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.
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.
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.
©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 Rehabilitation, 71(2), 5-13.
Rogers, C. R., & Farson, R. E. (1957). Active listening. Lexington, Massachusetts: D.C. Heath and Company.