindness and grace from so many people that I have no doubt in my mind of the good in this world.
23. Want to know a secret? One thing people say that gets under my skin is: But you look so normal! Unless you’re suffering from an invisible illness you cannot understand how upsetting that innocent statement is.
24. But I love it when people: Give me a chance to explain the condition without giving me the “oh yeah I have back pain” or “my cousin is double-jointed” phrases. Almost everyone has back pain, I get it. That’s not what I’m here to talk about. I also love and cherish the relationships I have with my physiatrist, his PA, my physical therapist (she’s the best in the world!), the x-ray staff, and everyone else who has been there for physical therapy, spinal procedures and lots of tears.
25. My favorite motto, scripture, quote that gets me through tough times is: Jeremiah 29:11. I know it’s a little cliché and overused, but it has brought me a lot of comfort over the years. “For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.”
26. When someone is diagnosed I’d like to tell them: Keep moving. Be proactive. Find your weaknesses and work to overcome them. Most of all, do everything you can to stay positive. You can either watch this condition take over your life or you can do something, anything, everything, to fight it.
27. Something that has surprised me about living with an illness is: I’ve become a much more positive person. It is so easy to let something like chronic pain get ahold of you and suck the happiness and optimism out of your life, but I’ve done the opposite. I feel so lucky to be able to have such an outlook, and I’m sure I wouldn’t if it weren’t for the incredible support system I have.
28. The nicest thing someone did for me when I wasn’t feeling well was: OK this has nothing to do with EDS, but when I was in the 3rd or 4th grade I got chicken pox and our neighbor/dear family friend brought over brownies and a kit with tape and construction paper “pox” for me to tape on everyone else so I wouldn’t feel so bad!
29. I’m involved with Invisible Illness Week because: If we don’t share our experiences, how will others learn that these problems exist? And more importantly, I’ve been able to take at least some control of my condition, and by sharing that I hope to empower others who suffer to do the same.
30. The fact that you read this list makes me feel: Humbled. I want to say exposed in case any of my friends/family are reading this, because it’s one thing to share like this anonymously, but another to share such intimate thoughts with those you know. But I’m humbled that you think this matters enough that you’re still reading, and I’m hopeful you’ll share this so that someone else may learn from my experiences!