When We Become Disabled – Can Our Friends Handle The Changes?

When We Become Disabled – Can Our Friends Handle The Changes?

By Ellen Lenox Smith.

No one plans to become disabled. For many, it happens slowly as a condition progresses and for others, a horrible accident may alter one’s life dramatically and permanently. The immediate impact of a life changing disability can be overwhelming both physically and emotionally as one’s life takes an inevitable turn in new directions as they face these challenges. It becomes life changing not only for the person inflicted but also for those that have been part of their life.

Ellen Lenox Smith

When I suddenly became unable to walk, due to the extreme nature of the physical symptoms produced by Ehlers-Danlos Syndrome, I was forced to accept a life in a wheelchair for four years. The first thing I noticed was the gradual loss of many of my friends of long standing. Also, those that held onto our friendship seemed at times uncomfortable and insecure in attempting to relate to the “new me”.  So, I had a new mission to accept and learn to live with:

#1 – A life without those friends that could not handle the “new me”

#2 – Learning how to help those that chose to still be part of my life be more comfortable around me.

Losing Friends

I found it so difficult to understand why someone, who had been my friend and reached out to me before, would not want to continue our relationship just because I was now disabled. I didn’t ask for this to happen to me! Disability causes us to learn to accept so much when this happens to our life, but to have to add loss of friends is heartbreaking, to say the least. You are left wondering, is that how I would have reacted to them? And it makes you question yourself and what you mean to others, if it is that easy to eliminate you from their life.

What crosses my mind as to why they pull away:

  • Is it too heartbreaking to watch this happen to someone?
  • Does the disabled friend, who is not able to do what they could before, leave the other person at a loss as to what to do around you, how to accommodate you and confused as to how to continue to include you in their life activities?
  • Are they too busy with their life to take the time to understand how frightened, lost, and left out we are left to feel?
  • Do we represent sadness in life now and for some, that is just too overwhelming?
  • Do we become more work and an inconvenience to them?

Can We Help Hold Our Friendships?

  • I found while living life in that wheelchair, that I needed to demonstrate “I was ok” and “still the me” they knew, but a revised version.
  • I found humor works well lightening the air about the new life I was to cope with. If they could see I could joke about this new challenge, then maybe they could see through the disability and remember that “me” they knew before becoming disabled.
  • Despite my struggles, I find it important never to stop caring about others and showing compassion for others struggles in life.
  • I find it important not to compare and claim my issues to be more of a problem than others. Instead, I accept that we all have challenges in life to face and we should not make these issues a competition.

Becoming disabled is heartbreaking, confusing, limiting and life changing, to say the least. Many of the changes that come with disabilities are about loss. The loss of valued relationships can transcend and magnify all of the many other losses the disabled experience. The physical pain experienced does not need to be compounded by the often extreme suffering resulting from the loss of valued relationships. The social isolation, which can result from such losses, can be as damaging as the injury or disease itself.  Sometimes we have to be the stronger person to let others know we are coping the best we can. However, imagine how nice it would be to not feel discarded by others but instead embraced. May we find ways to hold on to those that matter to us in life, no matter what comes their or our way, to cope with.

May Life Be Kind to you,

Ellen Lenox Smith

Author of: It Hurts Like Hell!: I Live With Pain– And Have a Good Life, Anyway, and My Life as a Service Dog!

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of National Pain Report.

 

 

Ellen Lenox Smith and her husband Stuart live in Rhode Island. They are co-directors for medical cannabis advocacy for the U.S. Pain Foundation, along with Ellen on the board and they both also serve as board members for the Rhode Island Patient Advocacy Coalition. For more information about medical cannabis visit their website. https://ellenandstuartsmith.squarespace.com/

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Authored by: Ellen Lenox Smith

Ellen Lenox Smith and her husband Stuart live in Rhode Island. They are co-directors for medical cannabis advocacy for the U.S. Pain Foundation, along with Ellen on the board and they both also serve as board members for the Rhode Island Patient Advocacy Coalition. For more information about medical cannabis visit their website. https://ellenandstuartsmith.squarespace.com/

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Dorothy

When my husband love of my life passed away I lost my home. I took care of father in law, then my Mom, then my husband despite being disabled .. because of good meds.
“Friends” offered to move me to their place where i could ‘relax the rest of my life and have someone check on me, etc etc. Dont need a car, we will take you anywhere, anytime.
Less than a year of work my butt off for these people, despite constant pain which increased as they tapered meds to nearly nothing .. and then terminated me I finally was unable to even walk.
All the rest? Never happened. Check on me? Call? Nope. As long as i could push myself during the day to contribute, that was my ‘company of friends’. Once i could no longer move i saw no one, no one called, no one helped me get food. Nothing. In the house 24/7 fighting agony and depression for 4 months … and they thought it was all fake. I hope to move back by family this spring because pain is twice as bad when there is no one who cares, no one to share with, I even had no phone for a month and because no one came I couldn’t say so. Suicide has been very close these last months. I am so tired.

Joanna M

Interesting subject!

Linette Woron

I really don’t have friends. I have a few aquaintances, at this point. People don’t understand. I’ve had someone say to me” do you just work long enough so you can be off work again?” and and another just tell me I was on too MUCH medicine, others say that THEY just do yoga, go for a run, get up early and exercise, drink a certain tea, etc., etc., and feel just fine when they hurt. Lately an acquaintance posted on Facebook how their recently dead father always went to work” no matter what”. Well I’m finally applying for long term disability-

Hayden

Unfortunately, changes in healthcare for those of us that “were” functioning pain management patients, the “guideline” has caused an unreported number of people/patients to become…..disabled. Opiate/opioid medication did nothing short of enabling untold numbers of patients to be able to continue to do the necessary deeds to stay alive. Those who were already disabled from sickness, injury deserve “some” option to manage pain. The “experts” do not have the sense to realize that if it were not for the grace of GOD, there go I.

Danny

I had many close friends that have no become acquaintances. Of the two true friends that stuck with me, one of them (for over 32 years) passed away in February. The other one (of over 50 years) died on Thanksgiving morning. I am proud to say that I was with him during his last night and when he passed. If I hadn’t been there, he would have been alone. But now, I don’t have anyone I call a “friend”. Nobody calls nobody works around how I feel to do something with me. I’ve even had an acquaintances I’d met through a pain group turn their backs on me. With the coming Medicare prescription rules and my Dr forcing me to titrate my meds down since August, the future is not very bright.

All of the stories below have touched my heart. There’s one that stands out greatly to me, it is from Geoffrey Nielsen. What you wrote for some reason is exactly what I needed to read this morning. Oftentimes after I comment on a story I will come back several times to read the other comments from folks that may take a day or two to respond. Thank you so much for your beautiful words and courage, as well as another lesson in life. The old saying we learn something new everyday isn’t just a saying, it’s the truth and I thank you so very much! One just never knows what they might say that will stick with someone else for the rest of their life. You sir, have done just that! Ellen I also want to thank you so much for bringing up such a subject and getting it out in the open, you are definitely one lovely lady! While I’m passing out thank yous, I would like to take this opportunity to also thank Ed Coughlin and staff for putting together the National Pain Report. It’s been more than a blessing to be able to talk to others about everything that’s going on, folks who truly, truly understand! So many of you have become my friends and don’t even know it. May God continue to bless you all as well as everyone who is disabled in some form or fashion, suffering from chronic pain.

Cheryl

I never realized that being disabled is so lonely. I remember in jr. high the handicapped(as we called the then), sticking to themselves in class. No one talked or really associated themselves we the group. I made friends with a girl in the group. We became fast and tight friends. I was like a daughter to their large family. It didn’t bother me that she had problems. We laughed, played and chased boys as 14 year old girls are went to do. I moved away, she went on to nursing school.

Fast forward 30 yrs and now I too am disabled. I had no idea the box people put her in. I am now in that very same box.Why I ask? I am the same person inside, like the same hobbies, books, movies etc…Yet somehow, people see me different. They don’t ask me to go places because they think I am in too much pain to go, can’t speak on the phone because I am too tired, think pain has stopped my sense of humor. All untrue of course. Yes, I have bad days like everyone. But I feel ostracized, like I wear this badge that says I am handicapped! I enjoy nothing. Don’t talk to me, acknowledge me, think I have desires, wants or needs. All untrue of course.

We become invisible to society as a whole. Somehow less than human. To be pitied and avoided as if afraid someone will catch our disability. So sad not only for us, but them also. We have a lot to offer and give to our friends, family and society. Look at Steven Hawkings. Friends “ghost” us even on social media. We’re being punished for something we have no control over.

I urge anyone who is not disabled to become a friend of someone who is. A true friend. We have a lot to offer. You will be as enriched by the experience as I know we will.

God bless, keep strength and faith in your lives.

Anita Hammonds

I myself have had to face the fact some friends couldn’t handle it. Yes it made me sad but,I cherish those that have remained in my life.
I’ve had health problems since I was a child.
I’ve over come many obstacles during my life.
Starting with parents that denied medical care for their own sick child ME.
THE SCHOOL WAS WORRIED ABOUT ME BECAUSE I MISSED SO MUCH SCHOOL.
My mother told them they didn’t know what was wrong with me they were so shocked they told her you need to take her to the Dr.
Yes it was bad…
I was pale, skin and bones Dr.was pissed and asked why is she so skinny she’s white as a sheet. Mom said she throws up her breakfast. Dr.said you can’t send her to school without breakfast. Mom well I don’t know what to do. Dr.said at least buy her instant breakfast she’s severely anemic but her some iron pills. Dad bought 30 pills. I was still anemic I craved spinach. Now I know why it’s rich in iron. My body was telling me what it needed so I learned to listen to my bodies certain cravings. I had no immune system I got everything going around at school.
I’m 61 but,feel like I’ve lived 100yrs.packed as much fun as I could in my life while I still could. I was born with scoliosis and just bad genes. Juevenil arthritis unaddressed of course. I didn’t know I just knew my back would really hurt sometimes. I’ve dealt with one health problem after another but, I love life to much to sit around by myself so if I can I get out and do something. I treasure those days and hold on to them because I never know when I’m going to have some major flare up like opps can’t walk..can you please help me to my car. Then sit until I was ok to drive back home.
Yep that’s my life but,oh how angels have watched over me. My life has been a wonderment with wonderful people I adopted as my family as a child. Life can be a wonderland. It’s all in your state of mind..
Be well be happy I’m sending you an Angel Ellen.

Linda N Coffman

Thank you for the beautifully written article! I became disabled after surviving stage 3 C cancer. One of the chemotherapy agents used to save my life at age 41, also caused permanent and painful neuropathy, as well as damage caused by radiation treatment. My mind, my sense of humor, and my intelligence, as well as my soul are unchanged. The loss of friends and even a close family member have caused so much emotional pain. I want to tell from the roof, “I am still me!” I work very hard to not be a burden to anyone! I even continue to teach full time, against doctor’s wishes, to continue to help others. It is so frustrating to be disabled, our minds feel just fine, but our bodies have changed. The lesson of learning to accept others for whole they are on the inside, becomes very important when a friend or family member becomes disabled. We are strong people, fighters, who challenge ourselves everyday to live the best life possible in spite of our disability and pain! Thank you for a well written and very meaningful post!

Toni

I had a so called friend tell me “call me when you come back out into the real world”. I am barely able to walk now because of 4 damaged discs, osteo, DDD, fibro and peripheral neuropathy and she said that to me. The real gift all of this has brought me is knowing who my real friends are and are not.

Katie Olmstead

This is certainly a touchy subject. Thank you for bringing it up. I am sure I am not unique in saying that my increasing disability was the last straw in my marriage. I didn’t realize how shaky my marriage was. I remember after my biggest knee surgery, when I was in bed or on the couch for quite a while, at first, my husband would bring me meals on a tray and sit with me and it was like a picnic for two. That devolved quickly into, “I don’t know what to make for the kids; I don’t know what to buy; I don’t know….” Now, he could have said, “Thank you for running our home so smoothly for all these years that I didn’t even realize how much work you do for us. Thank you for all you have done and I miss you being able-bodied and appreciate you and even though this is hard, we’ll get through it.” Instead, he just withdrew. That was the beginning of the end. I have had 16 years on my own now after the 4 years at the end of my marriage. I am better off. Disability certainly clears out the disloyal friends or family.
My good friends try hard to understand, with different levels of success, but most have stuck with me. It burned when a close friend said, as someone mentioned here, “Well, aren’t you lucky that you don’t have to work.” I chose to walk away from just that one comment rather than the friendship. She doesn’t get that part but other parts of the friendship are strong.

Geoffrey Nielson

I have come to accept my disabilitIes. The quantity of changes over my life are my areas of wrestling with acceptance. And if I’m too involved with the ‘wrestling’, I need to step back.
Letting Go and Letting God has been my human power in action. Pain levels can ascend and descend as easily as my emotional maturity. Not taking my power back to plan trips, take laugh breaks and even smoke a good cigar have been my walks of shame with my disabilities.
Without remorse, I had to befriend myself in my addictions, (48 years), as well as my disabilities, (8 years). And in Recovery (10 years).I asked for help from a Power Greater than myself for the daily help I need and others need. The process has been inclusive with ‘humility 001’ to now ‘daily humility for Recovery from everything, especially myself.
Here are a few things I hope I have respectfully learned:
Life has been the great reminder of ‘Change.’
Wellness is not a luxury.
Prayer and Meditation are my constant companions.
From Sunup to Sundown, I can only change me.
Death can take away.
People’s choices are people’s choices. It’s how I respond that is renewable.
No matter where I go, I’ll be there too.
Thank you Ellen.
Your courage manifests in many ways. Your teaching and reaching out are valuable.
May we be all so blessed to “Let Go, Let God”, “keep our chins up” and help those who need our help.

Virginia

I believe it is fear which keeps people away from us and they don’t know how to act or what to say because they don’t want to hurt our feelings.
On the other hand they just don’t like to see disabled people. I’ve been a caregiver for many years, heard many reasons from family members why they cannot deal with their disabled kin. They have awful reasons. Now this:

You are an excellent writer, and
a strong ally for us struggling to maintain our course in our various journeys of trials and disabilities.
I want to take a moment and thank you for you. Not just for what you’ve done, and that is a lot and has been a tremendous help for many and continues to be. But for you, a shining star in a dark world of pain and suffering giving hope too those who may have no hope, or lost their hope.
I want to thank you for you. For your giving spirit,a willingness to share with others in order to help them to not have to go thru what you had to go thru.
I want to thank you for you, for being you, and no one else. For being the one who would not give up when all else went down.
Thank you, Ellen, for you. May God be always kind to you and continue to bless you and keep you in healing.
With all my sincere thanks, and His love and especially mine,
Virginia

The word disability in itself is tragic. It comes with a hefty price tag I might add. First your family and friends tell you there’s no way you can get it, then you do. Then look at you like oh okay there really is something wrong with you, isn’t there? I too Ellen often wondered why I had to lose my family and my friends coupled with my health. It was almost too much. Then I had to stop and think there’s a reason for everything and this is just part of your life now. This is how it’s going to play out, if others deem it necessary to walk away then there’s nothing I can do. I like yourself thought trying to change my attitude might help. I thought perhaps this is the problem, after attempting such I came to realize my attitude hadn’t changed at alI. I was the same old me with the exception that I couldn’t walk very well, I was in constant pain, especially my back and ankle. On occasion my knee would pop out of socket. Although I was still me, I still had my heart and was still good to everyone! I just couldn’t figure out what had happened or why. Then it dawned on me, I think they were scared, also it was more than obvious I couldn’t do the things I used to, and come to find out one of my friends was jealous because, “I didn’t have” to work anymore! Of course that’s why I had to file for disability in the first place! It wasn’t a privilege it was a have too or else! It was easier just to pretend like I never existed in the first place. To this day one true friend remains, thankfully God sent a couple more my way that are definitely true blue! I try to forget those days and continue on. This year alone my mother was diagnosed with severe Alzheimer’s, my stepdad of 25 years passed away, my brother is in the hospital I fear dying and due to the fact I walk funny up and down stairs, for the time being, I’ve lost the love of my life! Yet I still think, how truly blessed I am… compared to others!

Rebecca Gavin

I experienced the loss of someone I had thought was a close friend. In addition to becoming disabled, I had to move to a different city to be closer to family. I thought the relationship would continue by phone – obviously not as close as before -but still there. Nope. She just cut me off. She said she needed friends she could do things with. It was sad and surprising. I still miss her.