Intimacy and Invisible Illness

sexy

I had numerous emails come in just during the last week, asking me to reconsider letting readers share their own personal stories about intimacy. We have enough, I think it makes a “good read”. Why I think it is really special though, is because it is a topic that is important, yet one that can be difficult to talk about with others. As always, I invite you to write for Hearing Elmo if you have issues, topics, or concerns that mean something to YOU. A person who lives with invisible or chronic illness, or love someone who does. Just email me at denise.portis@gmail.com to find out how. I don’t want to take away from the message and influence of this post. So I’ll shut up now. BIG GRIN! Here are a few of your stories – in your own words. I’ve made only minor spelling corrections and omitted only minor sections (with notice to the writer) for things that were maybe a little too detailed. 🙂

Intimacy and “Me”

Life happens with or without a hearing loss. Most intimacy doesn’t have anything to do with our hearing loss, but yes, hearing loss can impact how we interact with others.

I longed to have more close friends when I was in junior high and high school. The deal breaker was not that I giggled a little too much, or was a little shy at times. The deal breaker was that I was the odd girl out. I didn’t get included because I couldn’t hear well enough to be like everyone else. I didn’t get the printed memo on social activities. Maybe I was blissfully ignorant, because I ended up with a close dedicated relationship with someone I truly love, and who loves me for who I am.

I do have a few intimate friendships (non-sexual) with just a few friends. I get support that I need from a few individuals, and then I have a lot of acquaintances that I can talk to. And, more importantly, I do get out and participate in activities that I’m interested in, and I am connected to other people.

What I really miss? Is that I don’t have a close friend to call up and do something with on the spur of the moment. I don’t have a girlfriend that I talk to every day, and that asks if I want to grab lunch, or go shopping. I don’t get invited to parties, and I’m not asked over to the neighbor’s house have a drink or sit and chat. I missed out somehow, and I’m not quite sure how to correct that. Is it hearing loss? Or is it personality?

Maybe it’s confidence. I’ve gained confidence in some areas, but maybe I’m still hesitant when I should be reaching out to others. Is it hearing loss? Am I afraid of what others will think of me? Or should I embrace that perhaps it’s a little bit of hearing loss, and a lot of who I am as a person?

One thing I do know, is that I have to make things happen for myself, I can’t wait for the world to come and get me. Hearing Loss or not.

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Intimacy is affected in my relationship because I’m always fatigued and in the bed resting a lot. My illness also causes pain which comes and goes. Since I’m fatigued and in pain a lot, there are many times that I don’t feel like being intimate. My partner lets me rest and after enough times being told no, he stopped along. This quickly turned into almost no intimacy at all.

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My partner and I are intimate despite her disabilities. I guess if we have problems it is that both of us wish we could be more spontaneous, but it just isn’t possible. Because of the issues she deals with, I know it has to be a “good day” in addition to it needing to be a low stress day. She is fast getting to where she will need to stop working full-time. We can’t afford for her to go through the lengthy process of SSDI but working part-time would be in her best interests. I think maybe things can be more spontaneous after she is able to rest more. A 40 hour a week job for some kinds of disabilities is really difficult. It makes all other parts of life shift way down the list of priorities. I love her. If the shoe were on the other foot I know she would be just as supportive. So the spontaneity I do miss, but one does what one must to make sure both are getting their needs met. There is so much more to love than the physical anyway. At least that is what we believe.

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As two adults with hearing loss, my husband and I are used to intimate relations with limited sound. That never deterred us; I would say we have a very close, loving relationship. Hearing loss has never affected us much in that area, except that there’s not a lot of ‘giving directions’ happening in our lovemaking since neither of us would hear it! We rely more on observing each other physically than listening for sounds of pleasure, for instance.

For me, the hardest thing was going completely deaf. Lovemaking feels more isolated to me now, especially since we are ‘bedtime, after lights-out’ people. I’m extremely nearsighted and, of course, don’t wear my cochlear implants to bed. Without them, I’m 100% profoundly deaf. So in the dark of night, I can’t hear (or lip read) and I can barely see. The absence of sound is very pronounced to me in that circumstance; even though I didn’t have much hearing before, I had enough to make me feel more connected during lovemaking and less isolated. This bothers me more than I realized it would, but unless we get busy with all the lights on (not happening!) or only if I have my CIs on (very, very rare) then it’s just something I have to get used to.

I miss the closeness of lying in bed, at bedtime, and chatting with my husband. There is no casual conversation for us – I have to actively face him and lip read, and make sure the lights are bright. So now we lie next to each other and read in silence. It’s frustrating to me that I can’t just make casual comments to him like I used to, and have that ease of conversation. It’s now a huge chore because of my deafness.

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I became deaf later in life, I am now 21 but I also have Chronic Regional Pain Syndrome. Intimacy and relationships are difficult regardless of ability sometimes however illness or invisible disabilities further complicate matters. My boyfriend has been wonderful, from learning signed English (ASL confused the poor man) to supporting my decision for a hearing/service dog, but we have our problems too. He sometimes forgets that I cannot hear him and will get exasperated at having to repeat himself, or he may become slightly terse when reiterating what others have said. At the end of the day it’s our open and honest communication that allows us to continue the relationship. Sometimes the little things he says maybe helping me answer the phone or telling me I’m beautiful no matter what, and the not so little things like our date nights or the days I cannot walk, where he me to my wheelchair or through the house, to reminding people at church that I cannot hear and that at certain times even small touches are excruciatingly painful. Our lives are not perfect but no ones is, we each have our faults, but our love lets us see beyond them.

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I have multiple disabilities and have been married for over 25 years. My husband and I are no longer intimate. Some of it is his fault (high blood pressure meds and failure to discuss options with the doctor), and some of it is mine. I know you, Hearing Elmo, from a Meniere’s forum. For many of us even laying flat is impossible. Being held, or other things that lead up to intimacy is just impossible without passing out or feeling so disoriented you want to throw up. That isn’t exactly helpful to a male ego. I’ve said “not now” so often it is “not ever”. We love each other. We just aren’t loving in that way now. We seem to have reached a point where there is an unspoken agreement that this is the way it is. I’m sure it isn’t healthy on our relationship, but it is where we are right now.

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First a little about my chronic illnesses:

Like you I have bilateral Meniere’s, I have a cochlear implant, and will be getting a second next month. I have pretty much constant disequilibrium and use a walker to get around. I also have chronic migraines (most days I have a headache on the scale of 5 or above). I have asthma that has gotten out of control, so we are working to get that better. I have Idiopathic Intracranial Hypertension (high cerebral spinal fluid), this can cause severe headaches when exercising. But the two things that often inhibit physical intimacy the most is chronic hip and pelvic pain.

My husband and I used to have a very hard time showing intimacy. Mostly this was my fault, I was paralyzed by fear of pain. He was trying hard not to make me feel that I needed to do more than I was comfortable with so he would not flirt or do anything like that. This made me feel more uncomfortable.

After we started going to therapy because I was having a hard time dealing with the loss of my independence, we started communicating better. We’ve always communicated well, but when I started feeling like I was a burden it was hard to hear what was being said….I hope that makes sense. And my husband was having a hard time knowing how to voice things he was feeling. We did not show our intimacy for fear of hurting each other, or for fear things would get started and I would end up having to stop things because of pain or dizziness.

We began getting even closer than before, (we’ve had a great marriage, so it amazed me when things started to get even better.) We talked about everything. Communication that is understood has been so important to our marriage. We’ve always communicated, but we didn’t always make sure the other understood what was being said, we simply assumed it was.

We are now very intimate. Not always sexual, but always loving. It was important for my husband to know that I still wanted a sexual relationship with him, I was just scared. It was important for us to understand that if something happened because of my illnesses that caused us not to be able to follow through, it didn’t mean I was less of a woman, or he wasn’t doing something wrong. It was also important for me to know that he still found me sexually attractive, even at those times when I couldn’t possibly think of doing more than cuddling. Every day we say little sexy things to each other. Like when he’s getting dressed I’ll make little remarks to let him know how sexy he is. He tells me these things all the time, or we reach out and touch each other suggestively. We’ll joke telling the other they are a tease, then answer with, “No it’s a promise”. It’s so important to know that even though our sexual relationship has changed we still find each other as sexy as we ever have. A little flirting here, a little touch there….it all means so much.

When my husband looks and me and tells me that it amazes him that he is still so attracted to me even after all these years, it makes my heart swell…and I know that he is not thinking of my illnesses, or the weight I’ve gained because of the medication, he doesn’t see that, he sees me…and I love his so much for it, and it makes me want to try to have sexual relations more often. Our actual sexual intimacy doesn’t happen as often as either of us would like, but we both make each other feel desired every day, and that has kept our marriage fresh, and sexy.

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I served USArmy and was discharged in 2010. I am 26 and do not believe I will ever be in a relationship again. I have scars, both inside and out. This subject is important so I’m glad we have a chance to talk about it. PTSD rules my life. Sometimes the scars on the inside are worse than outside scars. I cannot imagine being intimate with someone. Doctors tell me I need more time. I don’t know how time can help since I even have anxiety even in my sleep. I look in the mirror and can’t love myself. How could I hope for someone else to love me? For now I am working on relationships – the friendship kind. Even that is hard. There is so much broken. Maybe for some of us intimacy is hoping for too much.

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I have a hearing loss and am 23 years old. My hearing loss has become a lot worse in the last 5 years. I don’t date. I’m reasonably attractive and work out to try and stay in shape. I work full-time and have about 4 semesters of school left. So I am in a position that I see a lot of people some of who I’m attracted too. Some are attracted to me too, but once they learn how hard it is to talk to me they stop trying to get to know me that way. At work, I’m able to speech read and write notes to clarify. I follow-up with email a lot after our team meets. I guess it is too many hurdles to jump over to date me. Right now I’m content with finishing school and then seeing if I can get into grad school fairly quickly. My goals keep me going right now. But someday I want to have a family. I would make a great mom. I cannot imagine being intimate with someone. I can’t even communicate on a date in a dark theater! So for now I just keep plugging away reaching personal goals. I do worry that a goal of being a wife and mother may never happen, however. Hopefully I can meet someone who can see past the hearing loss. I’m not contagious!

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I have MS and I am a male. I always liked to be the odd ball. My wife left me about two years after my diagnosis. I work from home right now and have a service dog. I have my routine but don’t actually get out there and mingle much if you know what I mean. I think maybe I should go back to church. I stopped after my wife left me because I was pretty peeved at God. My brothers tell me I would probably be more likely to meet people at church to look past the MS and be willing to be my friend. Why does that make me sad?

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I am in my 30’s and have a great sex life I suppose. I date a lot and enjoy the company of others. My friends and family tell me I pick real losers though when it comes to intimate relationships. Some question if I think I cannot get anyone better, someone who will treat me right. I have friends who don’t have neurological disorders who choose losers to be with too though. So it isn’t because of my own invisible illnesses. I guess I just have poor judgment. I’m willing to accept I might lack the self-esteem to try for better though.

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I am a TBI survivor – motor vehicle accident. I’ve been in a chair for six years and have had no intimate contact since the accident. I don’t speak well. I don’t move well. I’m still here though. I have hopes, dreams, desires, and goals just like everyone else. Do me a favor and don’t tell people like me the right person will come along. Or that someone will love me enough to look past all of this. Love starts with friendships right. So just be my friend. Don’t be afraid of people in a chair. Just be our friend. We aren’t asking for a commitment of more than that. People are afraid of wheelchairs. My left arm moves funny and people either look at me like I’m weird or like they want to help. I hate both of the looks. I have to think a long time before I speak. People come up and talk and then continue to talk even when I’m trying to think about what I want to say. They walk away after they stood there doing all the talking. I want to scream at them. My dad says that people are not comfortable with silence. They don’t understand I’m trying to respond. I would love to have people that would just sit with me and enjoy the scenery. If I could sit without having to listen I can say what I want to say. I have a lot to say.

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2 thoughts on “Intimacy and Invisible Illness

  1. Such vivid insights, especially on hearing loss and intimacy. Silence during sex is sort of spooky, but I’d never thought of it before. SO glad you posted this – in fact I’m sending a couple of sections to my hubby right now!

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