Today (Tuesday, May 12) is Myalgic Encephalomyelitis (M.E.) Awareness Day. While it’s been observed each year since 1993, it takes on new meaning in the age of Covid-19. As retail stores in my home state reopen and many people resume some semblance of their normal routines, the threat of M.E. has never been greater. On one hand, the survival rate of coronavirus patients is higher than some original estimates. On the other hand, those who have recovered face an increased risk of complications like M.E. and other post-viral fatigue syndromes.
Recent studies suggest that as many as 10% of people who recover from the coronavirus could develop M.E. in the coming months. Yet funding for research to find a cure is almost nonexistent. Raising awareness and advocating for the millions of people who are affected by this debilitating disease is needed now more than ever. To find out how you can help to make a difference, visit the M.E. Action Network. And for those who are social distancing, here are four things you can do in the safety of your own home to learn more about M.E. and help raise awareness.
1. Download this Incurable #MillionsMissing Facebook cover photo.
2. Watch Unrest on Netflix.
The Sundance award-winning documentary tells the stories of M.E. patients and their families.
3. Read A Girl Behind Dark Glasses by Jessica Taylor-Bearman.
The author shares her diary chronicling her teenage years with M.E. She was able to capture her thoughts with voice-activated technology when she was living in the hospital and unable to write.
4. Explore Inner Landscapes by Christina Baltais
Artist Christina Baltais has created the Inner Landscapes collage series to bring visibility to the lives of people with M.E.
March is Endometriosis Awareness Month, and this year it’s unfortunately been overshadowed by a global pandemic. But while we’re all hiding out from the coronavirus, we may as well take a few minutes to educate ourselves.
Q: First things first; what is endometriosis?
A: Endometriosis is a chronic condition in which tissue similar to the lining of the uterus is found in other areas of the body.
Q: What is the most common symptom of endometriosis?
A: Pain is the most common symptom of endometriosis, but not everyone with endo experiences pain. Pain can be mild or debilitating, and the level of pain doesn’t necessarily reflect the stage or severity of the disease. Other common symptoms include heavy bleeding, digestive issues, infertility, inflammation and fatigue.
Q: On average, how long does it take to get a diagnosis?
A: It takes an average of seven or more years to reach a diagnosis, but many women wait much longer for answers. A lack of awareness and the difficulty of diagnosing endo could be contributing factors.
Q: True or false: the only cure for endometriosis is surgery.
A: False. There is no cure for endometriosis. Surgery is the only way to confirm an endo diagnosis and is a common treatment. But it doesn’t cure endometriosis.
Q: How common is endometriosis?
A: It’s estimated that at least 11% of women and girls have endometriosis. Despite how common it is, there continues to be a lack of awareness, delay in diagnosis and many myths surrounding the disease.
Q: True or false: the only place endometriosis has NOT been found is the spleen.
A: True. Endometriosis can be found anywhere in the body, including the brain, diaphragm and lungs. The spleen is the only organ endometriosis has not been shown to effect.
To learn more about endometriosis and to find out how you can help raise awareness, visit https://www.endofound.org/.
Q: What inspired you to create the Woosah Warrior book?
A: As an artist living with epilepsy, brain fog, trouble concentrating and mood fluctuations have always made it difficult for me to keep up with other artists. Anxiety and overthinking often get the best of me, and I find it a struggle to finish personal creative projects that aren’t linked to my professional clients. In an effort to be creative without feeling overwhelmed, I turned to coloring books as a way to feed my creativity, ease anxiety and rest.
I tried so many types of coloring books, but I never felt that they helped to accomplish my goals. The books were either too child-like and over-simplified or marketed to adults and contained extremely detailed illustrations. I found myself bored by the children’s coloring books and overwhelmed by the adult coloring books. (Brain fog is no joke, and sometimes the simplest task can feel like too much.)
In an effort to appease my wants and create something for the chronic illness community, I decided to create Woosah Warrior, which combines coloring pages with journaling questions to encourage you to dive a little deeper. I found while coloring children’s books, my mind would wander off; the journal pages provide gentle nudges to bring you back to the present.
Q: Can you tell me a little about the process you went through in creating the book?
A: This is my first dive into creating a book, so it was a bit of a bumpy road to get to the finished product. Procrastination due to fear of failure was an overarching theme throughout the process, but I did my best to work through it. I started by coming up with empowering messages for each coloring page and tweaking as needed.
Then, I thought about what type of graphics I wanted to create for each coloring page, and went through a brainstorming process for each page – deciding which style and graphics to move forward with before continuing on to create the journal pages. The journal pages were the easiest part for me to create because they correspond to the adjacent. The messages of empowerment set the tone and flow of my creation process, while keeping me inspired to finish the book.
Q: How has your experience with epilepsy shaped your art?
A: Epilepsy has shaped my art in a few ways. The first being that I’m more cautious during my design process, meaning I do not include flashing imagery or lights that may trigger photosensitive seizures in some people with epilepsy. Secondly, I began creating clothing and accessory designs for epilepsy warriors, which was never even a thought prior to becoming an advocate for the epilepsy community.
Q: What's next? Do you have any big projects planned for the future?
A: I’m actually considering a break! I began studying Herbalism this year and would like to take some time to focus on school and for some much needed rest and reflection. The past few years have been a bit of a whirlwind. I felt like I gave so much of myself away without recouping, and I’ve been facing some neuromuscular challenges. I think it’s time to focus on my health and wellness and take a step away from it all. I still intend to release a book sharing my epilepsy story, but I don’t currently have a launch date in mind.
As if the fatigue and brain fog aren't bad enough, there are several equally annoying physical signs of iron-deficiency anemia that are often overlooked. The good news: anemia can usually be treated easily with an iron supplement. But if you haven't yet been diagnosed, or are waiting for your ferritin levels to build up, the symptoms can be a real downer in the meantime.
Anemia is a common side effect of endometriosis, as years of heavy blood loss can deplete iron levels. After living with extremely low iron for years before being diagnosed with anemia and stage II endometriosis, I realized that many of the symptoms I was experiencing (and attributing to other health problems) were actually caused by my iron-deficiency. Since my diagnosis, I've had laparoscopic surgery and now take an iron supplement twice a day. Thankfully, my anemia symptoms have almost disappeared.
This is in no way an exhaustive list of anemia symptoms; these are simply some of the most annoying effects of iron deficiency that I've personally experienced and some tips for living well while anemic.
1. Angular Cheilitis
2. Difficulty Breathing
Like most of these symptoms, I originally thought the problem was stemming from something other than anemia. When my doctor suggested that I may have exercise-induced asthma and gave me an inhaler to use on my runs, I thought the problem was solved. But no matter how hard I trained or how much albuterol I inhaled, I couldn't run more than a couple blocks before my lungs would give out.
Since recovering from anemia, my lung capacity has improved by leaps and bounds. I can now run an entire 5K without stopping to catch my breath, something I couldn't even dream of when I was anemic. Unfortunately, there's no short-term solution for this problem. Less intense cardiovascular activity, like walking or biking, is the best way to maintain your fitness level until you can breathe easy again.
Another limiting factor in my exercise routine was my abnormally fast heart rate. Walking and biking, along with activities like yoga, became my best friend when running caused my heart rate to skyrocket. As a personal trainer, I often used heart rate to gauge my clients' exercise intensity, but I found that I couldn't use the same strategy for myself. You still might find it helpful to invest in a good quality heart rate monitor to keep tabs on your tachycardia if this is a symptom you experience.
4. Cold Extremities
If you work at a computer, gloves might not be practical. But running warm water over your hands every so often can keep the stiffness from interfering with typing, knitting or anything else requiring the use of your fingers. When outside or driving, I always keep a pair of mittens handy - they'll keep your hands warmer than gloves. You can also try Warm Skin All Weather Guard: Raynaud’s sufferers swear by it.
5. Static, Dry Hair
I'm a chronically dry person, so I don't expect this problem to ever go away entirely. But when I was anemic, my hair could power the whole neighborhood with the electricity it created, and I couldn't pet my dog without electrocuting both of us.
Static is especially problematic in the extra dry winter months. A quality leave-in conditioner is an anemic girl's best friend. And if all else fails, shave your head (it worked for me!).
Recent news of changing policies in regards to surveillance of people receiving disability benefits has caused an uproar in the disability community, as it should. If you're not familiar with the proposed changes, here's the (extremely) short version: The Trump administration is proposing that the social media accounts of people receiving social security disability benefits be monitored to determine whether or not those individuals qualify for benefits and to crack down on fraud.
The problem with this strategy is that policymakers are working under the assumption that a person's level of disability can be determined by the content they share online. If you have a disability, you're probably already rolling your eyes at the absurdity of this. If you're not disabled, and you're wondering what the problem with this assumption is, here are five reasons you should be outraged by this policy:
2. Every individual's experience with disability is different.
Disability and chronic illness affect everyone differently. Symptoms and limitations vary, not just between people, but from day to day. Just because someone can perform a physical activity doesn't mean someone else with the same condition can perform that activity, or even that they'll be able to do that same activity tomorrow.
Even for someone who's lived with a disability for years, it can often be unpredictable. It's not always possible to know what activities will be off-limits ahead of time or when symptoms may flare up, making simple tasks suddenly impossible. This doesn't mean they're "faking" it. It's just the nature of disability.
3. You can say goodbye to advocacy and outreach.
The social stigma surrounding people with disabilities, especially invisible ones, has been slow to improve. It's literally taken our culture centuries to get to the point where we actually view people with disabilities as human beings with inherent value (and many people still don't!). We still have a long way to go. The internet, and specifically social media, has given a voice to advocates and opened a new world of possibilities for people with disabilities who were once socially isolated.
4. Social media isn't an accurate representation of our lives.
By now, we all know that social media is simply a "highlight reel" of the most photogenic moments in our lives. According to this article from Huffpost, women spend 16 minutes perfecting each selfie they post, which adds up to five hours a week on average. The last thing we women are doing is posting selfies with messy hair and bags under our eyes, even if that's what we look like 95% of the time. And that photo of your cousin smiling at her best friend's birthday party? (She looks like she's having a great time!) What you won't see are photos of the next three days that she spent in bed, recovering from the enormous effort it took to spend an hour or two with the people she loves, while smiling through the pain.
If that's not enough to convince you that social media isn't a reliable resource, another study found that almost a quarter of everything you see on social media is either faked or exaggerated. It's simply not a good source of accurate information.
5. The most likely outcome of this policy will be cutting benefits for people who desperately need them to survive.
The incidence of fraud among Social Security disability beneficiaries is already at a staggeringly low fraction of 1%. Despite myths that disability fraud is a common occurrence, it's actually far more common to be denied disability benefits - even when you really do have a severe disability.
The most likely outcome of the new surveillance policy will be the termination of benefits for people who desperately need them.
To learn more about the policy and its dangerous consequences, check out these articles:
A Trump Proposal Could Make Selfies Dangerous for Disabled People
How a Trump Proposal Could Reduce 'Happy' Disabled People