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.

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.