Stephen Fratello

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 100^th 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.

Religion 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.

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.

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.

 

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.

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.

Join The Mighty community at http://www.themighty.com.

Thinking about going to the doctor creates stress and anxiety for me. Actually going can bring on a panic attack. This has given me a reputation with doctors and creates a problem for me. I am torn between disclosing my anxiety diagnosis and trying to hide it — albeit hard.

Often times, having an anxiety disorder gets you the label of being difficult, “crazy” and delusional. The doctors somehow trace every symptom, even a broken arm, back to your anxiety. It took me years to find a specialist who took me seriously and believed that some of my physical symptoms were not manifestations of anxiety, but had actual physical causes.

I am aware that anxiety does manifest itself in the body in unusual and surprising ways, but that shouldn’t be cause for neglect of the patient. Sometimes physical illnesses are overlooked and not treated properly because a patient has a mental illness.

Doctors need to understand the needs of the patient and accommodate them to the best of their ability because that is why they became a doctor — to help and to heal. Not create more damage and harm. Sometimes they need a reminder.

If you are a doctor who has a patient with anxiety or any other mental health condition, please consider the following:

Understand we are people. We need a little extra kindness and compassion.We are already nervous and anxious about being there. Try to do whatever you can to create a relaxing environment.

Listen to what we have to say. When you don’t take us seriously or brush us off, you make us feel even more isolated and alone. We feel that we may never find someone who understands us. All we want is relief. If I tell you my stomach is constantly bothering me, order a CT scan or an actual test. Don’t tell me to take more anxiety meds and to try to relax. Your job is to explore all the possibilities and while anxiety might be one of them, it is not ALL of them.

Reassure us that you heard us and understand us. Explain things to us in a way that we can easily understand and let us participate in our treatment. You may know medicine, but we know our bodies.

Understand that what you write down in our chart will follow us to other specialists and doctors. If you write you think that we are nuts, that is most likely what other doctors will believe, too. This will prevent us from getting the care that we really need.

The bottom line is that people with anxiety also get sick in their bodies. People with mental illnesses also get physically sick. We need proper care. We deserve it. Please don’t use a mental health diagnosis to avoid doing your job well.

A special thank you to the few, but great doctors out there who have taken me seriously and explored all the options.

Spirituality has always been a part of my life. I was raised Catholic and am thankful for that tradition, as it left me with many tools for life and discernment. It also has harmed me, but I won’t get into that in this post. This is about how I learned one simple phrase, using a spiritual tool, to help me during times of confusion. Maybe it will help you, too.

Years back, I went to see a spiritual director to talk about some of my concerns about life, God and suffering. She had recommended that I walk a labyrinth, which is basically a maze. It’s a form of walking meditation. There are many ways you can use a labyrinth, but the easiest way is to ask a question to God — assuming you believe in one. If not, you can ask your Higher Self or spirit guide or whatever you believe in for guidance. You enter with a question. That day my question was, “What am I supposed to do?”

As I walked the labyrinth, there were many stops and starts — much like living with a chronic illness. You are led in one direction, only to find you are being turned in a different one. Just when you think you are on course, another turn and another redirection. There are times when you think you are almost out of the woods only to find that you are back in the center of the circle again. I admit, it can be frustrating. You want to rush through. You want to get it over with. You want your answer. NOW.

What I heard in my mind was, “Just keep walking.” Just keep walking. Just. Keep. Walking.

Finally, I made it out. I kinda thought the whole thing was mostly stupid to be honest. When I relayed my sentiments to my spiritual director, she asked if any thoughts or ideas came to mind. I told her that I felt that if I just kept walking, eventually I would find my way out. She smiled and nodded.

Sometimes we are looking for something profound — some deep answer to life’s questions when the answer is just to keep walking. Keep walking or crawling if you have to. Keep walking even if it’s just to the bathroom. Just go to that one appointment. Just do that one thing to take care of yourself. Make that one phone call — that one text.

I still am in the labyrinth of life. I can’t say I made it out – yet. But I am walking. Let’s walk together.

 

 

 

Anyone who lives with a chronic health condition knows how frustrating it can be to deal with family and friends who either just don’t understand or flat out just don’t care.

Yes, it’s true that most people won’t understand something until they go through it themselves. This isn’t really an excuse for overt selfishness and total lack of compassion, though.

If you are a family member or friend of someone who suffers with a physical/mental illness or disability, here are some things you want to be mindful of. You might be engaging in some of these behaviors knowingly or unknowingly. Either way, it’s unhelpful and hurtful.

Expecting them to get over it. It absolutely does not work like that. Trust me. I promise you. Nobody “gets over” cancer. If they could, nobody would have cancer. Same thing.

Expecting them to be there for you for any problem you may have, but refuse to take the time to be there for them. This includes calling to ask how they are, asking if doctor appointments and tests went ok and asking them if they need to talk about what’s bothering them. It’s a two-way street. I’ve listened with empathy to stories of divorce, problems with children, sick parents, boyfriend problems, financial struggles, ect. Surely, you can give me the same consideration. Calling them to constantly complain about your problems while never acknowledging theirs is thoughtless and selfish.

Minimizing their struggles and health concerns. Speaking to them like their problems aren’t valid or making things into a competition will only make things worse for them and make them not like you. Which leads me to my next point…

Making illness and life situations into a contest. Contrary to what some may think, none of us are in the running for a medal or an award for who is the sickest. I don’t play that game and neither should anyone else. We are all fighting our individual battles and demons to the best of our ability. Don’t spend your time debating who has it worse. It’s insulting and it’s a waste of time.

Forgetting birthdays. This one sounds a little petty, but the truth is, birthdays can be lonely for people who have an invisible or chronic illness. Sending a card or text or calling can make a difference. Most of us have smartphones that remind us when someone comments on our Facebook status. Surely you can find a way to set a reminder to remember a loved one’s birthday.

Ignoring them. The worst thing you can do is pretend someone doesn’t exist. It’s the ultimate insult.

Blaming them for their illness. Most of us did not choose to be sick. We are most likely trying everything we can to get better. Medications can cause weight gain, fatigue and other health issues. Our illness alone is enough to wear us out. This can lead to, or worsen symptoms of depression and anxiety. It also increases feelings of isolation. Don’t blame us for something we cannot control. There are days where the fight is too hard and we need time off. This is not being weak. It’s called taking care of yourself.

Telling them it’s all in their head. This is basically the verbal equivalent to slapping or spitting in someone’s face. Just don’t do it – ever.

Don’t assume. This is a big one. Don’t assume because I am smiling or that I put on a brave voice and face, that all is well. Don’t assume that because I am having a good day and feeling well enough to engage more with life, that I’m cured. It’s called taking advantage of having a good day and trying to make the most of it while it lasts.

If you’re doing any of these things, please stop. If you aren’t sure if you are doing these things, print out this list and run it by the person. They will probably tell you if you are guilty of the above. They may even have some pieces of advice of their own to add. Listen and pay attention to what they have to say.

Thank you for listening.

Imagine every time you ate a meal, you had to deal with the possibility that what you were eating could make you very sick at best or possibly kill you at worst.

That’s what it’s like for many of us that live with food allergies.

I have been diagnosed with multiple food allergies, sensitivities and something called histamine intolerance. Histamine intolerance is a disorder in which your body cannot break down histamine properly, so you have to stick to eating foods that are low in histamines, otherwise, your body is overloaded with histamine and you become very ill.

Eating out is never really a possibility because you can’t really be sure how the food was prepared and if the waiter/waitress has taken your “food allergy ordering speech” seriously. Going to visit family or friends becomes an ordeal in which you have to have prepared meals and snacks on hand. And holidays can be extremely stressful having to cook all special foods for yourself. You have tell your host that it’s not personal and there is nothing wrong with their cooking. Sometimes they insist on making something for you that’s allergy friendly. The problem is, they really don’t know exactly how to prepare it and one innocent mistake could cause you to become violently ill. It’s all very anxiety producing.

Food allergies are a disability. There have been many times where I got sick and had to take high doses of Benadryl. I was left exhausted and “hung over” the next day, forcing me to cancel plans. It makes you unreliable. You never know how you will feel or how your body will react to the food you eat, even when you are taking the proper precautions to avoid your allergens.

I remember one occasion when I bought gluten free cookies. They were oatmeal raisin. Well, that day I found out the hard way that I am allergic to grapes. My mouth was on fire, I was dizzy and couldn’t breathe and I was red from head to toe, like I had gotten bad sunburn. My mother dialed 911 as I was on the verge of passing out. Next thing I know EMTs were injecting me with needles and I was in the hospital. All that for a fucking cookie!

Other allergies, like chemical sensitivities, allergies to dog/cat hair, allergies to perfumes, ect. —  they can make traveling a nightmare. Will someone be wearing heavy perfume on the flight? Will there be a dog on board? You can’t visit your friend at their house because she just got a cat, so you have to get a hotel room – and not just any hotel room. It has to have a kitchen so you can cook your meals.

These allergies affect every detail of our day-to-day living and everything must be planned in advance because eating is something you must do daily, so it’s pretty unavoidable.

Eating the wrong thing can cause severe digestive distress, nausea, painful bloating, vomiting, dizziness, rashes, shortness of breath, fast heartbeat and feeling you might pass out. Sounds like fun, right?

Food allergies are disabling and can really ruin a person’s life. If you know someone who has a food allergy or multiple allergies, please don’t make them feel like they are being dramatic, faking it or making it all up in their head. They are not trying to be difficult. They are just trying to stay well. It’s a horrible way to live. Show compassion and understanding.

For more information, please visit: https://www.foodallergy.org/about/faaalliance

My Christian faith has always been a big part of my life starting from when I was young. I was sent to Catholic school and was raised in a liberal, but faith-filled family. My faith has always been something I turned to during my dark moments with depression and physical illness.

I remember a time when I had taken a break from “formal church” and felt very isolated and disconnected. I started to seek out connection within faith communities. I thought it would help me feel better, but it did not. It had the opposite effect. I realized that many churches and their pastors are not equipped to deal with things like mental illness.

I approached a pastor from a local church and told him my story and asked if he would be open to letting me start a support group for people with mental illness. Not only did he tell me that he did not believe that I was depressed, he blew me off and shooed me away.

After I regrouped and got over my disappointment, I tried another church. This time I was looked at like I was crazy, as if mental illness wasn’t real or something that belonged in church.  I was given the run around from one person to the next who politely refused to engage in any sort of conversation. It was clearly not a priority to the leadership.

“One more time”, I thought. I figured this time I would blend in. I found another church. I showed up for healing services and liturgies. I even volunteered for a few ministries. At one point, a staff member asked me what I did for work. I said that I was not working and was on disability for anxiety and depression. He then proceeded to say, “Oh, I work with crazy people.” I was stunned. I could not believe what just happened. I was so angry, I went to the pastor and told him what happened. He told me, “Well, we just have to forgive people. The church is imperfect, you know.” I was shocked. I left this church and never went back.

Let me address the pastor’s point. Yes, the church is made up of human beings that are imperfect. Pastors are imperfect people who most likely are doing the best they can and they can’t be all things to all people. This does not excuse wrongdoing and turning a blind eye to injustices going on. This is not an excuse to not deal with issues that present themselves to you or to ignore the people in need right in front of your face. You have taken a vow to help these people. It is your obligation to educate yourself on what your congregation is going through — to address its needs. If you claim to follow Christ, you have to at least try to act like it.

Churches need to comb the pews, get to know the people that attend there, not just the mentally ill, but everyone. What are their needs? Their stories? Are they chronically ill? Can you start a ministry, even a small one, to help these people? If you can’t, at least be understanding, compassionate and listen. Let them know they are heard and welcomed. It’s the Christian thing to do.