Hi everyone I just wanted to say that I’m so thankful to the community and those who have nominated me for the WEGO Health Awards. Endorsements are now open from July 1st to July 31st. Please feel free to click on the link and endorse me and any other wonderful advocates out there.
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When things eventually go back to normal, when this curve starts to flatten but the virus is still out there, those who are at high risk are being asked to be the sacrifice.
Currently, we are giving up our appointments, our care, our medications. But the world will be asked to eventually return to normal when the virus is still out there without a vaccine. This is when those who are high risk will be the most vulnerable, this is when those who are high risk will be sacrificed. When money and the economy means more than the lives of the elderly and those with high risk conditions.
I was told the other day by my doctor that it might take a least a year for this virus to subside, unless they find a vaccine. Which means that my life is on hold. I’m back to square one. I’m back to being home bound. I know the average person thinks this sucks, their plans got canceled, they don’t get to see their friends, they are temporarily laid off, but many others like myself will be in this position for far longer.
I don’t mean to be the negative one here but I’m a realist, I see the trends. The blatant disregard of people thinking that they wouldn’t get sick because covid-19 would only kill the elderly and high risk persons. I see the trend again coming from the eventual ending of the curve. That well, “we are through the thick of it, it will really only kill the elderly and high risk.” I see people who are high risk having their jobs being in jeopardy. We will have to fight for doctor’s notes, not just for us but the people we live with who could expose us. This is serious guys. When the world is trying to return to normal we will be asked to remain isolated so we can keep ourselves safe, because unless there’s a vaccine, we will still be at high-risk and our lives matter. OUR LIVES MATTER. WE ARE NOT EXPENDABLE
Please use hashtag #wearenotexpendable and tag whoever you feel will get the story out (whether it’s people in the government or other people in the chronic illness and disability community) let the government know that we want a vaccine and reassurance that our elderly and high risk population won’t be sacrificed before they start opening the government and businesses back up. What is your plan? How will you do this so you will keep us safe and not risk our lives? Our lives matter and we are going to be expendable!
I’ve been feeling very angry lately about the world. I’m sick of people’s ignorant comments, I’m tired of the stares, and I wish people would just understand what it’s like living with a disability, what it’s like having mental illness. At the beginning of the month (man this has been the longest month ever) I had my article published about a police officer harassing me about my handicap placard. I had so many comments some good and a lot of hate. I had a couple in particular that got to me. They said something like, you need to write about the good and you are so full of spite and anger you need to spread positivity. Here’s the thing I think it’s great to be positive but spreading positivity doesn’t start change. Being your inspiration porn is not my goal.
My mother gave me some interesting not that long ago. She told me to stop caring what others think. Of course, I said back that it’s an easy thing to say but isolating when you put it into practice.
But then she told me to, “stop being silent, piss people off the way they piss you off. When someone says something ignorant, correct them. Be the activist you want to be even if it means they don’t like it. At least you will have said your peace and maybe they will have learned something”
So here’s what changes things, advocacy, getting angry when unjust things happen and talking about them. Being upset about a police officer who treats you rudely, doesn’t apologizes for it when he is in the wrong and writing about it, can change things. Getting angry and starting a movement like @rkamen and @im_still_here_sgb did when people were and are still unnecessarily leaving their homes and putting the high risk and vulnerable people’s lives in danger from covid-19 changes things #wearethevulnerable . Or when fashion labels think it’s okay to exploit those with illnesses for gain.
Don’t get me wrong. This world needs positivity especially during hard times. But I’m not going to sugarcoat the tough shit. I’m so sick of disabled people only be shown in the media if it’s some kind of uplifting story to warm all the feelings that you have in your heart. But here’s the thing, we are a forgotten minority. We are allowed to be angry and pissed off. Don’t let any one quiet your voice or tell you to be positive about injustice. Get pissed off.
So excited to take apart in #myinvisibleproject on instagram and talk about the stigma that surrounds invisible illnesses.
You never know what is going on with someone. Everyone has a story to tell. There are so many of us that have invisible illnesses that can be both mental and physical. I was born a congenital heart defect called Transposition of the Great Arteries with Mustard repair. I’ve had three open heart surgeries and four other minor heart surgeries. However, if you look at me you would never guess what I’ve been through and that I have multiple invisible illnesses. I have become a master at hiding my illnesses.
My scar will eventually fade like it usually does and you often don’t see my scar unless I’m wearing a shirt that shows it. So when you look at me I look like a normal person. This can be a blessing and a curse. Like many of us we are scared to wear our illnesses on our outside. Although I want doctors, friends, family to understand what I am going through it is also tough to open up when there is so much stigma behind invisible illnesses. If I look fine, if I’m able to walk, then it must not be that bad? That when you complain then you must be faking it.
I don’t know what people assume chronic illness is supposed to look like? What having a congenital heart defect, autism, migraines, ptsd, ocd, etc. looks like? So here’s my face. Here’s what I look like, here’s what I deal with. Pull back the layers pain is still hiding underneath the surface.
I know that the more we as a community talk about invisible illnesses and how they affect us the more we can end the stigma.
I’ve been trying to see a specialist Obgyn for many months. But I’ve been having issues with the referral. I called last week and was informed they still needed a certain part of my referral. When I called the next day to clear more issues up they informed me that all appointments were filled and there was a waitlist. I then called my case manager and she called them yesterday only to find out that all appointments were on hold due to coronavirus. I’m so frustrated I’ve been trying to see a specialist doctor forever for my issues. So far I believe I still have my cardiologist check up appointment at the beginning of April but we will see. I know that if these appointments are canceled that a couple of things will happen, my referrals will expire (which I know will happen with my Obgyn specialist one) and I won’t be able to make the appointment till my summer break, assuming things have stabilized by then.
Anyone else having this trouble? How are you dealing with it?
I’m just going to say it, We can be a selfish race. We cry and complain about not being able to go to the vacations, concerts, and parties we had planned. We think about ourselves. We are upset about our own plans and are restless inside our homes. So instead of listening to CDC and WHO there are so many that complain, then do it anyway. “It’s no worse than the flu.” As the virus hides within you and then infects someone who is vulnerable. It’s just the elderly, the unhealthy, darwinism.
What happened to our humanity? Our preservation of life and the people that we love?
Stay home.
If you can, stay home.
If it’s not necessary, stay home.
If you don’t care about yourself, think about your friend who might not know they have an autoimmune or heart disease. Think about your parents, your grandma or grandpa.
Think about the vulnerable. Stop being selfish. It doesn’t look good on you.
Around 40% of the US population has a chronic illness! Take care of your neighbor, your friend, your grandparents. Stay home. Practice social distancing.
Thank you to @rkamen and @im_still_here_sgb and others who spoke up and started using the hashtag so we can put a face to those who are vulnerable.
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Washing your hands and keeping your hands away from your face are the first things you hear from the CDC when Covid-19 broke out. Simple tasks that should be an easy thing to follow for the everyday person. But for someone like myself with dermatillomania the task is far from simple. Dermatillomania is related to OCD and is a condition when someone has the urge to repetitively and compulsively pick at their skin. Skin picking can be a reaction to stress and anxiety.
My dermatillomania causes me to often pick my lips, fingernails and toenails till they bleed. This condition has often caused shame and scars. I remember sitting in a doctor’s waiting room as a child, picking nervously at my nail beds, biting and tearing at skin. Peeling away any loose skin I could find and then getting frustrated when I started to bleed. My mom would put her hand over mine and say to stop picking but the more I was forced to stop the more I felt this urgency to pick. My lips were not an exception. Whenever I was stressed I would also often find myself subconsciously picking at my lips. I would be talking to someone and while I did it I would just start picking at my lips, finding every dry skin I could and remove it.
Covid-19 has caused much stress, anxiety and uncertainty in our world. Because of this uncertainty and anxiety it has caused my dermatillomania to flare during a time I should be keeping my hands far away from my face. My lips are usually my go to when I want to pick. I don’t usually know I’m doing it till they start bleeding, which can be dangerous if I’m not paying attention. It has been said that Covid-19 can remain on surfaces for up to three days which can be critical if you touch your face often even if you are super careful about washing your hands.
To help prevent myself from picking and protect myself during this pandemic I have tried several techniques. I have started wearing gloves when I go out in public. I can’t control the outside world so when I go out I make sure I protect myself from subconsciously picking. Gloves seem to help me from picking my nails and help protect me from unclean surfaces. For my lips I try to wear some kind of lipstick or chapstick that does not dry my lips out. That way my lips are moisturized and I feel the need to keep the color of the lipstick on so I don’t pick away at it.
Do you have dermatillomania, skin picking disorder? How has Covid-19 affected you?
I don’t like attributing my mental health to one singular thing. Because mental illness and diseases don’t always work like that. They are layered with many complex attributes with many things that cause or trigger them. However, Chronic illness has always played a part in my eating disorder.
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Food and I always had a complex relationship, but after I had my second open heart surgery in between my freshmen and sophomore year I started losing weight. The more I lost weight the more in control I felt over my body.
Starving myself was never about being skinny
My whole life my sense of control was always being taken away from me.
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I had my parents and doctors who told me what needed to be done with my body. I had scars from surgeries I didn’t know how to embrace. I was in high school where no one quite really knew what I was going through. My friends would joke about my illness and I would play along never going too deep into how I was feeling. Part of me didn’t even know how I felt, all I know is that I felt in control of my body and my life the more I didn’t eat.
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As I’ve gotten older, I still fight my eating disorder and when my chronic illness gets more out of hand, I feel myself being pulled to bad habits. But I’ve understood that taking more away from my body isn’t going to give me more control over it. My body needs nourishment to survive. I held a lot in over the years, the more I talk about my experiences living with a chronic illness and how it has affected me on many levels the more “control” I feel over it. I’m no longer a passenger to my illness, to other people’s comments on my illness and I’m no longer afraid to take control over my health.
Continuing on the perfectionist series I have to add a nod to my favorite feminist heroes, Carrie Fisher. She once said “Stay afraid, but do it anyway.” I hit me so hard that I
Carrie Fisher had it right. As she did with many things. It’s okay to be afraid of doing things and taking chances but the most important thing is that even though you are afraid, you don’t let that fear hold you back.
I got this lovely shirt off of Amazon and I’m wearing my @awarecauses necklace for invisible illnesses and mental health.
Edit – just in case you wanted to get the shirt here is the link from amazon. They come in both men’s and women’s sizes https://www.amazon.com/dp/B07TK415PD/ref=cm_sw_r_cp_apip_WVtYSwcRC7498 Also check out @awarecauses https://awarecauses.com. They have necklaces and pins for many causes. I have both the red and white one for red for chd and white for mental health/invisible illness. There are many other colors for any cause you support
Having mental or chronic illness sucks. Sometimes we have to remind ourselves not to compare and that not being able to do as much as others does not make you less than.
The most important this to remember is to take care of yourself. Your health is more important then proving a point to others or to yourself. Take time for your mind and your body today, this weekend, this month. Whatever time you need. Take it easy on yourself. Your body and your mind will thank you.
Amelia Blackwater 