Thoughtless and Unhelpful Things Family/Friends Do When Dealing With Your Chronic Illness

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.

Food Allergies Are A Disability

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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

Why Churches Need To Educate Themselves On Mental Health

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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.

The Media Can Be Misleading About Mental Illness Recovery

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Anyone who sees a loved one depressed, anxious or manic, wants them to seek help and get better. It’s understandable. Who wouldn’t?

There are also tons of well-meaning phrases that people in the media throw at you. “You’re not alone.” “Help is out there.” “You don’t have to live like this.” “Reach out.” While all of these statements have truth to them and are more than likely said from a place of good intentions, they may not be so helpful.

Here’s why:

First, when I was diagnosed with depression and anxiety it took me many months to find a decent doctor. A lot of doctors out there do not listen to you, put you in a box and love to over-prescribe pills. In my case, I cannot take most medications as the side effects are too severe for me to handle. The depression is easier to cope with than the side effects. This has left me seeking alternative treatments like acupuncture, meditation and dietary changes. Not every doctor is open to this. You have to do what’s best for you and it may not always be embraced by the medical community.

Second, the same is true for therapists. I was treated awful by one therapist. He said very inappropriate things to me which I will not get into here, but let’s just say that he probably should have lost his license. Aside from that, finding the right therapist takes time. It’s almost like dating. You have to find one that you click with, who understands your journey and is willing to work WITH you.

Third, taking a pill and going to therapy doesn’t always mean that, “poof!”– you are now magically all better. For many of us with mental illness, it is a series of stops and starts. You try one med and it works…then it doesn’t. You find one good doctor and then then he moves. You try a new med and a new doctor and both end up being a bust. You’re back to square one. You research more treatments. You read books. You join support groups. You learn. You get better and then sometimes worse. And then better again.

Fourth, family members and friends don’t always understand your issues and either don’t take the time to because they either don’t care or they just don’t know how to be there for you. So relationships end up being a roller-coaster and are subject to strain.

While all of this may sound really negative, it’s not meant to. It’s meant to combat the myth that we hear so often when we encourage people to seek help for their mental health. That myth being that once you reach out, go to a therapist and state your feelings–then magically, all will be well. While it’s possible to go to one therapist and one doctor and get one pill that will make you feel almost 100 percent better, that is often not the reality for most people. It’s a journey. It’s YOUR individual journey. I can’t say it will be easy. It’s worth taking, though. Seek answers. Be your own advocate and keep going. When you can’t keep going, take a break. Let it all go for a while. Then start again.

Coming Out: Why More Men Need to Come Out as Chronically Ill

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When I first was diagnosed as having an anxiety disorder and depression, I searched a lot of sites for help and support. There was one thing that was blatantly obvious. I noticed that men were largely absent from the conversation. Even in the support groups that I attended, men were scarce and the ones that did show up did not really participate. It left me wondering…why don’t men speak out more when it comes to their health issues?

Years later I would develop digestive problems and food allergies. I once again combed the internet looking for support and answers. I found great groups and Facebook pages that offered some help, but once again, no men.

I would read article after article – all written by women and feel so relieved and inspired – that I wasn’t alone in this world of doctors, diseases and medical problems. But then I started to think again, “Where are all the men telling their story?” I knew I couldn’t be the only man struggling with mental and physical issues.

I think our society stigmatizes men more. We are supposed to be tough, strong and resilient. I’m not sure men want to talk about their issues because maybe society programs us not to. We are supposed to just power through and not complain and bitch. It’s seen as pathetic.

Nobody likes to admit they have a problem or health issue. It’s not fun, but when it comes to finding answers and seeking help, why are men less likely?

I guess there are many statistics I could site here, but there is more to it than that. I want to encourage men to come out of the so-called, “chronically ill closet.”

I know for me, I have heard all the lame and hurtful remarks people make. “You look fine.” “You’re a tough guy!” “You can’t feel that bad.” “Toughen up and try harder!” “It’s in your head.”

Women hear these remarks all the time, too, but for some reason it’s implicit that men are not supposed to be ill or live with impairments. Or if they do, they should be able to just RISE ABOVE them and carry on like all is well. As a man, I feel frustrated by this – almost discriminated against.

Today, it seems it’s a lot easier to come out as gay than to come out as having an invisible illness. If I tell someone that I am gay, it’s almost no big deal. “Good for you”, they say. “Live your truth!” “It doesn’t matter, as long as you find happiness,” says another.

So, for all my fellow men who are chronically ill out there –I know that what you want people to know is that it doesn’t matter if they understand what it means to have an invisible illness or not. In fact, they probably never will unless it happens to them. What we care about – what’s most important to us, is that we are treated with dignity and respect. Yes, we are men, but firstly we are human beings. We are sick. We need to reach out to those safe people that understand. I am with you. I support you and I encourage you to come out and tell your story. Together we can help support one another and end the stigma.

Invisible Illness Awareness Week

invisibleillnessawarenessThis past week was Invisible Illness Awareness Week. Invisible illnesses are illness that impact a person’s life, but cannot be seen physically. They are “invisible” to the naked eye.

One invisible illness is anxiety. Anxiety comes with a whole host of symptoms and emotions. One of the worst feelings is not fear, but regret — the feeling that you just aren’t doing enough to achieve your goals. The sense that life has gotten away from you. That you’re a failure. That you’re lost and can’t get on a solid course.

I relate to feeling lost because my illnesses (anxiety, depression and digestive) have prevented me from doing things people my age (34) are doing and from achieving the goals and dreams I had for myself. I don’t find overly positive ideals and motivational speeches helpful any longer when it comes to combating these demons. I think we need to hold on to hope for a better tomorrow and never give up believing things can improve, but it’s also important to live in the present moment and take each day as it comes and to keep repeating to yourself that you are doing your very best, that this illness really isn’t your fault. Don’t compare yourself to everyone else…you are not everyone else and you aren’t living their life. At the same time other people are not you and are not facing what you have to face.

For me, going to the supermarket is a major ordeal some days. Other people work 2 jobs, go to the supermarket and take care of their kids, while at the same time, managing to achieve their goals. I am not them and they are not me -I keep reminding myself.

This week my goal was to go easy on myself. My dream this week was to just feel a little bit better than I did last week. And maybe help someone feel a bit better too. And guess what? All my dreams and goals came true for this week. Maybe next week I will dream a bigger dream. But that’s next week. Here I am today. And it’s enough.

https://www.facebook.com/InvisibleIllnessWeek/?fref=ts

Finding God in Gay

Learning to find God in all things can be tricky, but it can get even more daunting to find God in the darkness of rejection, discrimination and prejudice.

Like many other gay men, I left the Catholic Church on a quest to find God and be the man He created me to be. It became increasingly clear that I could not do that and remain in a place that told me there was something wrong with the way that God made me. I was no longer accepted in my own home. I do want to make it clear that there are many wonderful people in the church who have shown me God’s love and acceptance. I was fortunate enough to find a supportive Catholic community near my home and I count it as a blessing, because such a community is truly uncommon today.

I didn’t have to grapple with my gay orientation for too long. I was accepting of who I was from the beginning, which was a blessing and a grace in many ways, though I did feel the sting of rejection from a place that was supposed to be my home. I consider my brothers and sisters who have not been as fortunate and I feel compassion for those men and women who struggle with self-hatred and condemn themselves to a life of secrecy, those who are constantly bombarded with messages telling them they are freaks. I think of the kids being bullied at school who then go to mass with their parents and hear anti-gay remarks. I wonder how many teenagers who kill themselves also went to church with their parents and heard those things. And mostly, I wonder where God is in the midst of all this.

“You are fine the way I made you”
I constantly struggle with the answer to that question, but I do know that who God made me to be has been a gift. I have learned that love has many faces and styles. I’ll never forget watching Chely Wright—the country singer who came out—describe her experience. She said she remembered praying to God to make her straight when she heard a still small voice saying, “You are fine the way I made you. Proceed as you are.” Her words resonated deep within me. That is a powerful message for everyone, but especially today’s youth.

We find God in the diversity of creation and we find God in love – whatever form that takes. We can also find God when we are rejected and abandoned. Jesus was rejected because most narrow-minded people have little capacity to receive the all-encompassing love of Christ. Jesus preached of loving your neighbor and accepting everyone as brother and sister. Sadly, many Pharisees found this loving message absolutely appalling. Even more, Jesus made the human sacred. He blessed diversity. He associated with all types of people – some of whom were of questionable character.

Whenever we are being our authentic true selves—the selves that God created us to be—we will meet some level of rejection. But we can find God in the love within us and in communities that accept and affirm us. We can find God in people like Chely Wright who was a voice for all gay people who have no voice. God can be found in that still, small voice, “You are fine the way I made you, proceed as you are.”

The voice of Christ
And we also find God in hope. Hope for the future. That acceptance and change will happen. It already is. There are many voices speaking out in favor of that change. I believe there is hope that we will come together as one big human family and “love one another as Christ has loved us.” I pray to be a part of that change and I pray that together we can play a part in helping to end teen suicide over one’s sexual orientation. I pray that all my brothers and sisters would know that they are loved and created in the image of God who has created diversity when it comes to love.

I believe that it will be the small communities that meet outside of the institutional church that will make the difference in this world; the lay people and the clergy who actually follow Christ that will make a difference by their efforts and sacrifices, people like Jeanine Grammick and the late Mychal Judge and many others who are standing up against injustice. It’s the quiet nuns that live in obscurity taking care of AIDS patients and the small welcoming communities who worship in the seclusion of their own home who are making the difference. The men and women who have the courage to be who they are in the face of rejection and ridicule and those who minister to the ones who cannot be themselves — they show me the Kingdom of God. These people are the true church and the face of Christ for me.

*This post originally appeared on the God In All Things blog. It can be found @ http://godinallthings.com/2012/10/11/finding-god-in-gay/