Illness Saved My Sex Life

Rachel and husband on her wedding day...
Rachel and husband on her wedding day…

I cannot remember who found “who” first. Rachel Meeks and I have exchanged emails and virtual “high fives” for a couple of years now. She is the talented and witty author/owner of “Do I Look Sick?”. You can check out her blog here: http://doilooksick.com/  Rachel has a knack for telling things like it really is. Folks with invisible illness and disability have trouble articulating what it is like to live “this way”. Rachel doesn’t have that problem and welcomes dialogue and comments on her blog. Recently, SEX was discussed here at Hearing Elmo. Even folks without disability or invisible illness shy away from the topic. Not us. It is Rachel’s – and my own – hope, that by openly talking about this topic, people may discover they are not alone and that there are others who deal with the same issues. Hearing Elmo, welcomes Rachel as a guest author this week!

Just after I got engaged to my high school sweetheart, I was diagnosed with endometriosis. All chronic illness has an effect on sex, but endo especially so – it’s a chronic pain condition in which the lining of the uterus ends up outside the uterus, causing intense pain centered around the uterine area – AKA all your sexy bits are the parts of you that are “sick” and hurting. That’s not really something you want to tell someone who thought they were marrying a…to be frank, normal person. Sex isn’t everything in a relationship, but it is a lot – especially to men. I’m not saying that to be sexist or anything, I just mean that there’s scientific proof that men have a greater physical need for sex, and that their minds are more geared towards sex romantically speaking. The way that long talks and thoughtful gifts say “I love you” to a woman is the way that sex says “I love you” to a man.

That’s what I’ve come to know after almost four years of marriage. But when I was a 19 year old fiance, I had a very different idea of the role sex plays in a relationship. In my mind, sex was like, the second most important thing just under love. And I had grown up believing the stereotype that men enjoy sex more than women, and that it was mostly an act of giving. That’s a nice fluffy way of saying I didn’t know anything about it because I didn’t think I was supposed to. I didn’t know what I liked or didn’t like sexually, I wasn’t very familiar with my own anatomy, and sex was actually even embarrassing just to think about, much less talk about. So now, I wasn’t faced with talking about sex – no, it was worse. I was going to have to talk to the one person who I really desperately wanted to like me and only know the best things about me, and explain things I barely understood. I’d have to explain the gross stuff that makes up my period was all over my gross organs. I’d have to use the word “uterus.” I was embarrassed enough to die. Luckily, he really loves me and never had a thought of calling off the wedding – even with a foreboding sexual forecast and the possibility of fertility problems down the line.

Rachel 2

“Coming out” to him about my condition was a pretty good indicator of how our sex life was going to be, even if I never had endo. I’ll be blunt – sex was awkward for us. We had passion and desire but we also had totally unrealistic expectations of TV sex that’s always perfect. We both really wanted to have that wordless, passionate sex that you see in movies. Without any feedback or communication, neither of us was getting a lot out of our sexual experiences. They were nice. They were just ok. They were….very odd. So we thought we must just be bad at it. It also didn’t help when it was extremely painful because of endo. We both felt like such losers. You never hear about this kind of thing. Couples get married and you just assume that because they’re in love, sex is smooth sailing. It’s actually really complicated, and I wish the world was less hush hush about it. At the very least, I wish things were open enough that we would have somehow known we weren’t the only ones.

After we became disillusioned about magical movie sex, we got bitter and mean. We wanted to have sex, but I was always hurting and we didn’t know how to talk about it so usually when we’d try, it would turn into a fight. What’s interesting is that when you get angry, you also get honest.

After our stormy stint of fighting over sex, we went through a dry spell. We lost the anger, but kept the honesty. I started talking to him more about endo and even bringing him to the OBGYN with me. We’ve always been best friends who could talk about anything – except sex. Once we started talking about endo, we broke down the last barrier between us. We became closer than ever. And we brought that talking to bed with us. We let each other know what feels good and what hurts. We give a heads up when we’re going to change positions or we want to try something new. We actually tell each other what we want and what we like. If I didn’t have endo and we didn’t have to go to the hospital and I didn’t need his help, I might never have opened up and talked with him like this. Now that he has a chance to fully understand my disease, he can help me with medical decisions too. But most importantly, we can both have a real sex life now – not only a fulfilling one physically, but also emotionally.

Endo sucks, and it sure makes sex a challenge. But I can also look at it as an opportunity for us to grow closer. When it feels like your illness is in the way of intimacy, try to see the way around it. It may just be better than your original plans.

Rachel Meeks

Do I Look Sick?

————

Denise Portis

Hearing Elmo

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Post-traumatic Growth (Part 2)

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Post-traumatic growth. If you missed part 1 of this series, click HERE for that if you wish. In the first post we looked at what can cause post-traumatic growth, and what changes might occur in our lives as a result of the growth.

This week, however, I want to address the WHY behind growth. Have you ever wondered why some people come out on the other side of trauma a much better person? Why do some people give up, while others thrive? Is it something within the person themselves, or is it the environment they are lucky (or unlucky) enough to be in post-trauma? Does personality style have something to do with it? What decisions did the person make to get them through the worst of it? What was the time table of those decisions? Is there a magic formula? (Would you like to participate in a survey? It is very short, confidential, and your “voice” will be used in research about post-traumatic growth! Click HERE and scroll to the bottom of the page for the link about the short survey)

These are all important questions. These important questions are difficult to answer, however. In all the years I’ve thought about these questions and other related “survival” issues, I believe little can be assumed and the variables are infinite. There are, however, a few key points that I think are valid. You may not agree with me and that is OK. After all, this is not a scientific analysis and I only have personal experience and the testimony of others to generate my list of probable reasons some people experience growth. So here we go! 🙂

Taking One Day at a Time

One thing I have noticed about people who experience growth, post-trauma, is that they do not start out with long-term plans. Especially in the beginning – you may be in survival mode. You go to bed each night with the sense of, “Whew. The day is over. I made it“. There is not any fanfare or celebration of the fact, it is simply what IS. You survived.

In that day-to-day survival you may have drawn on specific helps that for YOU, allowed you to make it through that day. It may be faith, a supportive person or persons, a mentor, a counselor, a cause or purpose… love. It may even be things that some people define as negative: anger, stubbornness, revenge, or even hate. By themselves one asks how can something so ugly be used to help you survive? These things may be inter-woven into your thoughts and feelings and played a part in your survival for that day. Positive or negative, it isn’t one specific, “magical” formula. I have met people from all walks of life with different supports in their life, some of whom have grown post-trauma and some who have given up.

For some, enough time has gone by that you may feel like you can begin to look and plan for further down life’s path. Just do not be surprised if something happens and you find yourself in survival mode again. It could be triggered by something that seems so irrelevant and inconspicuous. Why is this true?

I think it is because post-traumatic growth is a PROCESS not an outcome. Those who grow do so because they continue to “take one day at a time”. They recognize there will be setbacks. They recognize there isn’t a prize or even a finish line. They know and realize that life after trauma may include days in which you are only able to trudge through.

Supports

I have met a few people who insist that they made it through a traumatic experience and grew from it all on their own. They found the wherewithal inside themselves and pushed through the crisis. However, I believe that even those whose “claim to fame” is that they are completely independent miss the point. Someone, somewhere had an impact on who they are as a person to be the kind of survivor who could dig deep and push themselves. It may not be someone who stood right next to you while you began your “life after trauma”. It may be that it was a person or persons who impacted your life years ago.

For many, however, it is a current support system. You do not have to be married or in love. You don’t have to be a person of faith. You don’t have to have a BFF. You do not have to have a dog (grin). Sure… these things can be used as supports, but they aren’t necessary. I know this because I’ve met far to many people who have experienced post-traumatic growth who do not have these things. The key is that they reached out to something or someone.

The danger of experiencing the worst life has to offer is isolation. Not solitude – something we all need from time to time to grow our souls – but isolation is the enemy of those seeking to grow post-trauma. Some folks have tried to tell me that they isolated themselves to survive. It hurt to much to interact with others “after”. If you isolate yourself long-term you are not going to make it. I’m not trying to scare you. We are human beings and at our very core we need other people. When you isolate yourself, another cannot find you to help. Those YOU were meant to help are also out of reach. The way to avoid isolation is to reach out. Join a support group. Go see a counselor. Write. You have to let others know you need them.

“And in this curious state I had the realization, at the moment of seeing that stranger there, that I was a person like everybody else. That I was known by my actions and words, that my internal universe was unavailable for inspection by others. They didn’t know. They didn’t know, because I never told them.” Kim Stanley Robinson.

An important side note? If you reach out to someone who needed you immediately after a traumatic event – a life-altering illness or diagnosis, the death of a loved one, victimization, violence, catastrophic loss – don’t forget to continue to check in with them FOR THE REST OF THEIR LIVES. Remember. Post-traumatic growth is a process, not an outcome. They remember the anniversary of the death of their loved one. They remember the accident that changed their life forever. They still have nightmares. They still need you. Continue to be there for them. When something traumatic happens to you (when – not if), you will need people who walk along side of you until the end as well.

Finding a Purpose

No worries. I’m not going to spout off an over-used platitude about lemons and lemonade. When we experience something traumatic we become an expert – at times an unwilling one. No one understands you like YOU do. Some people who experience traumatic events, collaborate with others and see significant changes in laws, supports, or after-care programs. They have the passion to see it through and to demand change.

Others, however, may not experience growth in such a measurable way. Yet, they too make a difference. There is a person in my life who has advanced MS. She writes me about three times a year. Her letters are written in a huge font because her eyesight is so poor now. I believe it very likely takes her hours to write me one newsy email. For a long time she had no idea what those emails meant to me. And so I told her. She is a transparent, significant human being who just so happens to excel in encouragement. She has impacted my life. I tell her so. She doesn’t get out much and often isn’t healthy enough for visitors. But she can use her computer on a good day – and she reaches out. She chooses people she thinks she can encourage and writes them. She may have to nap the rest of the day just to recover. She has a purpose. She matters and what she does matters.

It can be big or small. It can be something related to what you went through yourself, or a path that simply has you helping others that may be hurting in a different way. Find something or someone to be involved with and do it with passion and a purpose. It is often that cause or purpose that sees you through those days you find yourself back in survival mode…

… because it is a process – not an outcome.

You, too – CAN

I tried to grow tomato plants one summer. After only 4-5 weeks, the plants began to die and I noticed a smutty, yucky, kind of growth on the leaves, stems, and fruit. Disgusted, I pulled them all up and soothed my hankerin’ for ‘maters by visiting the produce department and local farmer’s markets. The next summer I carefully tended to new “baby” plants and tried again. In less time, the fungus-like growth was back and I was mad – and hungry for tomatoes.

I had to empty out the large planters and scrub them down. I had to buy new top soil. I had to do – what I SHOULD HAVE DONE the first time ’round. By the early Fall, I finally had fresh tomatoes from my own backyard.

You may not be experiencing growth because you have isolated yourself. Perhaps you tried – too soon – to make long-term plans. Maybe you didn’t immerse yourself in a cause to fulfill that need we all have to have a PURPOSE. Maybe you aren’t growing because you need to transplant yourself.

Are you surrounding by negative people? Do people tell you that you CAN’T do that NOW? Sometimes well-meaning people promote fungus-like growth. They destroy our fruit. We need to set boundaries and show them we CAN. We need to find people who believe that we CAN.

I welcome your input and feedback.

Denise Portis

© 2014 Personal Hearing Loss Journal

Post-traumatic Growth (Part 1)

team chatter 2

Nope.

That isn’t a typo. You have probably read articles or news stories about post-traumatic STRESS (or PTSD), but did you know that post-traumatic growth is a related and now often studied psychological topic? There is even a new field called psychotraumatology. Try saying that 5 times really fast…

At Hearing Elmo, I do my best to present topics related to invisible illness, disability, or chronic conditions. Guest writers are encouraged to have some connection to one of those topics.

*SIDE NOTE* Hearing Elmo welcomes guest writers any time! Email me for more information at denise.portis@gmail.com with “Hearing Elmo” in the subject line.

Chloe after 2013 re-certification

As you know, Fidos For Freedom, Inc. (FFF), is a big part of my life. My service dog, Chloe, comes from FFF but I also stay connected through weekly trainings and volunteering for various jobs each year. The people there have become “family” to me and I have learned so much about the disability community through my connections at this wonderful organization. Something I have observed, is that even if you’ve taken the step to train and be matched with a service dog to mitigate your disability or illness – something that can take “guts” as it can make the invisible, very visible – not everyone responds to “bad things” the same way. Many times it is simply because the person has not adjusted yet.

As my dissertation looms in my very near future, I am already thinkin’ about…

What am I gonna do? (No worries. I *can* use a scholarly voice when the environment calls for it <big grin>)

But back to my original topic! How do people come out on the other side of something traumatic, and find that they’ve grown? Do they have something in common or is the outcome as individual as the process? How do you survive and be BETTER and not BITTER?

These questions are on my mind. A LOT.

I receive hundreds of emails from readers each year and try to respond to each personally. I’m always tickled that a common question seems to be, “How do you have your ‘stuff’ all together so well? I’m floundering here!” I am always quick to respond with an honest evaluation about my own life “after disability”. Folks are surprised. I don’t try to sugar-coat how I’m doing in my own life. I deal with the same things you do:

Depression

Anxiety

Suicidal ideation

Pessimism

The trick is not to stay there. Sometimes it can be worked through on your own. Sometimes it cannot. Sometimes we need help. So how do some people come out on the other side of something traumatic – better? How do people grow in spite of experiencing something devastating?

This is going to be a “two-fer” post. Meaning: I can’t address everything I want to cover in one post (smile). For this first part I want to cover what kinds of things can cause PTG (post-traumatic growth), and clearly define what it is. Next week we’ll look at some other related issues.

What causes Post-Traumatic Growth?

Traumatic experiences.

Kinda anti-climatic, huh?

But for OUR population – those who live with disability, invisible illness, or chronic health conditions – what is a traumatic experience? It can include:

disability

invisible illness

chronic physical or mental health conditions

devastating diagnosis

sexual abuse

violence and victimization

divorce or loss of an intimate relationship

death of a loved one

war

poverty

Basically – anything that can cause stress. Not the run-of-the-mill kind of stress. You know the kinds of stress like, a “bad hair day”, my cat threw-up in my favorite shoes, I locked myself out of the house, or I ate bad sushi. We’re talkin’ the kind of stress that produces trauma. It may be specific to YOU. For example, I have met people who have heard me speak on various topics and have come up and shared that they “don’t get why hearing loss would be a reason to develop depression“. They have hearing loss and they have coped just fine. Variables, my friends… variables. Personality, background, resilience, support, worldview, gender, economics – the list goes on an on. You may respond to a life event completely different than someone else. That’s OK. This is why you hear me encourage folks to reach out and SHARE. Your experiences may help another. You won’t know if you don’t talk about it.

What is Post-Traumatic Growth?

PTG is actually something that came from a branch of Psychology called – Positive Psychology. There are scales and inventories available to see where you rate in PTG. I first started reading about it back when my cochlear implant was first activated. “Hearing again” was a tough journey. I stumbled across the term coined by Drs. Calhoun and Tedeschi. According to them,

What is posttraumatic growth? It is positive change experienced as a result of the struggle with a major life crisis or a traumatic event” (Posttraumatic Growth Research Group, 2014, para. 1).

Their research centers around 5 changes that occur in an individual, post-trauma. These include:

1. New opportunities

2. Change in relationships

3. Increased sense of one’s own strength

4. Greater appreciation for life in general

5. Spiritual or religious domain (Posttraumatic Growth Research Group, 2014)

Have you been diagnosed with a super scary, perhaps life-changing diagnosis?

Have you acquired a disability?

Were you injured, permanently changing the way you live life?

Have you experienced something that left scars (physical, mental, emotional)?

You can experience growth. It may not happen overnight. It may mean that you experience tremendous loss, fear, and grief at first. You may blow it. A LOT. However, I don’t know about you, but I experience a sense of hope knowing that something good can “come of this”.

Comment here or send me a confidential email. I’d like to know how you’ve experienced GROWTH. There is no prerequisite measure. Maybe it wasn’t a lot of growth. Maybe you experienced “three steps forward – two steps back” throughout the process. I’d love to hear from you!

Denise Portis

© 2014 Personal Hearing Loss Journal

Posttraumatic Growth Research Group. (2014). What is PTG? Retrieved January 2, 2014, from http://ptgi.uncc.edu/what-is-ptg/