Anyone suffering from a chronic illness knows the importance of having lots of resources at your disposal. If you’re anything like me, Google is your best friend and sometimes this leads you to online support groups. They can be a great resource, especially for people who cannot leave their home.

Facebook offers a wide range of support communities. Sometimes they help people feel less alone, which is great. Throughout the years, I have been a participant and an admin. of many support groups on Facebook. I’ve noticed that these groups tend to trigger more anxiety and frustration in me rather than helping me. Having that said, I have also met some really great people through social media and have found some fantastic resources that have helped me to cope and have educated me.

First, I want to say that nobody is perfect. There is no perfect group, church, friend, ect. So, to expect perfection all the time is not realistic or healthy. However, there are things that make Facebook communities more damaging than helpful.

I’ve noticed these 5 recurring issues…

Poor Admins: Many times, groups are run by people with little to no experience. Sometimes, the admins have experience with a specific disorder like depression, anxiety, lupus or mast cell activation disorder. While experience with an illness is great, you need to have people skills in order to resolve conflicts in an appropriate way. Rules for the group need to be established and enforced, because rules and guidelines maintain a sense of order. However, excessive rule-making and trying to micromanage people’s every word and post is highly ineffective. Someone is going to be offended by something. Some people are always offended. Admins have to be adults and let others be adults, too. In an ideal world, this would always happen.

In certain situations, the admins are affiliated with an organization or doctor. This MAY make the support group more toxic than helpful because they may be receiving funds from the organization or doctor or giving funds and grants to a doctor for research. This means the admins will be loyal to the organization or doctor before the patients and members of the group. Be cautious of these groups and never give anyone money without doing proper research.

Miscommunication: You can only interpret so much online. You cannot see body language or hear tone of voice. This leads to a lot of misunderstandings and fighting, which leads to more people fighting and then an admin having to shut down the conversation and then everyone is pissed off because someone posted a funny meme, or asked a question and one person decided to attack…now we have drama. It’s very unhelpful for people who are already stressed out and sick.

Good intentions: A lot of people have good intentions. But remember that saying about good intentions? It’s true. Someone means well, but in the end they say or do things that minimize someone’s struggle. They have the perfect advice for you. If you’d just do this yoga, read this book, take these supplements and meditate, you can be healed. Really? If that were true, would any of us be here in this group?

The trolls: Yes, there are many trolls in support groups. You would think that everyone in these support groups were there to offer support and encouragement and receive support and encouragement. The sad truth is that some people enjoy hurting other people, even those who are sick and struggling.

Lack of empathy: Some people do not know how to show empathy. They are sick and they are angry and they want to take it out on you. Or sometimes they have had to go through really difficult things alone and so they think that everyone else should be just as strong. Other people are ill, but they have lots of money, so they cannot understand why you have a problem getting a bill in the mail from your doctor for hundreds or thousands of dollars. They can’t relate and don’t necessarily care to. I used to think that us sick people were all on the same page. We’re not. There is competition, pettiness and cruelty among people in the chronic illness community. This was something that took me a long time to accept and understand.

On the whole, Facebook support groups can serve the chronically ill well. It just may take a few adjustments before we get there. I have decided to keep my interaction to a minimum. It’s what works best for me.

Wherever you get your support — from a friend, family member, therapist or online community, remember that you deserve basic respect and compassion. If you are not getting that, it’s a good idea to move on. Don’t get caught up with how popular the group is, or how well-respected a doctor is or how big the organization is that sponsors the group. Toxicity disguises itself well.

Wishing you luck on your journey.

During the holiday season, a lot of people struggle with feelings of sadness and inadequacy. That’s why I’m sharing this great blog post by Hannah Brencher, whose site you can find here.

May your holidays be filled with peace and love, even amidst the sadness.

❤💜💛💚🤞🙏Stephen

 

MONDAY #196: put those blinders on.

Nobody likes to be around angry people. I think that is a given. So, let me start off with a clarification. I am not promoting being a bitter and nasty person. I am coming to the defense of those of us who are chronically ill, sometimes with rare diseases, who are angry for various valid reasons.

When doctors don’t do their job correctly or family members judge and misunderstand you, a natural human response is to get angry. When you watch your life being stolen from you by an unknown illness or by a disease that causes you to be incapacitated, you get angry. When treatment does not, as promised, give you your health back, it’s easy to get angry. When you can’t find any answers or treatment, anger can consume you. Anger is not evil. Anger is not the enemy. I think it’s worth reiterating — anger is part of being human.

A lot of times as patients, we are labeled as “angry” or “hostile.”

I spend a lot of time educating doctors on my condition because it’s rare. So, naturally I get frustrated and annoyed with doctors who don’t really want to listen with an open mind. I’ve spent hundreds of hours researching my illness, not for fun, but to learn. I don’t like being dismissed by a doctor who is supposed to help me.

I was recently in the hospital with my mother who was sick. When I walked past the nurses station that was right across from where my mother was in the ER, I smelled strong perfume. I have allergies and a condition called Mast Cell Activation Syndrome. I almost passed out and threw up from the smell. I was angry. First, because hospital protocol is not to wear any perfume while you are on the clock. Working as a nurse in the ER, you should know better. When I asked for my mother to be moved because the nurse wreaked, they looked at me as if I was the problem. When I asked the nurse for ginger ale for my mother, she told me to go down the hall and get it myself out of the fridge. I replied, “Ok, where do I clock in?” This left me looking like the sarcastic, angry guy.

While there are many great hospitals and wonderful doctors, it seems for every wonderful doctor, there is a horrible doctor. Our healthcare system is severely broken. Sometimes the deficiencies are too overwhelming for a chronically ill person to deal with on a weekly basis. Anger sets in — and rightfully so.

Being sick is not easy. It involves a series of judgments from society, family, friends and sadly, the medical community. It involves a battery of terrible doctor appointments, uncomfortable tests and rude staff. (Yes, there are some good doctors and friendly staff, too) It involves dealing with the grief and depression and anxiety of not being able to live a full life. It involves dealing with medication side effects that cause more harm than good at times. This can be infuriating.

Don’t blame patients or chronically ill family members or friends that are angry. Don’t allow them to abuse you either, but definitely bring your compassion to the table and try to understand all we go through and why we might be angered. We are fighting a constant war. A war against our minds and our bodies — a war against the world that just doesn’t always get it.

Our God and God of all people,
God of the Rich and God of the poor.
God of the teacher and God of the student.
God of the families who wait in horror.
God of the dispatcher who hears screams of terror from under bloodied desks.
God of the first responder who bravely creeps through ravaged hallways.
God of the doctor who treats the wounded.
God of the rabbi, pastor, imam or priest who seeks words of comfort but comes up empty.
God of the young boy who sees his classmates die in front of him.
God of the weeping, raging, inconsolable mother who screams at the sight of her child’s lifeless body.
God of the shattered communities torn apart by senseless violence.
God of the legislators paralyzed by fear, partisanship, money and undue influence.
God of the Right.
God of the Left.
God who hears our prayers.
God who does not answer.
On this tragic day when we confront the aftermath of the 18th School shooting in our nation on the 46th day of this year, I do not feel like praying.
Our prayers have not stopped the bullets.
Our prayers have changed nothing.
Once again, a disturbed man with easy access to guns has squinted through the sights of a weapon, aimed, squeezed a trigger and taken out his depraved anger, pain and frustration on innocents: pure souls. Students and teachers. Brothers and sisters. Mothers and fathers- cut down in an instant by the power of hatred and technology.
We are guilty, O God.
We are guilty of inaction.
We are guilty of complacency.
We are guilty of allowing ourselves to be paralyzed by politics.
The blood of our children cries out from the ground.
The blood of police officers cut down in the line of duty flows through our streets.
I do not appeal to You on this terrible morning to change us. We can only do that ourselves.
Our enemies do not come only from far away places.
The monsters we fear live among us.
May those in this room who have the power to to make change find the courage to seek a pathway to sanity and hope.
May we hold ourselves and our leaders accountable.
Only then will our prayers be worthy of an answer.
Amen.
~Rabbi Joe Black

I have a mental illness. I have depression. I have anxiety.

I do NOT kill people.

Mental illness is not the reason innocent lives are being taken senselessly — guns are.

As someone with a mental illness, I take great offense when people try to blame lack of gun control on people who have a disability. I understand that stable people do not think shooting innocent people is okay. However, it is not fair to demonize a community that is more likely to suffer violence than inflict it.

The phrase, “guns don’t kill people; people kill people” is not entirely true. People who have access to an arsenal of weapons kill people. We don’t know the exact state of mind of these people, but we do know this — they had guns.

This was not meant to be a political essay or a commentary on gun control, but whatever gets the job done.

I am not going to list all the countries that have stricter gun control policies than the United States.  The research and statistics are out there for people to read. And if you read it, you’ll see the answer is pretty clear.

Do we have a mental illness problem in the U.S.? Yes.

Do we have a gun control problem in the U.S.? Yes.

Our community is misunderstood and marginalized enough as it is. We do not need to be scapegoated for a bigger problem that has nothing to do with the majority of us.

A very large percentage of the mentally ill are not violent. Please don’t push your misinformation and prejudices on us to distract from the bigger issue at hand.

The bottom line is that innocent lives were lost yet again. Again. I cannot bear to sit here and watch pictures flash across the screen of innocent victims, some only 14 years of age, and not cringe and shake my head in disbelief. It’s sad and heartbreaking and it’s outrageous…and it’s preventable. Not by demonizing the mentally ill, but by stricter gun control laws.

And while we are at it, let’s get more funding for out patient mental health. Let’s get more funding for mental health services in schools and workplaces.

The fact of the matter is that NOTHING is being done to help innocent victims — both the victims of gun violence and the mentally ill.

Our government has in the past and will try again in the future, to cut funding for mental health and addiction services. Right now, our government is doing nothing to stop gun violence and enact stricter gun control laws.

The problem is not with the mentally ill.

It’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…

I 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.

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.