July 2024 Zebra Spotlight: Corinne Woodland

admin@michigancreativeZebra Spotlight

Hello, my name is Corinne Woodland. Whereas I have a basket full of chronic illnesses, the one at the root of most of them is Ehlers Danlos Syndrome (EDS), Hypermobility type. I was born with EDS, but was not diagnosed until I was in my late 20’s. My diagnosis made a lot of my previous medical mysteries make sense. I was the first person in my family to be diagnosed, but since then, two more family members have been diagnosed, and a handful more will likely be diagnosed in the near future. My joints are visibly very hypermobile, but others who are diagnosed in my family aren’t as obvious.

Along with EDS, I also have POTS (Postural Orthostatic Tachycardia Syndrome), which is very debilitating. I also have Narcolepsy with Cataplexy, Migraines, Peripheral Neuropathy, Mast Cell Activation Disorder, Fibromyalgia, Mitral Valve Prolapse, Asthma, Allergies, and I’m sure I’m probably missing something. I also have mental health diagnoses: Generalized Anxiety, Major Depression, OCD, and PTSD.

I am a former middle school teacher, but I had to leave teaching because my health couldn’t keep up anymore. I am a mom, and I have three cats and a dog. I like to do and see theatre, garden, read, and make crafts. I’m an ambulatory wheelchair user, which means I sometimes use a wheelchair, but I am also able to walk. I use my wheelchair anytime something might require a lot of walking or standing.

5 Invisible Symptoms

  1. Widespread chronic pain, at all times. There is never a time that I am not in pain. I am in levels of pain at any given time that would completely debilitate a “normal” person. I’m just pushing through because I have no choice. I know it seems hard to believe, but I am truly always in significant pain. I don’t know what it’s like to not be in pain. Sometimes I have to make decisions about what might cause the least amount of pain – For example, I’ll be in less pain if I use my wheelchair instead of walking or standing, but I’ll also be in pain from sitting for so long. I just choose which pain I’d rather deal with, along with other factors like fatigue.
  2. Extreme Fatigue. Fatigue isn’t the same thing as being tired. It’s full body exhaustion. It feels like trying to walk through chest high jello while wearing a wet, weighted bodysuit. With fatigue there are more calculations. If I do this activity today, will I be able to take the necessary recovery time tomorrow? Is it worth it?
  3. Dizziness, pre-syncope, fainting, tachycardia (very rapid heart rate), blood pooling, nausea, problems with body temperature regulation. These are all part of Postural Orthostatic Tachycardia Syndrome, or POTS. They say someone with POTS is working three times harder than an average person to do all the same activities. Describing all of them would take pages, but POTS contributes significantly to extreme fatigue.
  4. Excessive Daytime Sleepiness (or the other EDS) is one symptom of my Narcolepsy. I wasn’t diagnosed with Narcolepsy (with Cataplexy) until I was 36. I didn’t know my symptoms were Narcolepsy because it didn’t look the way it does on TV and movies. Trying to figure out which medications work for me is difficult, but I’m grateful for them. I didn’t know it was possible to feel awake. I thought everyone felt this way and could barely keep their eyes open.
  5. Migraines. My migraines are severe and happen often. There actually isn’t a single day that my head doesn’t hurt. It hurts all the time, every day, every minute. My neurologist says that’s all part of my migraines, but to me, a more severe headache is what I consider my migraines. Traditional treatments and medications have been only minimally helpful, as a lot of my migraine pain comes from the extreme instability in my neck. I take medications and receive Botox for migraines, but those can only do so much when my neck is constantly out of place.

4 Things That Help Me Manage Pain

To be quite honest, my pain is not super well managed. Each day, it’s a game of how to take the
edge off and manage injuries/more severe pain areas. Here is what I attempt to balance to help
as much as possible:

  1. Medications – light pain meds and muscle relaxers. I cannot tolerate narcotics.
  2. Ice packs and heating pads. I have different ones for different body parts stashed all over the house. Not a day goes by that I don’t use them.
  3. Braces – I have custom braces for many parts of my body and a few store-bought braces. I wear AFOs (ankle foot orthotics) which are helpful and help me not fall as much due to my extremely lax ankles. 
  4. “Alternative” therapies – massage, acupuncture, Biofreeze or other cooling topical pain relief, KT tape.

3 Ways My Life Has Changed

  1. I’m no longer able to work in my chosen career. My conflicting symptoms and conditions had me constantly out sick and in doctor’s appointments while I was teaching. I pushed through for a very long time, longer than I should have, but my body finally gave out. I miss my students a lot, but I don’t miss the suffering my body was enduring while teaching.
  2. I used to do a lot of theatre and dance. I haven’t done any in a long time, partially because of being high risk for Covid, but also, because I’m much more careful about what I try to take on and what I put my body through these days. 
  3. I have had to learn to listen to my body and try to give it what it needs. This is quite a change from pushing through and trying to ignore things, and act like I was fine. This has been quite difficult to learn to do, and I’ve been working at it over a decade now. It’s hard work, but it is definitely necessary and I’m grateful to have made progress, so I don’t cause further damage

2 People Who Inspire Me

  1. Ali Stroker, who was the first actor to use a wheelchair to appear on Broadway, as well as the first to be nominated for, and win a Tony Award for her performance in a revival of Oklahoma. Ali has broken barriers for disabled people in theatre and has proved to the world that not only can disabled people and wheelchair users be onstage, but that they SHOULD be, and have every right to be. She has proven that audiences will accept mobility aids onstage and actors with diverse physical capabilities. She has proven that disabled actors are not an “inconvenience” for having different needs than able-bodied actors, and that it’s well past time for us to have the same opportunities too.
  2. Marlee Matlin, an activist and the first Deaf actor to win an Academy Award for her performance in Children of a Lesser God. For many, she was the first actor with a disability seen on the big screen. Winning an Oscar and the spotlight that followed allowed her to advocate for Deaf and Hard of Hearing people, as well as disabled people in general. Marlee Matlin does not mind being assertive and speaking up when she feels an issue needs attention. Among other things, she is active with the National Association of the Deaf, and the American Civil Liberties Union, tirelessly advocating for disabled people in the United States.

1 Thing You Want People to Know

Doctors and other people may try to tell you there is no point in seeking a diagnosis for Ehlers-Danlos Syndrome because there is not any treatment, and the most you can do is manage symptoms. While that is true, that overlooks very important, perhaps even THE most important reason to know for sure if you have EDS. 

Ehlers Danlos Syndrome is a collagen deficiency, and it affects every single tissue in your body – your organs, your skin, your eyes, your hair, even your fingernails. Every single tissue in your body is abnormal. It’s very important to know this as you may experience complications in other “normal” medical care that you wouldn’t otherwise experience. Things like slow healing, stitches pulling out of skin, infection, organ rupture . . . even the way you absorb medication. A lot of people with EDS have strange reactions to medications. Some medications may be less effective while others may have a more dramatic effect than they do for others who do not have EDS. 

Abnormal tissues do not absorb medicines like normal tissues do. Narcotic medications can cause MORE pain in people with EDS rather than alleviate pain, as intended. Those with EDS commonly encounter problems with anesthesia for this reason. This is the biggest thing that makes me encourage people to find out for sure if they have EDS. Personally, I had a terrible reaction coming out of anesthesia in a surgery, several years before I found out I had EDS. It was scary and a terrible feeling.

So yes, while there is no set “treatment” for EDS, and yes, you just manage symptoms the best you can, diagnosis can be crucial as it relates to all other medical care for all other conditions, for the rest of your life. It’s imperative that you understand your body, have a definitive diagnosis, and be able to communicate that to all your healthcare providers before, during, and after any medical procedures. This is often not mentioned and very overlooked, but it could be life-saving to know you have EDS.

Lastly, I want to tell anyone who has been discouraged from seeking diagnosis to continue to self-advocate, even when people minimize your concerns. You know your body best, and your knowledge is crucial for ALL of your medical care, not just for EDS itself.