Invisible Disabilities Week, Oct. 15-21, 2017. You Are “Invisible No More”

Invisible Disabilities Week, Oct. 15-21, 2017. You Are “Invisible No More”

By Suzanne Stewart.

Several years ago I was approached by a YouTube channel called “Invisible No More TV”.  They had seen some of my advocacy videos for patients, chronic pain, RSD/CRPS and “invisible disabilities/illnesses”.  They asked me if I would like to be featured on their channel in a short video describing “invisible disabilities” and being “invisible no more.”  I agreed and I’ve been featured on that channel ever since 2012.  I later found out that this YouTube channel is a part of a much bigger organization called the “Invisible Disabilities Association”.  The reason that I’m telling you this today is because this week is “Invisible Disabilities Awareness week”.  I’ve always been a team player for IDA and have always supported them and they have always supported me, since we met in 2012.

Suzanne Stewart

First of all, let me explain that an “invisible disability”, according to the IDA website, which you can find by visiting: Invisibledisabilities.org, is “a physical, mental or neurological condition that limits a person’s movements, senses, or activities that is invisible to the onlooker.  Unfortunately, the very fact that these symptoms are invisible, can lead to misunderstandings, false perceptions and judgments.”  The Invisible Disabilities organization works tirelessly throughout the year to bring awareness to illnesses, diseases and disabilities that often times seem to go unnoticed.  One week during the year, the third week of October is the time to share your journey with invisible disabilities.  This year, that week is October 15th through the 21st, is “Invisible Disabilities awareness week”.  During this week, we will be posing many interactive posts on Facebook, Instagram and Twitter.  These are where you can share your personal stories, advocacy, favorite people, places, pets and anything else like this that you wish to share.  This is YOUR week to meet new friends, post a video or share  stories with others.  The reason for this is that we want to show you that you are “INVISIBLE NO MORE” and just because people say “but you look good”; doesn’t mean that nothing is wrong on the inside.

This is how this week will play out:  Monday was “share your story”.  You can post as much or as little as you wish. You can post a photo collage with a story underneath, or you can make a *short and sweet video (about 2 minutes is best).  Please note that Monday was the starting date for this activity, but you can post your story throughout the week.  On Tuesday we will be sharing stories of why invisible disabilities awareness is important in your life.  You can make a video or a photo collage about your life and the millions of others who live with illness and pain that goes unseen sometimes.  If you have the Invisible Disabilites glow-in-dark wristband, t-shirt or lapel pin; please wear it (you can buy them at the IDA website at:  www.InvisibleDisabilities.org).  If you have none or some of these, you can just choose a blue hat, scarf and/or a blue shirt. Invisible Disabilities Association wants to “turn the internet blue for millions living with Invisible Disabilities.  IDA is on  Instagram at: www.Instagram.com/invisibledisabilities, on Twitter at: www.twitter.com/InvDisabilities and on Facebook at:  www.Facebook.com/InvisibleDisabilities.  You can use the tag #InvisibleDisabilitiesWeek.

Just to give you a little bit of background about I.D.A.; they were founded in 1996. Their mission is to “encourage, educate and connect people and organizations touched by illness, pain and disability around the globe”.  They believe that “together we can make a difference in our communities and around the world.”

But now I just want to tell you a little bit about my friend Sherri Connell, who was an actress, dancer and loved to dance and sing. When she was 27 years old she lost the ability to take care of herself. She was diagnosed with progressive Multiple Sclerosis and she was in a wheelchair paralyzed.  At first, friends and family were understanding and supportive.  She has been able to regain some use of her legs with a lot of work and effort.  She still finds it difficult to stand and walk around, but because suddenly the other people in her life could no longer “see” how the MS was disabling, they stopped being as understanding.  It was not the wheelchair that kept her from her career, but the disabling fatigue, cognitive dysfunctions, horrible pain and dizziness too.  She could not care for her own daily needs.

Sherri’s husband Wayne, decided to try and tell people; help to educate their friends and family about her disabilities and illness.  He published a few writings from her daily journals onto a website. They thought long and hard and then decided on the name “Invisible Disabilities Association”.  Sherri quickly found out that she was not the only one, because she received numerous emails from people all over the world.  These people reiterated that they too, had felt alone and felt like nobody understood what they were going through because sometimes it was or is “invisible”. Then it became Wayne and Sherri’s passion to help others with disabling conditions by first believing them, and then by being compassionate, supportive and hopeful.

So then, in 1996, Wayne founded the Invisible Disabilities Association (a 501(c)3); with a mission to “Encourage, Educate and Connect People, Organizations Touched by Illness, Pain and Disability Around the  Globe”!  If you have any questions, you can reach out to Sherri Mitchell Connell or Wayne Connell on Facebook, Instagram or Twitter. You can also find them through the IDA website listed above.  Let’s all have a great week of spreading the awareness of Invisible Disabilities, Invisible Pain and Illnesses that go unnoticed to others at times, but never to those of us who live with it on a daily basis.

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Authored by: Suzanne Stewart

There are 10 comments for this article
  1. Virginia Holmes at 3:38 am

    Lisa Hess, thank you for your kind words. I am deeply sorry for the loss of your father. Also sorrowed that you also are living daily in chronic pain. I am glad to hear you have a great Pain Management Doctor. I would love to meet this person. The DDD of my spine is worse in my neck. Mine is hereditary. I had to have spinal fusion on the C5-6 in Feb 2003. After waking up I went to stand up and it was like I had been electrocuted. Laying on the floor screaming to my sisters for help, only able to feel the horrid burning pain in my neck and nothing more. I was paralyzed from the neck down. I had 2 Neurosurgeons. There was so much compression on my spinal cord that they said I would never walk again. At Faxton Hospital Regional Cancer Center, every day dragged by. My doctors would come in every day and take sharp tools to see if I could feel or move. Nothing for 2 weeks. With the Halo head and neck immobilizer on. They came in, as usual, started to poke me again all over again, it was when they poked my right foot the nerves reacted and I felt it. The happiness on Dr. Rusyniaks’ face was the best thing I had seen. He then asked if I could try to move my toes a little. Very little but I did. They did more scans showing the compression was going down. They scheduled me for surgery. Terrified, I did it. I had to learn to walk, but the fact I could feel was all I needed to keep fighting. If you are coming to NY. Are you going to New York Presbyterian Hospital? It is one of the best Hospitals. You will be in my prayers. I was wondering if you and Suzanne Stewart and possible others could help me get my story out? I did contact the news station and newspaper here, but they won’t post the truth(of course). I want to scream at the top of my lungs not just for me but for you and Kristin, Mist, April Dawn and everyone else that is being made to suffer. I keep praying that God will help me find relief, even though I receive care at home. I am not being helped at all. Nothing to help with this agony and not even medication to relieve nausea. If you and others know how to go about getting my story out there to be heard I would greatly appreciate it. For all of you on this page and millions of others suffering in pain. You all are in my prayers. Virginia Holmes

  2. Lisa Hess at 7:12 am

    Dearest Virginia, I had tears down my face as I read your story. My Grandfather also had Polycythemia Vera. Luckily, he found out late in life and went quickly. I am in chronic pain everyday too from several “invisible” illnesses as well and was recently tested for PV, but thank goodness for me, it was negative as it is a genetic disease to Ashkenazi Jews as I am and my family. But, I do have DDD with the same spine problems as you as well as FibroMyalgia, RA, OA and Osteoporosis from Late Stage Lyme and everyday, I too, get a little worse. I am having thyroid surgery in November, and gave them all written reports about the dangerous position I have of RA at C1/C2 vertebra. Part of me says don’t call to remind them about it as they may cancel the surgery I very much need because of the fear I have after I was very rudely turned down by the surgeon who’s been treating me for the past 8 years. He walked into the exam room and said to me “because I break your neck and you sue me I do not operate on you” is what he said to me. My spine doctor is the one who’s been pushing me to have this surgery for years and says there’s no issues for them to take it out. But I know I have to make sure it’s paid attention to before I go to NY for the surgery because if they accidentally bend my head back too far, it could snap and I’m a quad. But, I am one of the lucky ones to have an amazing Pain Management Doctor. Please, you are so young and my heart is breaking for you. I think you should put your story on You Tube and contact the National News stations to its viewing and see if we can get your story out there to get you the help you need.

  3. Virginia Holmes at 12:35 pm

    Thank you for your support. I did as MichaelL suggested, I wrote to WKTV News Channel 2 and The Observer-Dispatch. They may ignore it as they do with other important things. However, I also posted it on both facebooks page. I live on $800.00. I have nothing. Except for the sure will to fight to live. And possibly help others like me. Suzanne Stewart, I wrote to the National Pain Report asking if we could become friends. I guess I will have to wait and see if they will allow it. Thank you all. Virginia Holmes

  4. Virginia Holmes at 11:59 am

    MY Worst Night Terror Ever!
    To all of you that (sorry, hard to type when your crying). I didn’t think anyone cared. I am so weak, the cancer in my blood and bone marrow is metastatic now. I wrote my article yesterday but had to be rushed to the hospital. The cancer is eating at my bones. I had a heart attack yesterday when I fell I broke the toe on the right foot next to the big toe, fractured the right kneecap and left foot turned in such a horrible way it’s not a break it’s a crush injury. The Hydrocephalus on my brain my head is on fire. At the Hospital one Doctor wanted to do surgery on my crushed foot and my heart, a double bypass. ….the bases of my lungs have collapsed, the right and left common Iliac arteries are calcified, not allowing enough blood to get to my heart. The carotid arteries in my neck are 50% blocked. I am dying and I don’t want to not like this. NONE of the doctors in Utica, NY will touch me with a ten-foot pole. They said it’s pointless. Nothing they can do. I keep praying to God, WHY< WHY ME. Don't let me suffer like this. The Hydrocephalus has caused 2 Grand Mal Seizures Two weeks ago. I don't remember anything but this horrible agony I am in. I begged them to help me, even if it is just to ease my pain, just a little. I am on palliative care. But they don't care. I couldn't even get a damn nausea med……..I don't have a life, I don't get to enjoy going outside with my service dog anymore. I am stuck in this damn wheelchair. I was in Medical School, I made it to the top of the Dean's list. The awards are on my walls reminding me my dreams will never come true. I wanted to be a doctor, and remind them we are all the SAME! But they won't. I am poor white trash. Just another burden. I wanted to get my PH.D. and remind them " TO DO NO HARM" respect, empathy, caring, honest doctors. They don't exist anymore. I don't want to die screaming in agony. I don't want to die. Virginia Holmes

  5. April Dawn at 6:34 pm

    I am not only invisible, according to the CDC (and ALL the doctors and nurses and others who listen to them as if they were god and not corrupted by greed (such as insurance companies giving them “incentives” etc.), I don’t even exist. I have Chronic Lyme Disease. My live has been systematically destroyed by it, everything I worked so hard to build in my life, my calling as a mental health therapist – my degrees in college and graduate school, being in choirs and singing groups all my life, having a home, a car, independence, being able to engage in life, spiritual activities, relationships – both friendships and romantic – all slowly destroyed by this disease – I have been suffering for about 15 years now and it is only getting worse. I can’t even find a doctor willing to help me with “regular” medical problems as I am on pain medications (prescribed by a LLMD in a city 2 hours away – she is a specialist an doesn’t work as a regular doctor), I have had doctors flat out tell me that they won’t see me anymore (or ever) unless I stop taking the pain medications – without them I would not be alive. Insurance won’t acknowledge it as a disease and the CDC backs them up – isn’t that convenient for the insurance companies – they don’t have to pay for anything.

  6. Mist at 11:56 am

    Donald Trump is constantly on twitter we need to start a flood campaign as pain patients we need to be heard … And seen if pain patients can post here we can post to twitter. The war on pain patients is getting out of control . but we need # tags .trump watched 60 minute story … #chronicpainpatientnoreliefallowed ,not all people are aware of all the abbreviation s used by chronic pain patients…. I hate trying to read these stories an there are abbreviation s all through .. I can guarantee if I stop reading a story it is because of that not knowing what is being written bout . the government has used social security money . the more people that are under treated for pain the more disability claims they get. Suicides are up . I know 2 people who took their lives that is 2 too many. I know a vet who died a few weeks ago the VA was heartless as he died of bone cancer he suffered in pain for a month an then they decided to up medication when people went to visit and let staff know there are 8 brothers and sisters who demand they give him more ,they all visited.. Power in numbers is able to get things done .

  7. MichaelL at 11:14 am

    Sadly, Virginia, there is more they can do. But, they have forgotten thr oath to care for our patients! It seems that medical “care” does not apply to people like you. You should, at least, be under palliative care for the darned pain! Your doctors are afraid and don’t want to lose their practice, as I did after caring for chronic pain patients.

  8. William Dorn at 8:47 am

    Virginia mail your letter to your congressman and your local newspaper and tv station.People need to hear your story.You will put a face on chronic pain not the lies being told buy the press.If everyone in chronic pain would send there stories maybe we would be heard.GOD BLESS YOU i will pray for you.

  9. Suzanne Stewart at 8:20 am

    Virginia, you’re not invisible to me! I am working hard even though I am a chronic pain patient myself & on medication. I am fighting every day for us. I just talked with the legislator in Michigan yesterday. The sad part is this so many of them don’t really even know what all of this means and the chronic pain patients are getting lost in the cracks. There signing bills and making laws and they don’t know what 90 MME means or what Chronic Pain is all about. They don’t realize if they’ve never lived it, that addiction is different from dependency. It’s so sad. They need to get pain doctors on these bills. Ask them questions and learn and understand what they’re doing before they do these things. I understand this and I feel so bad for you. I live with about nine Chronic Pain Illnesses too. One of them is Rsd/CRPS, full body/systemic, and it’s horrible. I try to fill my life with writing, blogging & advocating for myself and others right now. I will fight for you as I’m trying to fight for all of us. If you would like to be my friend please ask National Pain Report for my email address and I will email you and we can maybe Skype or video chat or something? You’re not invisible to me !

  10. Virginia Holmes at 4:42 am

    I am 38 years old. I have been fighting to live. Since I was 21. I have cancer, severe hereditary degenerative disk disease with metal fusion. Herniated disks throughout my cervical, thoracic, lumbar, sacral and coccyx.Heart Attacks, mini-strokes, Calcified Arteries, Grand Mal Seizures, Hydrocephalus, collapsed lower bases of my lungs. The cancer was Polycythemia which has turned into Myeloproliferative Cancer.I have had 18 surgeries. Including Complete Hysterectomy, which is why I had miscarriage 2 girls and one son. They would have been 21, 18,17. I so wanted to be a mom, while still dancing and teaching ballet. But that Dream was shattered. Since I became sick. The harder I fight even in a wheelchair now. My own family even left me for dead while I was severely septic from a Necrotic Tumor. I died more than 7 times due to the sepsis went directly to my heart. So I lost my family, bc I needed them to take responsibility for what they have done, and the sad part both sisters, one is an RN and the other works in scheduling. I have been ostracized due to no one wants to really look at me, I am in agony 24/7. I was on strong medication and was promised by my ex Doctors, “That I would not suffer”.That was a lie. This Opiate Crisis and the People that abused the medication I was on, which helped me so I was able to get out of bed every day and try to live a life. Now I have nothing. Those same doctors have labeled me a drug addict. I have severe PTSD, panic and anxiety attacks and now agoraphobia due to the discrimination I have had to endure, bc Perfect strangers, doctors will not believe how really fragile and sick I am unless my medical records and scans, blood work or the horrendous scars are starring them in their faces. I am suffering to death, literally. They took away pain and anxiety meds, even though as of October 13th,2017 I was told. ” I am sorry there is nothing more than anyone of us can do!” I am invisible.

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