Help Your Loved Ones Support You Without a Slap in the face
What will the slap heard around the world do? Is there a movement coming to rescue the chronically ill from alienation and pain?
As we all know, actor Will Smith walked up on stage at the Oscars and slapped Chris Rock - open palm and across the face for making a joke about his wife's baldness or lack of hair - also known as alopecia. Alopecia is no joke. It is cruel to joke about someone else disfigurement in any way. I thought kindergarten taught us all those lessons. But maybe not?
I was struck with a proverbial 'slap in the face' when chronic illness derailed my life years ago and then my loved ones couldn't handle me anymore due to illness. I struggle like Jada from alopecia and relate to the struggle of the pressure of the 'beautiful people' while being different.
I'm not blaming Will, but I don't condone his violence. But I know where the rage comes from - years of being shamed and ridiculed because you're different due to out of your control reasons like chronic, incurable illnesses, autoimmune chaos in your body and difficult to diagnose and sometimes invisible disorders like Ehlers Danlos Syndrome (EDS). These diseases and pain are invisible to others most often and most of us are doing their very best to get by, despite disabilities and lost relationships as we are often outcast.
But there is a better way to handle it
I understand that loved ones do get sick of us being sick. We can be a burden. We are a burden on ourselves. Next time, instead of a slap, trying talking to your loved ones. Or maybe "shake it off" like Taylor Swift says and try to dance away the blues like this artist portrayed in The Bald Boogie shown above supported through the National Alopecia Areata Foundation (NAAF.org).
I know communicating about our challenges can be hard or even impossible with people who might be watching us turn into a different person after illness. The majority of chronic illness or chronic pain sufferers were highly-sufficient, functional individuals who never asked for this. This makes the reality of the our new dependent condition even harder to tolerate. It forces us to change how we see ourselves. It changed how you see us. And very often our caregivers around us need compassion and proper guidance on how to better support us too.
Luckily today, there are support groups you can find online and easily accessible virtually from home - but be sure to choose ones with leadership and guiding principles that teach coping skills instead of a group that mainly complains and wallows in negativity. When you join a support group you gain the benefit of seeing the stages of grief differently in everyone, but that relief in realization can make you feel understood by others who are in the same shoes. You and your loved ones, family, and friends can feel less isolated and alone.
Stages of Grief
As the chronic illness patient, you can start by helping your loved ones understand the stages of grief that you and many other disease sufferers go through. They are going through it too, but maybe silently. The stages of grief in short are explained below from from Dr. Elizabeth Kubler-Ross who wrote the book On Death & Dying.
Denial: "This wasn't supposed to happen to me" is often the immediate reaction to the trauma of change.
Shock: The reaction to the intensity of the pain both physically and emotionally it can bring when you realize it's not going away.
Anger: "Why is this happening to me" is the sentiment felt as one sees their life halted as they knew it.
Bargaining: This stage is a defense mechanism and the body and mind's way of coping with the new reality. Back and forth we negotiate with ourselves to reckon with this new reality.
Acceptance: "My body is not the way it used to be" is a common feeling no matter what your age. This step is difficult to realize because it involves accepting that changes in lifestyle need to be made to accommodate the new reality.
Plus...Reinventing Oneself: I agree to add in this final critical step as the essential rebirth to healing by really coming to terms with you new life circumstances. It allows understanding that life can still be good, just different. If this is not done, sufferers can remain in a state of resistance and can lead to depression.
I believe it's past time to teach compassion and understanding of others, especially when they are suffering. We can learn and teach our loved ones how to talk about difficult topics like dis-ease. We can stop living in the dark of any form of illness or difference. Let's teach them how to respect us as the same people who always loved and cherished us. Stand up for yourself and simply ask for the support you need. This can really transform your healing to receive this grace.
My Lessons Learned from Being Outcast by Illness
My personal struggle has been eye-opening to say the least. It taught me that those who publicly claim to be the most charitable, caring, humble, and loving people are the first ones to turn a blind eye to pain and suffering when it makes them uncomfortable. It taught me that many people’s love is definitely conditional. It taught me that blood is definitely not thicker than water. It taught me that most people only care about you when you benefit their life.
But...
It also taught me more importantly that other people’s decisions are a part of their path and learning experiences, and you can’t control those things. But what you can control is how you respond to their choices. And that's your superpower. That's what was lacking on Oscar night - the thoughtful response vs a knee-jerk reaction.
It also taught me that I could probably count “my people” on one hand, but that I’d choose quality over quantity any day. It taught me that as much as it hurt to feel abandoned or unseen by people I thought would be there for me, it made me appreciate that much more those few who DID reach out to me and who continue to support me now. To those few people, thank you!! I wish I had better words to convey my gratitude because you have no idea how much I needed someone, anyone to see me, my struggles, and to have compassion to show that someone cares. Even my tribe of strangers on social media - to you I am forever grateful.
How To Tell Your Loved Ones What To Say
If you need help, tips and suggestions on simple communications strategies - check it my ebook Dear Loved One. It has important insights on what to say, but also what not to say to a person suffering from a health scare or chronic illness. Read and download a copy to share with your loved ones.
As I trek my own journey, I'm trying to capture coping skills that I have learned in dealing with my own illness and am currently writing a book titled, Holding It All Together When You're Hypermobile on my story with hypermobile EDS. It is due out later this year designed to align and support other chronic illness sufferers, especially those with EDS. If you are interested, subscribe to get occasional updates on the book's publication.
I hope that Will Smith's shocking Oscar slap will spark conversations about difficult topics, bring awareness to alopecia and other illness, and wake people up to the sometimes unfair treatment people with illness and disability face. If not, you can learn to respond by just dancing your own bald boogie dance!
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