Fat Shaming and Chronic Illness

meghan-duthu-114575It’s almost mid January and everyone is probably working on their new year’s resolutions to work out more or do whatever it is they resolved to do to shed those extra pounds in 2018.

Personally, I never make resolutions, but that is a topic for another post. If I did, though, it wouldn’t be to lose weight. Not only because I believe that our society puts too much emphasis on people’s appearance, but also because I already lost some weight. I had my annual physical a few weeks ago and I lost 22 pounds. Pretty good, right? Well, not according to my doctor. There was no congratulatory recognition or positive affirmation. Nope. Just some paperwork that said my vitals and diagnoses — one of which said that I was still overweight. It even showed my weight from last year where I was over 20 pounds heavier.

I know people assume that men don’t worry about their weight, but that is total B.S. We have issues around our bodies just like women do….but that may also be another topic for another post.

While I had checked off my annual physical from my list of things to do, I also needed to find a new allergist. I have a condition called Mast Cell Activation Syndrome and finding a good doctor to treat it can be really challenging. So when I learned about a new allergist who said he knew about my diagnosis, I was feeling hopeful. We talked about my issues with the disorder and at the end of the appointment he said, “You know, you should lose some weight.” I told him that I lost 22 pounds. He said, “Well, keep it up.” In my head I said, “Thanks, jackass.” Out loud, I said that losing weight does not cure MCAS — to which he remained silent.

It seemed like everyone, everywhere I went, was fixated on weight.

Just when I managed to get it out of my mind, I turned on the TV today and saw Megyn Kelly issuing an apology for making questionable remarks in regard to people’s weight.

You can see the video here:

Why is most of society obsessed with people and their weight? Did it ever occur to people that not everyone wants to devote all their free time to going to a gym and going on fad diets?

But the biggest thing is that those of us who are chronically ill may have weight issues for a vast number of reasons, some of which are out of our control. Medications and medical conditions that keep you inactive can cause weight gain. Genetics play a role. Being house bound can keep you overweight. Having an eating disorder contributes. And on and on…

I have had weight issues my whole life. I have heard it all from all the thoughtless and cruel people out there in the world. I have learned to tune them out and though it doesn’t affect me the way it used to, it still remains an obstacle in being heard by doctors and accepted in the world. People judge you. They make assumptions they shouldn’t.

So here’s what I’m suggesting. Don’t comment on people’s weight. Don’t shame people for how they look, whether you think it is within their control or not. Live and let live.

People who are chronically ill don’t need to hear negative remarks about their appearance. We already are hurting inside about being sick and feeling bad about what we wish we could do. I wish I could be more active and I wish I didn’t have a disorder that makes me take medication that causes me to put on weight. I wish I had better genetics. But this is my life. I’m working at accepting it and myself. I don’t need your opinion about my appearance. Just because you lost weight doing x,y and z, doesn’t mean that everyone else should do it, too. It doesn’t mean it will be POSSIBLE for everyone else to do it.

All of this left me thinking that more people’s resolutions should be to mind their business more often and be a little bit kinder. Not being a jackass will make you more attractive than a gym membership ever will. Just something to think about…

Christianity: A Religion of Minding People’s Business

liz99-252849I have a problem.

I no longer see the message Jesus taught in what is modern day Christianity. I see churches and religious people minding everyone’s business. That seems to be their religion — policing. It’s almost like they ask, “How can I mind my neighbor’s life choices, sexuality, gender identity, birth control and everything else?” rather than, “How can I love my neighbor?”

And I’m not just referring to conservative Catholics or Evangelicals. Even more liberal organizations like Fortunate Families posted on their Facebook page that they understand people have been wounded by the church but their page is not a forum to “vent” and they would like to “move onward.” And that, any comments that do not adhere to that policy will be deleted. The Executive Director private messaged me and told me that he believed this was the “Christian thing to do.” Really? So, we can’t be authentic even in places that are supposed to advocate for our authenticity? Your “Christianity” once again involves policing what everyone else is doing and it’s not fueled by compassion. It doesn’t want to hear people out and delve deeper into conversation — it’s just about following the rules and making sure everyone else does, too.

Just to be clear, I am not saying that we should live however we feel like and not be held accountable for our behavior. What I am saying is that Jesus did not tell us to go around watching what everyone else is doing, and then instruct us to decide if we think it’s valid or acceptable and then go and tell certain people that they now will be excluded based on our limited evaluation.

Gay people can’t get wedding cakes in some states. Women have to constantly fight opposing legislation for their right to birth control. Catholic hierarchy is obsessed with who is doing what with whom in the privacy of their own bedroom. LGBTQ people are denied communion and proper funerals. What religion is this? Why would anyone want to be a part of a religion like that?

The answer seems to be that it appeals to people who like control. It’s a way to assert power over the congregation or the community. Is this what Jesus taught or taught against?

When I was in Catholic elementary school, we heard about this carpenter guy from Nazareth who went about healing people, including them and loving them. But you know what else he did? He got pissed. He turned over tables, rebuked religious leaders and he spoke out against injustice and exclusion—sometimes very harshly. He advocated for the outcasts in bold and rebellious ways. So much so, that it got him killed. This is the Jesus I’d like to see more of in mainstream Christianity.

But if you can’t be that radical, then at least mind your own business.

What if we let people be who they are, sans the policing? What if we gave gay people their wedding cakes and trans people respect and women their rights and people who were abused by the church their fair, uncensored say? What if we practiced loving our neighbor more than minding their business? What if we validated and affirmed people for who they are and the diverse gifts they have to offer the church and the world? Would that look more like the church that Christ came to build? I think so.

Waiting…

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Tonight marks the beginning of Hanukkah in the Jewish tradition and we are currently in the season of Advent for Catholics and some Christians.

Hanukkah is a time to remember the provision of God, especially in times when things seem hopeless.

Advent is a time of waiting…waiting for the light to break through the dark. It’s a time to anticipate with hope, the coming of salvation.

No matter what your religious affiliation, I join you in waiting for hope, healing and peace this holiday season. I know, as a chronically ill person, how difficult this time of year is.

I share with you these words inscribed on the wall of the Cologne Cathedral during the Holocaust. It’s called Inscription of Hope.

 

I believe in the sun even when it is not shining,

And I believe in love even when there’s no one there.

And I believe in God even when He is silent,

I believe through any trial there is always a way.

But sometimes in this suff’ring and hopeless despair,

My heart cries for shelter, to know someone’s there.

But a voice rises within me saying hold on my child,

I’ll give you strength, I’ll give you hope,

Just stay a little while.

I believe in the sun even when it is not shining,

And I believe in love even when there’s no one there.

But I believe in God even when He is silent,

I believe through any trial there is always a way.

May there someday be sunshine,

May there someday be happiness,

May there someday be love,

May there someday be peace.

 

 

 

Something Positive for Today

The person who doesn’t fit in with our notions of who is worthy of our love — the bag lady at the corner, the strange old man who rides through town on a three-wheel bike all strung up with flags — is just the person who, by not fitting into our patterns, insists that we expand not only our views but also our capacity to love. Today, see if you can stretch your heart and expand your love so that it touches not only those to whom you can give it easily, but also to those who need it so much.
Daphne Rose Kingma

Whisper Like An Angel
Have you learned how to whisper like an Angel
Have you learned how to stand up to death
Have you learned that life is as strong as its weakest link
Have you learned that truth never rests
Have you learned that love will save you
Have you learned how to whisper like an Angel
M.S. Morrison

The Current Epidemic Of Abuse

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Earlier this year I wrote an essay on abuse and mental illness for The Mighty. In light of the recent scandals coming out about the many people who have been abused by those in power, I feel led to re-post this:

What My History of Abuse Taught Me About My Mental Illness

Many years ago, I was sitting in my therapist’s office telling him the story of my life – childhood and teens and early adulthood. By the end of the session, I was exhausted and said, “I just wish I was able to do more.” He looked surprised and replied, “I think you’re doing pretty damn well considering your history of abuse and current circumstances.”

I left thinking about those words. First, I felt validated for doing the best I could and that my life was not easy. Life wasn’t easy, despite the many people who have reminded me on a daily basis how other people have it so much worse. But the word that stood out the most was “abuse.” I, like so many others, am a victim of abuse. For many years nobody validated this. I think abuse among men is often downplayed and minimized. We are supposed to be the “tough ones.”

As a child, I was emotionally abused and neglected by people who were supposed to love me. I was verbally abused by teachers at school. I was manipulated by a therapist who wanted to have a personal relationship with me instead of doing his job and establishing trust. Later in my adult life, I got involved in friendships and romantic relationships that were hostile, demeaning, toxic and unhealthy. They were abusive.

People who have been abused often grow up to live lives riddled with anxietydepression and a whole bunch of other mental and physical illnesses. This left me wondering which comes first? Abuse or illness? Was my mental illness the result of abuse? I think so, yes. I think for some of us, we are predisposed — and the abuse makes it worse. For others, the abuse is the direct cause of the mental illness and they can spend decades trying to heal. I lived life thinking abuse was normal. I know that might seem weird to say, but having been abused as a kid, being abused as an adult seemed like nothing new. It seemed like no big deal. I could handle it. Maybe it wasn’t that I thought the abuse was normal, I just thought it was part of life.

At one point in time, I was involved in what I will call a “relational situation” with another man. Calling it a romantic relationship definitely wasn’t the case, as there was no romance. Only the nagging feeling that something was terribly wrong. I knew the treatment I was receiving wasn’t normal. It got pretty bad. The twisted relationship began to chip away at me and I became increasingly depressed, anxious and was making very unhealthy choices. I stayed because I thought it would change. It didn’t. Things only got worse. By then it was hard to leave.

People stay in abusive situations for all kinds of reasons. A few of them that I relate to are the shame, embarrassment and fear – not fear in the sense of only fearing for your physical safety, but fear of losing relationships, fear of what the abuser will do to assassinate your character and reputation. Abusers tend to manipulate and turn people against you. They threaten to tell your secrets. To embarrass you. And yes, there is also the fear of physical abuse – hitting, punching, smacking, spitting or throwing objects at you or near you. These are abusive actions. So is punching walls or objects in an attempt to be intimidating.

The biggest thing abusers do is make you think you’re “crazy.” It’s called gaslighting. You start to question everything to the point you actually feel like you’re losing your mind. This was the breaking point that sent me to therapy. I was no longer able to cope, to make sense of the world around me, to understand the people who were hurting me. And then it was confirmed. I was most certainly being abused. Not just by one person, but by a history of people. Through therapy I was able to construct a laundry list of relationships. But when looked at closely, they were a series of manipulations, lies, deceit and pain.

Abuse can be devastating to the point where it can impact your life for many years. Sometimes, pieces of your mind are still not completely healed. You wonder if you somehow deserved it, even if you could have stopped it. You assume responsibility for the abuser in your mind. Maybe if I just didn’t say or do that, they wouldn’t have hurt me.

Actually, they still would have hurt you. This is what abusers do – they hurt people and blame everyone but themselves. They most likely are also victims of abuse (although most people who are victims of abuse usually don’t grow up to be abusers, but some do) and are doing to you what was done to them.

After attending some support groups, I realized almost every person seemed to have some story of abuse. To be clear, I am not saying that all mental illness is caused by abuse. I am saying there certainly can be a connection between the two.

In any case, if you have been the victim of abuse, know it is not your fault. Like my therapist said, “You are doing pretty damn well considering the abuse you have been through.” If someone chops off your leg, you don’t blame yourself for not being able to walk fast enough. All you can do is practice self-compassion and focus on your healing.

If you are a witness of abuse and stand by and do nothing, you are participating indirectly in that abuse. You allow it to continue. Speak up. Report it. You can remain anonymous if you choose, but do something.

If you or a loved one is affected by domestic violence and need help, call The National Domestic Violence Hotline at 1-800-799-7233.

https://themighty.com/2017/01/are-mental-illness-and-sexual-physical-emotional-abuse-related/

Online Bullying in Chronic Illness Support Groups

nik-shuliahin-251237I was recently diagnosed with something called Mast Cell Activation Disorder (MCAD), also known as Mast Cell Activation Syndrome (MCAS). It’s considered a rare disorder, although there is more and more information coming to light on the illness.

After getting diagnosed, I wanted to connect with other people who have MCAD and learn more about it. This lead me to search Facebook for support pages.

Support groups, online or otherwise, are supposed to be a safe haven. Unfortunately, online groups tend to have people in them who think that because they are behind a keyboard, they are not accountable for what they say and do.

I joined a MCAD support group looking for answers. For a while, it was okay. I learned some things. I heard a lot of people raving about a specific doctor that was supposed to be the pioneer in the treatment of this disorder. I decided to google his name and found out that he had recently opened a clinic not far from where I live in NY. I thought this was good news. It wasn’t.

After visiting his site, I saw that not only did he not take my insurance (Medicare and Medicaid), he also charged $2,000 a visit. This did not include any testing or imaging. This money was just to be in his presence. I had to email him and find out if I read this correctly. To my surprise, he emailed me back and confirmed those rates and told me that there was nothing he could do for me as my insurance was not good enough, but that he would call my doctor to give HIM a free consultation. Wait, he was going to give my doctor a free consultation? I am the one who is sick, not my doctor. I was confused and expressed that. I also explained that it was a little unreasonable to charge people those prices, especially suffering people on disability who have a low-income. He proceeded to, in his words, give me a “math lesson” about how he had to make money. I, in return, gave him my math equation to solve. I said that I was 35, on disability, spent the last 4 years sick as a dog, and own nothing except a car that is worth a few trips to his clinic. Solve that problem.

Back to the support group.

I turned to the support group on Facebook to explain what had happened and how I thought it was outrageous how some doctors want to get rich off of sick people who are disabled and have little to no money. I also asked the group for doctor recommendations in the area – ones that took my insurance and weren’t out to rob you.

What followed was absolutely appalling.

Let me start out with the positive. There were a dozen or so people who reached out in kindness and compassion. They private messaged me information and offered their support. Some commented helpful advice. Others, however, decided to bully and gang up on me — telling me I should shut up and let the doctor do whatever he wanted, as he was the savior of the world; that I was the one who was entitled and had the problem, not the doctor. I was called derogatory names. I was berated. I was told that doctors like him can do whatever they want because they are geniuses. The admins of the group did nothing to stop this. This went on for hours. My anxiety was now in high gear.

I was so outraged that people in a support group were being so harmful and hurtful and devoid of any compassion. I was livid that people thought it was okay for doctors to treat disabled patients with no regard and thought it was ethical to charge whatever they wanted. What about the Hippocratic Oath doctors take to do no harm? To help and to heal? I continued to be cornered and harassed online. I got angry and I let these people know, uncensored, what I thought. I then left the group.

Since then many people have contacted me to tell me their personal stories of being bullied in that very group. They wanted to let me know they saw the posts and comments and thought it was totally unacceptable. Only one woman, though, stuck up for me publicly and said it was unfair to gang up on someone so harshly. I understand why nobody wanted to stick up for me publicly. It was because this group was toxic and abusive and they feared the same treatment.

I have two points here.

Bullying of any kind is never OK. Bullying in an online group for sick people is so disgusting, there must be a special place in hell for people who engage in such behavior — EVEN IF you are sick yourself.

Second, there must also be a special place in hell for doctors who like to take advantage of people or who only serve rich people, while turning away people who really need their help. They have no business being doctors. Work on Wall Street, but don’t work with sick people. We are not here to pay for your vacation homes and fancy cars. Yes, everyone needs to eat and make a living and pay for their kids’ college, but there is a difference between greed and need. There is a difference between making a good, honest living and engaging in questionable and unethical behavior and practices.

Sadly, dealing with all this nonsense is typical for a chronically ill person. It can leave you depressed, anxious, angry, lonely, afraid and defeated. We must work together to end harmful behavior being done to the chronically ill, the disabled and the underdogs, while holding those at the top accountable.

Whether you’re a doctor or run a support group — be kind. It costs nothing.