My Story: Painfully Lonely

My Story: Painfully Lonely

By Cynthia Toussaint.

Lately I’ve been reading reports about how loneliness fits hand-in-glove with high-impact chronic illness and pain. In fact, I’ve learned that the social isolation we suffer is more dangerous to our health than obesity and smoking. Disturbing stuff.

I’ve been living with CRPS, chronic fatigue syndrome and a host of other auto-immune issues for 35 plus years. For the first two, I was able to continue my career as a performer which kept me – though frightened and in severe pain – surrounded by a circus of stimulating, talented and caring people. I was living my passion with my tribe and, despite undiagnosed CRPS, I was happy and hopeful.

Cynthia Toussaint

By year three, my mysterious pain had spread and worsened to the point I couldn’t walk, let alone dance and perform on stage. I quickly found myself trapped in my mother’s suburban home. I was mostly unable to get out of bed, and when I did, crawling to her backyard was about as far as I got.

My life partner, John, soon quit his job performing around the world to move in and be my full-time caregiver during my futile attempts to beat this mysterious pain. As the months ticked off, people stopped dropping by and the phone rarely rang. While our lives were on hold, others moved on. My mom, siblings and many friends had left the area to pursue college and passions. What was once a bustling, epicenter-of-the-neighborhood now felt more like a morgue.

John experienced the isolation first as I was in too much pain to be lonely. I was aware, however, that support was becoming increasingly sparse. Mostly, I suspect this was due to my doctors explaining away my pain problems as “all in my head.” Soon, remaining friends were fearful and confused. Even neighbors stopped knocking at the door, something that was a constant while growing up, something I loved.

In a “Hail Mary” attempt to re-spark my showbiz career, John and I moved to Los Angeles, but those hopes quickly fizzled. That’s when the isolation and chronic loneliness became worse than my pain and fatigue. I felt warehoused in our condo unit, unable to leave without being assisted by John and my wheelchair. When I did get all the way to the car, there was nowhere to go and no one to see.

Like many women in pain and our partners, John and I were cut out of most social norms. We weren’t able to have children and John couldn’t hold down a fulfilling, acquaintance-generating job. He worked a nightshift doing mundane tasks to be available for my every need through our spirit-breaking, lonely days – which turned to months, then years.

Today, 33 years after being forced to quit my dream career, the loneliness hasn’t improved much. Yes, I run For Grace to help women in pain and my job keeps me busy. It also provides much meaning and travel, which is great. But mostly I work from home at a computer or on the phone. Despite having colleagues around the country, and even the world, no one knocks at the door after a long workday – which is what I yearn for most.

Some would advise John and me to throw in the social towel and accept what is. Chronically ill people are doomed to be lonely. I hear you, but I’m convinced that to maintain a decent level of wellness, we need human contact. Our species is a social one.

So recently John and I stepped up our community outreach. We joined our local YMCA which by their own mission “builds healthy communities.” I swim, do ballet-pilates and fundraise while gabbing with gal pals, a few who have become close. We’ve joined our local church of choice, where we attend service, sing in the choir, volunteer at events and meet-up with members outside of Sunday. We enjoy eating and buying fresh produce at our Farmer’s Market down the street. Next on the list is attending our council meetings to get to know more of our neighbors and look out for one another. While it’s difficult to do many of these activities in my wheelchair, community is just that important.

It can be a daunting task to make close connections in a big city like Los Angeles even for the healthiest among us. But, like every city, LA’s really a collection of small villages. Friends can be found if we want them badly enough, make every effort and never give up.

People-to-peopleness, I believe, is a must for wellness and self-care. Not internet, not social media, not virtual reality where “friends” and “connections”, while a nice complement, are a poor replacement for the real thing.

I’m known for my smile when I greet someone. I hug, I touch. I’m warm and open to closeness… still I yearn and hope for that knock at my front door.

Cynthia Toussaint lives in Los Angeles and runs For Grace—a non-profit that focuses on providing education and awareness for women in pain.

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Lynda

I think every pain patient needs to be searching for lawyers or attorneys willing to do a class action lawsuit for all pain patients that are being slandered by drug rehab doctors like P.R.O.P. & their extremist leader that so called drug rehab doctor torturing pain patients for his own fame & profits Dr. Kolondy. The discrimination is literally killing innocent people denied their effective pain care all because of the actions of illegal drug addicts. Actions abuse & addiction we have nothing to do with but we are blamed condemned to suffer for it. All of our pain patient rights are being violated, denied successful long term therapies, denied our continuity of care, they are violating our human & civil rights their prejudice based in falsehoods is lethal. If we all continue searching until one of us finds someone willing to take our case on & then we just have to get everyone to join & get our voices heard our documented medical proof seen & heard. If we don’t get heard soon we are all going to be tortured with under & flat out untreated pain if those that want us to suffer continue getting their way.

Kim

After posting my last comment, I read my prayer book. I wanted 2 share today’s message, it’s so reivent 2 loneliness.The impact of being alone in prayer with God can’t b overemphasized, Moses was alone at the burning bush,John the Baptist was alone in the wilderness, John was alone on the island of Patmos, ” if chosen men had never been alone, In deepest silence open doored to God, No greatness would have been dreamed or done.” We r truly never alone.

Kim

I have been basically bedridden ,most days,for years.I use to b so active & love being around people but not in recent years. My faith in God keeps me positive. My relationship with God & Jesus keeps me from being lonely. My life as I knew it is gone but I have been blessed in so many ways thru this trial.

Rita KIMBEL

It is the loneliest time of my life. 15 years homebound after a very active lifestyle, I just try not to think about it much. It makes me sad to think about it

D'Ann Roberts Jacobs

While your story is touching, you have many blessings ie you have a job, you have a partner that cares for you. These are things to deal on. You are never alone truly I tell you. Jesus is always with you. God bless
I found an amazing church a Seventh Day Adventist Church who treats me like family. They have been a blessing to me. Through the church I have found Jesus and while none of you will believe me that’s ok. But my Lord Jesus Christ has healed me for chronic pain CRPS. I His forever. I through Him have broken/died to our sinful nature which all are born with. It is no longer that I am bond by Satan but by my Lord Jesus Christ. I can do nothing but through Jesus Christ I can do anything!!!

Karlaboyd

I suffer chronic to severe pain due to injuries from abuse and have chronic post tramic stress disorder and was just put on chlestorol medicine when the doctor I had seen for years didn’t tell me it was due to poor diet from the PTSD and I totally understand how it is waiting on someone to understand it not in your head and my brother is with me he works and I am not able to work but I am a HOLY GHOST filled christian and if any need prayer I will pray with you talk to you The LORD wants people know this you have understand to be understood and that why people leave you lonely and just like if someone is not going through it then either they say it all in your head or avoid you we’ll I pray they never get this way but remember I understand totally

Alice Carroll

Thanks Cynthia, I also can relate. It’s hard to get out and meet people when you don’t feel well and hard to make plans when you’re not sure if you’ll feel up to going. Kudos to John for being there for you!

The knock on the door that I fear is the one where our government decides to place chronic pain patients into “facilities” as they deem we are not productive members of society.

Danny

While I am male and don’t have CRPS, I do suffer from several problems associated with Traumatic Brain Injury. I’ve been in disability for 27 years now. My wife of 22 years was promoted 5 years ago to the corporate HQ in another state, away from where I was born and raised and had several friends who understood my pain situation but remained close. I also had a couple of best friends from our college days who maintained close friendships. After the move, I really began to feel the loneliness. I am unable to get out, into situations where I can make new friends because I’m so limited by chronic, intractable pain. Then, a series of crushing incidents occurred at basically the same time. First, my wife was laid off from her job two weeks ago. Two days later, one of the best friends from college suddenly died, which was a massive loss for me. And while I’m dealing with these two types of grief, the specter of the CMS proposal for Medicare (my insurance) and Medicaid setting maximum pain meds equaling 90 MME, which will be a tremendous reduction for me, is constantly weighing on my shoulders as well. I know that if those regulations apply to me and my appeal is denied, my life is over. I can not handle this pain without the meds I’ve been prescribed for the last 16 years. I’ve never, in the 27 years since my accident, felt so alone and helpless. Severe grief and severe pain are not a good combination. And without caring, close friends to spend time with physically, the loneliness is overwhelming.

Annette Kimball

My daughter got shot and paralyzed at the age of 18 and she is now 32 years Young and in misery and pain and hates her life stuck in a wheelchair and feels very lonely and because of the opioid epidemic and because she smokes marijuana for the pain she cannot get her pain meds so now she turns to the streets and I worry every day if I’m going to find her dead or alive from getting a hold of the wrong drug. It’s awful to watch a loved one go through pain and loneliness I totally understand. God bless you for telling your story and helping others I am definitely interested in any assistance I can get to help with my daughter’s situation and I would love to read your book

nana

Hi, Cynthia
I understand your story all too well. Only I am the caregiver for my 88 yo husband AND I am the pain patient too. We spend most days and nights alone. My family long ago gave up. They don’t care to discuss it.,

So we moved across the country to be near my Husband’s family. That didn’t last 2 months. They thought we were coming to finance cars, we thought we were coming to be with family. We don’t have the money to finance anything for them. They are young enough to get a job and pay for their own cars. We can’t work anymore.

Unfortunately you have to be careful of what you wish for. Be sure they understand EVERYTHING from the git-go. Or make sure you do.

Jeniferlyn

The problem with inviting people–I gave it up due to being excited about company–then having to cancel due to that day being a bad one. I just missed the second out of 4 parties I started-due to pain. Everyone else went and had a great time-while I laid in bed at home. People who have good health think they understand–but after 14 years of pain–they get frustrated with me if I cancel.

Michele

I have never been so lonely or depressed as now. I wish I could get my life back but after 13 years of being on pain med and doing great, it was taken away from me because of all the nonsense going on. I have a son I have to raise and I can’t hardly do that now. I went from being told from my twenties til I was 39 being told by multiple surgeons how bad my back and hips are and that I will need back surgery and both hips replaced to now at 41 a new pain doctor telling me there’s nothing wrong with me! Even though he read the surgeons reports, seen the MRIs and knows I have fractured endplates in my back, need at least 3 fusions in my lower back, and have 3 herniated discs too but this is nothing! I was also told to just take a BUNCH of ibuprofen and Tylenol!!! If he would of even cared to read my file, I had serious ulcers when the pain first started because of how much ibuprofen I took trying to get rid of the pain. Then I was told that because I am young, that with the new laws, they is no long term pain solution for young people now. They can give old people the pain meds because they will either die soon or be put in a home so the doctors don’t have to worry about giving them the opioids for a long period. Where young people will be on them for much longer so I was told again that young people have to just learn to live with it! That is plain discrimination. Young people need it just as much as anybody else. Young people have a lot of years left to live but we are not important any more. I’m stuck not being able to hardly move because the pain is so bad. In the 13 years I tried every shot known to man, tens units, you name it, I tried it. Theres not a whole lot you can drop for bne pain besides pain meds. I never failed a drug test, always had the right amount of pills when I had to bring them in to be counted, never went up on the dose either. yet my two nephew’s are herion addicts and they have been on methadone for 12 years and not even weaned down any!! They can test positive on the pee test and still get thier methadone!! I thought the whole reason for methadone was the get them off of drugs. Why are the addicts aloud to take methadone for life when they decided to break the laws and do illegal drugs? They are not in chronic pain. They don’t even hurt. See why are the chronic pain patients being treated worse than herion addicts? They should be off the methadone within 7 months or a year if they taper it down extremely slow. Everything… Read more »

Louis Ogden

It’s true that many friends have fallen off the social register but as long as I have my wonderful wife, Kristen, in my life things are fine!

Liz

Hi Cynthia,

Thank you for your post. Chronic illness, pain or other, often leaves the sufferer isolated (for a myriad of reasons) from meaningful interpersonal relationships. I find this is, unfortunately, the same situation I find myself in.

Your premise that even though it may be a daunting task, making connections is a must – and worth every effort – stuck with me. Thank you for that encouraging reminder.

Brenda Stapleton

For many, a “John” would be a wonderful break in their loneliness. There’s always hope, even when we feel we can’t do anymore. And that is often all some have, but it’s something.

Amen Cynthia, well said. Could I possibly re-blog this?

Lisa Hess

Hello Cynthia, last summer I purchased your book and read it in less than a week and passed it on to my best friend who has recently become disabled, like me, for chronic pain. Loneliness is a word I’ve been using so much more these past few months as I’ve been laid up in bed because I cannot lean on my back on the sofa without a lot of pillows, therefore, not enough room for me (and I’m quite small) so I’ve been stuck in the only place I’m more comfortable to lie on my side which is my bed. My husband of 30 years rarely comes up to see me and when I’m in level 8-10 pain everyday (with meds), I don’t want to talk to anyone or see anyone because that means I have to be on my “game” which I cannot be. Driving isn’t easy, but to get anywhere I must drive as I live in the country. I’m so looking forward to June as it is the only month of the year when my pain is low due to low humidity. Your book was amazing and I suggest more should read it, because though you had so many hardships, your ending was so uplifting. I just wanted you to know, I appreciate you.

JoDawn

Cynthia-
So sad and so true. Thank heavens for our guys. Love to you both!
Jo

I know exactly your past hurdles personally, as I am also trying to improve my life. Thanks for your intimate insight and uplifting message. If you can do it, so can I!

not worth the effort

women for what ever reason know when and how to reach out. Men, don’t, and there are a thousand reasons for that. All I do know is in my area, there is virtually zero support for men in similar situations. Yes it bothers me that so much of this sort of thing ends up with such a strong gender bias: what men don’t go through this?…there is a very good reason why the suicide rate for men is so much higher…My point here is not to compare the genders but to simply say people living in pain regardless of gender are still people with all the same social needs/desires as anyone else.

Jim Moulton

Greetings,
My name is Jim, My back and neck have been in horrible shape for years, Fortunately I have had good pm doctors over the last 15 years. When I finally had to go on disability.
I still got good care. I have bipolar illness, which doesn’t help. But, it does make me feel suicidal sometimes.
I have now also come under the target of the FDA war on opioids. My oxycodone was cut back 30 mgs a week . The pain gets worse daily , my knees are starting to throb today. Having people who love you help. I have a good friend who has cfs, he is a good friend. As much as I can, I try to work as an advocate for pain patients.

sandy auriene sullivan

This is a common problem for all of us! Everyone with a chronic illness resulting in pain can end up isolated. To Quote you:

“Despite having colleagues around the country, and even the world, no one knocks at the door after a long workday – which is what I yearn for most.”

My suggestion would be to *invited* them. Our friends do not know when we’ll feel OK or when we don’t. So I do the bulk of the inviting as we have all been faced with turning down an invitation to do something or visit someone. It is important we invite people often and accept when they can’t come over to visit.

Ive been terribly isolated by no longer being in the workforce. I keep myself busy with local issues, like school board, local politics that has a faster impact on my children in school. And photography, but I invite people to go on short walks with me and my camera too!

It’s easy to wrap ones self up in a relationship; be it with one’s pain or primary significant other.

It’s also important we do different things with each other and alone or with friends.

Learning to love one’s own company can be one of the hardest challenges. Remember we’re blessed with caring s/o’s who help us out the door and to the car! Many don’t even have that to call on.

Katie Olmstead

While from afar….knock, knock. Cynthia and John! Hi, can I come in?

Maureen Muck

Spot on!

Wanita

I am sorry that you have gone through so much. Chronic Pain effects people in so many negative ways. I pray that yo have better days ahead!

Betty

I never set a place for loneliness. Loneliness is never allowed to enter my house.

Danny Harris

How many people are losing their pain management doctors for otc meds,and the doctors say don’t take Zantac or Vicks inhalers or something that cross contaminated with you metabolism rate????comprehensive spine and pain is the worst.and the urine tester want even talk to u you.what do you do?

Doug

Knock ,Knock ! Hello !
You are amazing !
Hope ( very much ) to see You again.

Holly Anderson

Cynthia, thank you so much for this post. As someone who also has CRPS, I echo your sentiments and can really identify as I’ve lost family and friends due to chronic pain. I appreciate your post more than words can express and hope for that knock on the door for all of us.