When They SHOULD… but they DON’T


Do you know the #1 topic of emails to Hearing Elmo (or face-to-face for those of you who know me personally) is support or the lack thereof? I have not met a single person with acquired disability, chronic illness, or invisible condition that took on their “new normal” by choice. We need support.

People need other people. I don’t care if you are an introvert and “loner”, or a gregarious, extrovert. All of us need human connections to some degree. I hypothesize that those of us who live with acquired disability, chronic illness, or other invisible condition may need solid, supportive relationships even more than those who do not face daily challenges. Coping is TOUGH stuff, and geesh… don’t I hate we don’t burn calories for all the work we put into COPING? In psychology,  we have a special term for how important our relationships are to adjustment – psychosocial adaptation. Bishop (2005) explains this better than I could: Psychosocial adaptation “may be conceived as a process of responding to the functional, psychological, and social changes that occur with the onset and experience of living with a disability, chronic illness, or associated treatments” (p. 6). There is a ridiculous amount of research on how important relationships are to an individual’s psychosocial adaptation. Intimate relationships are imperative to the quality of life for individuals who are differently-abled. All very interesting STUFF, in my humble opinion, but not at all the goal of or intended topic of this post.

Intimate Relationships

When we hear the word “intimate” we may think of sexual expression. Maybe we think of fancy-smancy underwear. (So aren’t “we” the weird ones?). Intimate relationships are interpersonal relationships that are physically OR emotionally intimate. This means that we can have close friends or family members who have an intimate personal relationship with us in that they know us very well. We have let down our guards at some point and shared things with them that others have no clue about nor care. Yes, intimacy is often physical as well, and those of us who have a physically intimate partner in a spouse or significant other, count it a major blessing to also be a friend to this individual.

Our expectation of our intimate relationships is “through thick and thin” (and I don’t mean WEIGHT). We expect these folks to love us on our good days and our bad days. We know we can belly-ache to them and they won’t think less of us. For those of us who took traditional vows, we put a lot of faith in “till death do us part”. These folks know us – and love us anyway.

When acquired disability or chronic illness enters a life unexpectedly, we rest in the knowledge that our spouse or significant other, and intimate connections with friends and family members will strengthen us and help us adapt. We have this HOPE and expectation, yet so many share with me that they were let down by someone they had counted on to BE THERE for them. Some of you have even had to deal with broken relationships. Others may have partners and friendships that have stuck like super-glue, but you cannot help but feel as if you are a burden and that these folks feel “stuck” with you.

Perhaps someone shared with you that they get tired of how tired you are. Maybe they shared or insinuated that life with you sure is HARD. As if things weren’t hard enough, someone you depend on is tired of your diagnosis too? Thanks so much for that…

I know. Not a single person reading this post hasn’t at some point wished they could have just ONE day of normalcy. “If I could just have 24 hours of normal, it would re-set my gripe-o-meter box”, shared a long-time reader. Yup. I get that! So for someone in our intimate circle to complain that they are tired of all that WE are tired of? It’s enough to make you want to spit. Or hit someone. Or SPIT while HITTING someone…

So what do you do when you realize that those who support you are having trouble supporting you? I have three tidbits to share.

1. If the Shoe Were On the Other Foot

Please don’t lash out and tell your significant bozos (cuz at the point you are mad at them for their lack of support means they have morphed from close relationships to close BOZOS), that if things were “the other way around” you would TOTALLY be there for them – ALWAYS.

This, my friends, is impossible to prove. YOU are the one dealing with a significant, life-changing diagnosis. We don’t know how we would react to “the shoe being on the other foot”. Criticizing and attacking another by insisting we would support and behave differently is not fair, nor is it justified. There are numerous studies that support that stress and anxiety can be vicarious experiences by those who support people who are struggling.

I believe one of the very best things we can do for those who support us is to acknowledge up front that WE KNOW THIS IS HARD ON THEM TOO.

2. Engage in Active Listening

All relationships benefit from active listening. Active listening was made popular by psychologist, Carl Rogers, in the 50’s. Many different counseling approaches now incorporate active listening to engage in good communication. One of the best descriptions of active listening that I’ve read can be found HERE. It is five WONDERFUL pages of all that is Active Listening. So I’m not going to take the time to explain it here and instead am giving you a “homework assignment” <wink>.

3. Yes, They Should. But… They Don’t

I cannot boast of 100% supportive relationships, nor brag that I’ve handled my own acquired disabilities with grace and diplomacy. Even though I’m in a “good place” right now with numerous supportive relationships, I have been disappointed by some of my relationships, and have even lost some folks along the way.

It hurts.

The biggest mistake one can make in shouldering all that encompasses living with significant challenges, is trying to do it alone. You are not alone.

For one thing, you are reading THIS. I care.

The Internet insures that we are NOT alone. The Internet is accessible to even those with significant challenges. If your intimate relationships and friendships have let you down, please know that you need others. Find them.

Places you can find support:

1. The newspaper: Many list various support groups and networks available for numerous types of challenges and health issues.

2. Churches: Many have support groups and networks available to both members and non-members.

3. Libraries: Many have community services bulletin boards (both physical and on-site, as well as electronic) that list numerous support groups.

4. Online forums: One only has to “Google” their diagnosis to find numerous avenues of support online. One great searchable database can be found HERE.

5. National non-profit and for-profit organizations: Most diagnosis also have organizations that provide education, advocacy, and support at the local, state, and national levels. Search the Internet for organizations that provide resources for your specific population. Many have support networks as well.

6. FaceBook and other Social Media Outlets: You’d be surprised what support resources are available on FaceBook. Many are closed groups as well as have confidentiality tenants of membership.

7. Start your own: I’m not a big fan of “wiki” anything (I suppose it is the teacher in me), but I have to admit, WikiHow did this up right. Check it out HERE.

Cut ‘Em Some Slack

Finally, I’d be a poor advocate if I didn’t give you heads up that people are going to disappoint you. Forgive them.

You are going to have a really bad day and need all kinds of support, practically draining those around you DRY. Dehydrated people can lash out. Forgive them.

You will struggle with having to live your life yet another day – so very tired of it all. Someone will point this out. Mock you. Complain about you. Forgive them.

Someone will try really hard to support you and come up short. Their personality or own needs simply do not allow them to be exactly what you need them to be. Forgive them – and support THEM.

You are going to have the kind of day where you are just done with EVERYONE. You burn your bridges, isolate yourself, and find yourself very, very alone. Forgive yourself. And rebuild.

Denise Portis

©2015 Personal Hearing Loss Journal

Bishop, M. (2005). Quality of Life and Psychosocial Adaptation to Chronic Illness and Acquired Disability: A Conceptual and Theoretical Synthesis. Journal Of Rehabilitation71(2), 5-13.

Rogers, C. R., & Farson, R. E. (1957). Active listening. Lexington, Massachusetts: D.C. Heath and Company.

6 thoughts on “When They SHOULD… but they DON’T

  1. I sorta had a day like that today with my mom. With her going into a retirement home/center, and her abilities not what they used to be, I find myself getting frustrated with little things, like her not hearing what I’m mumbling.
    Yes. I was mumbling. Mostly because it was a funny quip I wanted to say, but didn’t necessarily need everyone to hear it. She didn’t hear it and when I have to say it at the volume she needs, it loses its humor, so I just said “nothing.”
    Regardless, I know one day I’m going to wish she were still here to catch my silliness…especially since I got it from her.
    And then it makes me remember, maybe even if I have to say it at her necessary volume, she’ll find it comical.

  2. I’ve lost all of my every day friends. ALL. I don’t have hard feelings…mostly. They were all having babies about the time I started getting sick. They were busy building families as I suddenly lost my hearing, was having A LOT of vertigo, migraines that put me in the bed, surgeries….ect. Some didn’t even last through the first surgery, most were gone by the time I got lost the hearing in my first ear. This happened within 3 years. I tried hard not to focus on my illnesses when I talked to them. I wanted to talk about them. I wanted to still be the good friend who listened and was there for them. But I could no longer talk on the phone, or drive. This really put a hamper on things. I often had to cancel things…but they only invited us to parties. I had a VERY hard time in groups. I’d tell them this. I needed to see people in small groups. Not groups of 15 or more. I’d invite people to my house. It didn’t work….they were gone. For a while we kept up on Facebook….soon, even that was gone. They didn’t show up on my News Feed, if I wanted to see their news I had to go to each page…something was up. So every in person friend…gone.

    I have life long friends who are still there, but they live a long way away.

    Yes I have made friends on the internet, but it is different. They can sometimes disappear and you have no idea what happened. Heck they could have died and you just don’t know. You invested so time and caring and suddenly your friend is gone….I’ve had this happen a number of times. I’ve been afraid to put myself out there too often. I have a blog, people reach out to me when they are hurting, for Meniere’s and Bipolar. They disappear. I don’t know sometimes if they feel better. If I’ve said the wrong thing. of if they are worse. I care.

    I one friendship that has lasted years. I know she isn’t disappearing because we have shared out real life information. We know who we really are. And we know we really care.

    I need real life friendships. But my illness has made that very hard. VERY HARD. There is no support group for Meniere’s locally. I don’t drive because I have vertigo with no warning. And I still have it often. I don’t want to get involved with a Bipolar group because I have been stable for years and those support groups are normally for people who aren’t. I have some other conditions, but none I really feel I need support for.

    I am not a Christian, so church is out.

    I’m not trying to make excuses. I just feel that you make it seem so easy, but it isn’t always. I have tried and tried to brain storm how to make friends. It’s hard.

    Right now I’m dealing with Avascular Necrosis and facing a hip replacement. So this will wait until that is taken care of. I have thought of a Support group for that, but it will be gone soon.

    again, I just wanted to say, it isn’t as easy as it sounds. I’ve talked to a number of people on line who really miss having real life friends. Someone they can just sit and talk to. Have a real laugh with. not type hahaha.
    We need that human connection. but new friends don’t understand when you have to cancel half of the time.

    sorry this is so long, and thanks for listening.

  3. Hey Wendy!
    Thanks for responding. I must apologize for making it look easy. It is not.

    For one thing, many invisible illnesses and diagnosis have symptoms that include fatigue, pain, and impaired cognitive function (what I like to call brain fog). I’ve had to say “no thank you” to people who wanted to meet up and honestly? I needed a nap just to survive! I’ve also had friends invite me to very noisy places. Often, once you’ve said “no” a couple of times you stop being invited.

    I have more “online” friends than I do face-to-face friends. Some of the closer ones I have we have actually met up and try to once a year or so. Those I call “friends” that I do know face-to-face are friends, but not necessarily close (or intimate).

    I also agree that nothing replaces that human connection. I don’t know about you, but I’m a “hugger”. That’s hard to do online – grin.

    So I do apologize for writing as if it is easy. My intent was to impress that friendships are important – even necessary.

    Have you ever read the “Spoon Theory”? http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

    Another thing that I have dealt with is that there have been times where I honestly didn’t have the energy left to invest in deep friendships. I’ve had seasons in my life where it was that way. Right now, I am in a “good place” in that I do have some time available to invest myself. My ability to “do friendships” is limited, however, in communication issues and fatigue.

    Hang in there! Sounds like you have some major health hurdles in the near future. Sometimes you have to prioritize and make sure your own recovery is all that it can be. Perhaps trying to find some of these support groups can come later.


  4. Hi Denise….sorry it has taken me so long to reply back. I hope my comment before didn’t sound too harsh. I have read the spoon theory. I run out of spoons all the time. 🙂
    I also simply don’t have the energy to invest in deep friendships a lot of the time, yet I also feel they are necessary and miss them. Kind of a Catch 22 there huh? I don’t have family to step up either. So it’s just me and my hubby going through this together. And I feel very blessed that I have him. He is amazing! and unlike a lot of couples who go through something like this, we have grown closer and closer.

    I don’t mean to seem ungrateful for my online friends. They have seen me through a lot, and I treasure them. It’s just different.

    I will hang in there….always. One moment at a time.

    thanks for listening.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s