(Hey… I’m not an artist! But have you ever felt this way?)
One of the questions I am asked the most by folks who contact Hearing Elmo, is “Why doesn’t my family accept and understand who I am NOW?”
Before I even begin writing, let me express my hope that many of you will respond and share as I am very aware I do not have all the answers.
Why It Hurts
1. It hurts because the transition from “normal” to where you are was painful.
The school of hard knocks is – well – hard. Acquired disabilities and invisible/chronic illness are not easy to get use to when they first change a person. The journey from diagnosis to acceptance is a hard one. It hopefully has made us “better” and not “bitter”. I can attest to feeling stronger, more confident, and much more in tune with who I really am post-disability. Some of us have progressive symptoms and illnesses. We may adjust, only to have to do so again in a year or so. This too can grow us. But honey? It isn’t easy.
However, BECAUSE it was hard, it is hurtful when folks who knew us WHEN (back before our diagnosis), don’t accept or try to understand who we are NOW. We are still the same people. Our personalities have not changed. Our strengths and weaknesses are all still present – although you may have developed some new strengths because of your life path. So it is difficult when family members may sometimes be the hardest to teach how to talk to us now that we have a hearing loss. Or perhaps you are frustrated because a family reunion at a theme park is not ideal for you because you cannot ride any of the rides. Maybe you are utilizing a wheelchair, walker, or cane. A picnic and hike may not be a good way for you and your siblings to catch up – even if it has been a year since you’ve seen each other.
It’s not like we want recognition for the pain we’ve experienced. We aren’t looking for a medal. However, seeing any eye rolls or hearing frustrated sighs serve only to remind us our family
STILL
DOESN’T
GET
IT.
2. You expect your family members to care enough to accept you.
It’s not wedding vows. “In sickness and in health, for richer or for poorer…” But we have a reasonable expectation that our family members are going to love us and be there for us regardless. It doesn’t matter if we acquire a disability. We are still the same person. If Lymes disease has you aching and feverish a week out of every month, we expect compassion, not disdain. If CFS or MS has you weary, tired, and feeling as energetic as a centenarian, you expect understanding and maybe an offer to run an errand for you. If your eyesight is worsening due to various illness or disorders, you never expect frustrated outbursts when you explain you don’t have a ride to go to your nephew’s graduation.
But friends? Family members can need educating. Advocacy may begin at home. We wish it wasn’t necessary, but it may be very necessary. My kids grew up with me at best, hard-of-hearing. My husband, however, knew me before hearing loss. So I have to be willing to tell (nicely) him what works and what doesn’t. Don’t be surprised if it takes numerous lessons. Some heads are thicker than others.
What to Do
Talk to them. I’d elaborate, but honestly? You need to talk to them. Explain how you feel. Be willing to be vulnerable. Start with phrases that explain specifics and not general accusations. Example:
“When you sigh as I wobble into a shelf at the store it really hurts my feelings. I can’t help it when my world ‘twirls’. It’s hard enough to face the stares and hear the whispered remarks from strangers. I expect better from you. I expect your support.”
They May Never Get it
We can choose our friends, but we don’t choose our family. Blood is blood and it simply cannot be changed. However, you do not have to put up with people who ridicule you or try to injure you with words. You do not have to deliberately spend time with people who only make you feel worse. Sometimes? Sometimes those toxic people are family members. I hate it for you. I hate it for me. But it can be the painful truth.
Sometimes those friends that we choose? They become family. Maybe not by blood. Perhaps not by legal adoption. But folks who encourage us, lift us up, make us better people, understand, lend compassion and energy? They can become like family members. My heart’s desire is that you will find some folks like this if you haven’t already.
I welcome your thoughts on this. Knowing family members may grieve the person they once knew, or have trouble adjusting to the fact you are “differently abled” is important. Be patient. But also put healthy boundaries in place to keep unhealthy people from de-railing your progress with your own adjustments.
Denise Portis
© 2012 Personal Hearing Loss Journal
Hearing Elmo 
Denise you always have such food for thought. I don’t know all the problems brought on by family reactions just my own. Being short termed deafened put me on a different road. As I was the Cargiver for Mom and Husband I now (for a period) needed a caregiver. At first it was trying with marks-a-lots and board. Mom would get so frustrated as she had alzhiemers she just couldn’t get it and thought I just needed to pull out of it. My husband tried his best. My son did come home for 3 months quit his job and had to take over all three of us. I might add given all of us had issues going on he did a great job as he had to figure it all out himself. I never heard him complain and am really amazed how he jumped in and took care of us all. My mental state was gone for a while. So he did Cancer appointments with hubby. Dr. appt’s with mom. And was my escort for three months to so many different doctors. You know he never complained. Never said a whole lot just did what needed to be done and moved on to the next thing. I will forever be thankful that he did this for us and did a good job. Of course it had to end he had to go back to work for his own livelyhood.
That’s where the difference in my family kicked in. I would sit go go to family functions and everyone would just talk as if life was still the same. When I would ask one to repeat something never mind was the answer. I have tried to become very involved in those with hearing impairment as I at first needed to learn myself how to deal with this new lifestyle.
I don’t know how to make them “Get It” they still go on and talk on as though mom and grandma was the same. I don’t know if it is because it takes too much effort or they honestly don’t know how to handle it. When I talk about things and hearing issues, tinnitus, vertigo, hearing it like they listen but never have a response. Like I understand what you are going thru. I am going to try to be more considerate when we carry on conversations.
As I am writing this I am sitting here thinking well actually I am the actor in this as I act like I can hear and just know what is going on. So I have made it easy for them not to half to deal with it.
I know since I have been bilateral my life is wonderful. One on one conversations great. Maybe in learning to accept my “New Life” I have taught them without realizing it to just accept things and go on as nothing is wrong.
I have actually just in the last couple weeks on the phone ask them to speak slower even if I have to repeat it 3 or 4 times I don’t ask “What?” and give them the opportunity to cancel me out. Maybe as I am writing this I am thinking it is now time to teach them what I have learned and put it to practice in our own family. I need to stop avoiding the family when we are in the same room by keeping myself busy and letting them talk on without me. So I am going to start including myslef more in their group discussions so they will learn to communicate with me. I am at the age it is okay to say I need some attention “My Way” here. Ha! maybe even start a group. What did they say then? Probably get some interesting answers from different ones. Thanks Denise for another article of wisdom for us all. Sharon Crouch
Denise – You are one of my favorite bloggers. Thank you for educating all of us and touching our hearts. What a blessing you are!
Shanna
http://LipreadingMom.com
It is so hard for me to relate to those who have these attitudes, undoubtedly because I have lived with so many physical challenges at different points in my life. What I most definitely relate to is the critical importance of taking care of the self. Sometimes it does mean keeping at more than arm’s length loved ones who do not get us (me), and are absolutely dangerous, toxic, to one’s (my) physical and mental health. It took a long time for me recognize it and a bit longer to act accordingly. I had to learn to grieve the loss, which at first glance appeared self-inflicted, and at the same time celebrate the fact that I was showing myself due respect by setting those firm boundaries. Thanks for opening your heart and sharing your thoughts on this most difficult matter, Denise. P.S. I love the artwork! 🙂
Gah I was crying at the TITLE of this post, I’m shocked I made it through the whole thing. I’m having a “bad day” family-wise. Last night, Hubby made me feel so, so guilty for getting sick and becoming the new me. And since my illness is triggered by hormones and emotions, I’ve gotten sicker as I’ve gotten sadder, and since I feel guilty I’ve been working tirelessly to hide it, which makes me sadder, which makes me sicker….it goes on and on and on.
In some cases, it IS wedding vows! He said “in sickness and in health.” Obviously he couldn’t have predicted this….but he promised. I tend to forgive my sisters and parents a bit more easily when they don’t understand that I’m sick or tired, mostly because I’m not around them enough for them to reeeeally see the new me in action. But hubby has seen the days where I lay in bed crying and crying and I can’t even listen to him read because I’m in too much pain not to cry – loudly. How can he still not get it?
It is comforting to know that I’m not alone, and everyone has a lot of trouble “getting it.” I also love your drawing – as you can tell from my blog, I’m a huge fan of drawing silly stick people drawings. 🙂
I hate it for ya, Rachel. I think it is especially hurtful when those closest to us don’t get it. I like to think that if the shoe were on the other foot, I’d never respond crossly or frustrated. I do try to remember that it can indeed be frustrating to love someone with chronic illness or disability (IMHO, not as frustrating as actually living it). Hang in there! I feel your pain and can empathize! HUGS!
”Do not forsake your friend and your father’s friend, and do not go to your brother’s house in the day of your calamity. Better is a neighbor who is near than a brother who is far away.” (Proverbs 27:10 ESV) – The Reformation Study Bible says of this verse: The point of this instruction seems to be that one should develop relationships beyond the immediate family, for relatives are sometimes unwilling or unable to come to our aid.
I love that, Daniel. Thanks!