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.

Not Answering My Phone Is Part of My Prescription Regimen

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Turning off my phone or just not answering it can be as important as taking medication, sometimes.

There is a difference between isolating and having to turn off the outside world for a few weeks while you are experiencing a flare up of symptoms. Sometimes the outside world doesn’t understand the struggle. Friends call to complain about their problems, ignoring yours and family members don’t understand why you just can’t suck it up. It seems everyone wants something or has advice to give you. This is when I write myself a prescription for not answering my phone or returning calls until I am feeling better.

When you are sick, learning to take care of yourself is essential. You have to learn what triggers your illness and what diet is best for you. It can be challenging to keep stress to a minimum. Unfortunately, this means taking a break from certain people in your life.

There are two types of people I’ve learned to avoid.

People who are so self-absorbed, they don’t realize there is life outside of their own.  These people are obsessed with themselves and their problems. They are mostly benign people, but are just very thoughtless. It never occurs to them to ask how you’re feeling and that calling you to complain about petty problems for the 100th time this week, might not be a good idea. You may not even hear from them unless they have a problem or favor to ask. In a nutshell, it’s always all about them. They may or may not be aware that they make everything all about them, but they do. They do this even when you verbalize that you are ill and not feeling well. They are the type of people who will visit you in the hospital just to vent to someone about their problems. Most likely you will find yourself shaking your head after dealing with them.

People who flat out do not care about you or what you are going through. These people are malignant and lack empathy and compassion. They refuse to consider what you are going through. They are angry that you are sick and will say cruel and heartless things to you without even flinching. They never miss a chance to invalidate your feelings and treat you like shit when you are down. With these people, you cannot win. Not only do I not take calls from these people, I’ve learned to eliminate them from my life.

Not everyone will understand my need to disconnect in this way. I’ve noticed that some people will leave irritated voicemails or make snide remarks. That’s okay. This reminds me of who I am dealing with. Kind of like when you take a pill and it gives you a reaction and you think, “I really need to change meds.”

I know I wouldn’t be able to live without my prescription for no phone calls. It’s a medication that I depend on to keep my sanity.

5 Things I Needed To Unlearn About God And Sickness

StockSnap_B36FFD2E1BReligion and spirituality can be a great source of comfort for people who are going through a hard time or dealing with chronic health issues. They can also be incredibly damaging and harmful if presented in the wrong way.

Sometimes well-meaning people say really stupid things.  Over the years, I’ve heard such sentiments as, “God never gives you more than you can handle” and, “This is happening for a reason.” I couldn’t disagree more. Sometimes there is no reason and most importantly, nothing evil or harmful ever comes from God. If your God makes you ill, find a new God.

We sometimes need to correct our mental image of God when we are facing illness. Here are some important points to keep in mind. They have helped me cope and still maintain my spirituality.

God did not make you sick. No matter what your religious affiliation, any God that gives you an illness because he/she/it loves you is the equivalent to the abused partner being told they are being beaten by their spouse because they are loved. If that’s the case, then that’s not love. Toss this image out.

For me, God does not will anyone’s suffering and God does not give people diseases or disorders. I am not a theologian or religious leader, but as far as I can tell, we live in a universe that is free. People are free and so are viruses, bacteria, and the cells in our body– sometimes they misbehave.

God does not blame you for your illness. Since God did not make you sick; God does not blame you for your illness. We get down on ourselves wishing we could do more or be more, ect. The people in our lives might think we should be trying harder or taking a certain course of action that doesn’t work for us.  I think God has more compassion and acceptance than humans do.

Prayer can be helpful. Sometimes prayer can cure illness instantaneously, but more than likely, what prayer does is open your mind to guidance. You are lead to helpful doctors or support groups. You come across insightful books and people. You find the inner strength to get through the day when you thought you couldn’t. You find a medication that helps you a little. God is always on the side of good and healing, even if that healing takes place over long periods of time.

Healing is not always going back to the way it was before. Healing does not always mean that everything will be erased and perfect as it was before. Healing can take on many forms. Be open to the different ways it can come.

A toxic religious community will only make you worse. You may have a hard time breaking with tradition, but if you continue to stay in a church or religious community that is very toxic, you will only get worse — mentally and spiritually. Find a place of worship or spiritual group that is kind, loving and accepting of you and your disability full stop. No hidden agenda. 

Our universe is a mystery. Suffering is a mystery. I don’t have all the answers, but I do know that if God exists, it’s in the form of love, hope, healing and peace. Anything less is not a god worthy of worship.

Personality or Chronic Illness Clashes?

Personalities tend to clash. So why wouldn’t chronic illnesses?

Sometimes we meet people with a similar health issue and we think that they will be the perfect friend or partner or whatever, only to be disappointed. The truth is, sometimes we clash – just like people with different personalities tend to clash.

In my struggles, I have found that my family members and friends WITH chronic illnesses, mental or physical, are the people I clash with most. Ignorance is easier to death with. It’s more bearable for me to be dismissed by someone who doesn’t understand, than to have to feel misunderstood by someone who knows what it’s like to be sick. That’s the worst.

A friend may have anxiety, but they deal with it in their own unique way. The problem is, they expect you to deal with it their way, too. A family member may have a chronic digestive condition, but they think their condition is worse than yours and they are not respectful of the ways you try to manage your condition. A partner may have depression but their depression expresses itself different in them than in you and so they don’t always get it.StockSnap_SSST3Y5C3E.jpg

I remember joining a Facebook support group that helped people struggling with mental illness. It was helpful at first, but then started to get out of control. Everyone’s personalities and illnesses started to clash. People were upset literally on the hour over posts and memes and comments. My phone started to ding with a Facebook notification every 20 minutes with a disgruntled person expressing their anger. The group moderator wanted to appease everyone and wound up creating a situation in the group that was difficult to manage. I ended up leaving the group because it was not healthy or helpful – at least not for me.

I started talking about this with my therapist at the time and he said something that I still wrestle with today. He explained that personality and mental illness are not really linked. He went on to say that they can affect one another to a degree, but the bottom line is that if you are selfish, you will be selfish with or without your chronic illness. If you are petty, you will be petty with or without your chronic illness.

I don’t know if I agree with him or not. I know I have days where my anxiety makes me irritable and antisocial. I have days where my chronic digestive problems and allergies make me depressed and affect my ability to communicate effectively. This may lead people to make certain assumptions about me.

What I do know, is that many of us with mental or physical health issues will clash with members of our own community because that is life. We may trigger each other and press each other’s buttons. That’s a given.

I wonder if we can be more mindful of this. I wonder if we can still grow as people despite our issues and the obstacles that present themselves daily. Can we have anxiety, but still have manners and be polite? Can we, if we are having a good day, remember to show appreciation to the people who have stood by us? Can we have IBS and still say I’m sorry for something we did that legitimately hurt someone’s feelings? I believe so, yes.  I think it’s important to strive for this.

Let’s go easy on ourselves, but also strive to be better people in the process.

 

What Vacationing Is Like When You’re Sick

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It’s summertime. Everyone is getting ready to take trips and vacations. I have mine booked. I remember a time when I would have been really excited to go. I would count down the days with tons of anticipation, but as someone who battles a few different health issues, vacations can turn into more work than fun.

I miss the days when I didn’t have to explore the area I was visiting to see what kind of ratings their hospitals have. I miss worrying about how many activities I will be able to cram into my week’s stay instead of worrying about how my health will impact what activities, if any, I am able to do. Googling nearby grocery stores and pharmacies and organic markets have become more important than beach activities or sightseeing.

I am grateful to be going away, but when you are sick, traveling is tough. The prep time is exhausting. There is the job of meticulously packing all the medications, creams and special foods. The fatigue from traveling can eat up a lot of the time you’d rather be spending on enjoying the trip. Anxiety can also take over as you begin to think about all the things that may happen. Coping with this anxiety becomes a central focus.

Spending the extra money on a suite with a full kitchen is important for me, since I have food allergies and digestive issues. I have to cook most meals myself. These rooms are generally very nice. They are spacious and have an apartment-like feel. Some people might get the impression that I am traveling in style just for the fun of it, when really it’s a necessity and it’s costly. I really miss the days when I could stay in a cheap one bedroom motel and eat out anywhere I wanted.

If you are a flyer, which I am not — then you have a whole bunch of other obstacles to deal with that are both mentally and physically exhausting.

Sometimes it’s just nice to be sick in a different place than the one you are usually in. A change of scenery can be helpful in feeling better mentally. The problem is that traveling for a sick person involves more preparation, mentally and physically, than a healthy person. Healthy people use vacations as a way to recharge and relax. When you are sick, you usually need a vacation from your vacation.

I realize this may sound like nothing but chronic complaining to a lot of people, but this is what chronic illness looks like.

I am hoping to enjoy my trip. I hope and pray I will feel good, or at least decent. I’m wishing all of you safe and healthy travels this summer — tough as it may be.

Gifted, Gay and Chronically Ill

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I remember hearing Episcopal Priest, Fr. Ed Bacon, say on the Oprah show that being gay was a gift. Oprah was shocked to hear any clergy member put homosexuality in such a positive context. As a gay man, I immediately understood what he meant. It was a gift because it taught me from a young age to be brave, courageous and speak out against injustice. It taught me how to live authentically. It taught me how to advocate for myself and for others. It taught me not to pay attention to those who would put me down or try and tell me that I was less than. It also opened me up to community. Little did I know that years later I would need these skills to deal with chronic health issues.

I am so grateful for all the voices out there, both big and small, who are speaking out and raising awareness not just on the issues of chronic illness, but also on LGBTQ+ rights.

This month, in honor of pride, Billboard asked celebrities to write “love letters” to the LGBTQ+ community. This one particular sentiment jumped out at me. Singer Kelly Clarkson wrote:

“It always makes me feel sad when someone from the LGBTQ community comes up and says thank you so much for being supportive, and how hard their life has been, and how helpful it is when people in the spotlight use their influence to help others. It shouldn’t be this rare, unique thing. It should be a no-brainer to lift, and support everyone, in every community, and encourage people rather than fear or judge what is different from themselves. I can’t wait for the day when there’s not a need for someone to be thanked for doing the obvious.”

We are called to come together to support one another. To lift each other up and give encouragement. Now more than ever, our world needs love and support. Those of us who are chronically ill know the judgement and ridicule we get from the world around us, especially if we are LGBT+. The good news in all of this is that we know how to be strong. We were given that gift.

In one of Kelly’s songs, People Like Us, she sings: 

“Hey everybody loses it
Everybody wants to throw it all away sometimes
And hey, yeah I know what you’re going through
Don’t let it get the best of you, you’ll make it out alive
Oh, people like us we’ve gotta stick together
Keep your head up, nothing lasts forever
Here’s to the damned to the lost and forgotten
It’s hard to get high when you’re living on the bottom”

We know the value of community and finding other people like us. So to all my chronically ill LGBTQ+ brothers and sisters, remember you are stronger than you think you are. You are brave, courageous and beautiful. You are the mighty.

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