📢 Let Your Voice Be Heard 📢 Share Your Story Here
Hi to everyone who is part of this awesome community!
During the discussions that I host every week in the Disability Support Room, I have heard a lot of you say that you want to share your story but just don't know how to... If that is you, then you have come to the right thread!
This is a safe place for you to educate others on the disability/disabilities you have, and share anything else that you would like to tell others about you. 😊
Here are some questions that can help you get started in sharing your story
- What disability/disabilities do you have? Tell us more about it
- How does it affect you/your daily life?
- Do you have support? If so, who do you have? If not, what support do you wish you did have?
- What things would you like to educate others on?
- What resources do you wish were on Cups that would help more people know about different disabilities
These are only a few questions to get you started but you're welcome to add more your post below or just share your story in your own way with out using any of these questions
So feel free to post below! Your voice does matter and you deserve to be heard
Sending support to everyone 😊
@Optimisticempath Thank you for being here for support!!
Hello I am David and I am 60 and struggle with degenerative disc disease which creates spinal facet syndrome from the nerves pinching in my lower spine. It is a chronic pain disability. I also have had both knees joints replaced. I have torn my left and right distal bicep tendons, I was only able to the right side repaired. I struggle with my mental health having Major depressive disorder, General Anxiety disorder and P.T.S.D.. I am currently living in a Nursing and Rehabilitation facility. I really hate what my life has become. Pain everyday and no family or friends ever come to visit me. I will have been here 5 months come July 1st. The only support I get here is *** food and shelter. Their therapist really sucks, It will be an entire month until my next session.
@bgdave
That sounds a very painful condition. And you describe a life in which it sounds like you have limited control. I would most definitely struggle with that. The enjoyment of food you like is such a simple pleasure, I'm so sorry to hear that even that has been taken from you.
I'm sorry that I can offer nothing to help. But thank you for sharing. It is good to hear your story.
@bgdave
Hi David! Thank you for the introduction! Its always awesome to meet people on Cups.
It sounds like you deal with a lot of chronic pain. I'm sorry to hear that. I can definitely relate. I have chronic pain too.. It's definitely hard at times.
How are you feeling about living in the Nursing and Rehabilitation facility?
I can hear that you are having a hard time with how your life looks right now. Grief can be a really big thing that a lot of us face with disabilities.
We are here for you! Remember, you're not alone with this. You do have people here who are wanting to support you
I have a few mental and physical disabilities.
Due to child abuse I have PTSD, Severe Depression, Bi-polar II, Anxiety and Borderline Personality Disorder.
Physically I am limited by knee mobility, whiplash neck pain, and a broken shoulder injuries.
I am grateful that I am so messed up I was granted Social Security Disability Insurance with no problem. Otherwise I would be homeless or worse. Due to my disability I have a hard time managing my apartment and finances. Things like cleaning, cooking, laundry, are hard for me. But I get by.
On a more positive note:
Last week I asked my doctor to prescribe a handicap parking placard to hang on my car's mirror. I went to the DMV today and got the right to park closer to the store.
Last month I went to do my hobby in the park, and after walking around for 20 min, I injured myself. My Knees were in pain for days. I wanted to do my hobby again, so today I prepared for a few minutes in the park by putting on my heavy-duty knee braces. I feel pain free after having some fun in the sun.
Hope I feel the same tomorrow!
And I hope you are pain free too!
Hey @Positron2 . It's awesome to see you. Thank you for taking the time to answer this thread. I appreciate you being so open and honest about the things you're experiencing 😊
I'm sorry to hear about the abuse you went through as a child. I am a survivor too so can relate somewhat.
It sounds like you face a lot of pain due to your physical disabilities. I can imagine that must be difficult.
I'm sorry that you have a hard time managing your apartment and finances. Do you have anyone that is able to help you.
Yay! I'm so glad you were able to get a disability badge for your car. Parking closer to stores definitely makes a difference.
Knee braces can definitely be helpful. You said you went to do your hobby in the park. Would you like to share more about that hobby?
@beck1
Back in the day I used to race Radio Control cars.
I got myself a new R/C truck for Christmas.
A Team Associated Pro4(wheel drive) Short Course race truck.
It's a good hobby to get me out in the park to run it.
I have C-PTSD along with anxiety and depression. There may be more that hasn't been diagnosed, but it all came from the abuse. I was sexually abused, physically abused, emotionally abused, and verbally abused. The sexual abuse went on for about four months. the other abuse all went on for years.
I have epilepsy, high blood pressure, high cholesterol, and hypothyroidism. I am impotent. I have scoliosis and have fractured vertebrae from a seizure in 2015. I have an enlarged prostate, which makes it difficult to pee. I have chronic pain in my left testicle ever since an injury in 2007.
Hey @WharfRat thanks for taking the time to answer this thread!! 😊
I'm sorry to hear that you went through abuse. I can imagine that must be hard to deal with at times, especially having C-PTSD as well.
I can hear that you experience a lot of physical disabilities too. How do you feel like you cope with them?
@beck1
I have to live with them. They didn't happen all at once. I was born with some problems, such as the scoliosis, but others came along at one point or another. The epilepsy started when I was 28. The impotence began when I was 39 or 40. The chronic pain in my left testicle started with an injury in May of 2007, so I was 46. I fractured some vertebrae during a seizure in October of 2015 and have had back trouble ever since. Because they came one at a time, it was just kind of adding one more problem to the list as each one came along.
In here I'm called "slow" or "decline"...either one fits, but I prefer "slow".
In my mid-teens I was Dx'ed with "low-grade chronic depression". Sometimes it is also known as dysthymia. I have never been hospitalized for it but I do have episodes & it has affected my life, & not in a positive way.
In my mid-twenties I got chronic tendinitis, which in those days meant knee & shoulder pain & reduced use of my right hand for a while. These days it affects whatever joint it wants to. My knees are the usual target. Also got IBS, which while not the most dangerous or horrific chronic condition is surely the most embarrassing one to have. When I gotta go to the restroom I have to get there right effing now. More than once I've run to the john like a little kid...or skittered there in that clenched-a*s shuffle so as not to mess my drawers.
Fast-forward a few years... In late 2014 I started having dizzy spells, for a few seconds at a time after sneezing or an allergy attack. (I've always had allergies) They gradually increased in length & severity, & made getting up in the morning difficult & then mostly impossible. Through 2016 it got worse. Finally in March 2017 I got my diagnosis: Meniere's disease. It is my worst chronic illness so far. Like all chronic diseases it is incurable & greatly reduces one's quality of existence. You can find a description & list of symptoms here...yes, I have them all. Including nystagmus of the eyes whenever I have a flareup.
Add all those conditions up & what you get is a disabled person who gets stuck at home for days at a time, & sometimes has trouble doing basic life tasks. I'm still alive after four decades but who knows how much longer...or if I want to live that much longer.
These days I have a touch of arthritis in my fingers, also. Growing old stinks.
Hey @slowdecline48 ! Thank you for taking the time out of your day to reply to this thread. I know it's not always easy to talk about ourselves but I appreciate you feeling open enough to share.
Thank you for sharing that you were diagnosed with Dysthymia. You said that you have episodes that affect your life. Would you feel comfortable sharing more about that?
I appreciate you sharing what Tendinitis is. How do you feel like this impacts your day to day life?
IBS is definitely hard. This is something that I have too and can definitely understand how embarrassing it is at times.
I haven't heard of Meiere's Disease before so I appreciate you sharing more information about it. I have POTS so understand how hard it is to struggle with dizziness. Its hard for sure.
I appreciate you being so open and honest about the disabilities you have. I love that you're part of this community and I hope you are able to get some support. Remember, we do also have the Disability Support Room where you can chat to others who may be experiencing similar.
My teeth are starting to rot from all the sugar in your response... But seriously, thanks.
Re the dysthymia: I dunno...it affects me the way it affects most people who have it. Episodes, & probably contributes to my tendencies toward pessimism (though that is as much due to life experiences as anything else).
Re the tendinitis: It has caused me to quit jobs involving physical labor. I did that twice, neither time willingly. I just had to face the facts. In quitting the 2nd job I also gave up a dream I had of becoming an electrician (& a unionized one, too!) & making that my career. It was a major defeat in my life...didn't leave my apartment for about a week after that. Other effects it has had on my life I will not describe, but none of them have been good. I prefer to work with my hands & have always disliked the idea of sitting at a desk or in a cubicle for my entire working life. My temperament is basically blue-collar while my body doesn't have that capability. One irony: the onset of Meniere's has removed any possibility of my being desk-bound until retirement age...you could say I retired early.
@slowdecline48
Awe hehe. Well you deserve the support and the response.
Having to leave work due to disabilities/chronic illnesses is definitely hard and something that I think is very important to talk about. It can reinforce that our life is not the same as others. I'm sorry that you have had to experience that.
I am very much like you. I prefer to be hands on. But just know, there are other jobs out there for those of us who have to stay seated or can't overexert.
Have you ever thought of volunteering as a Listener here? Although you don't get paid, it can be very rewarding and make a person feel like they are contributing 😊
@beck1 Sorry to hear you have POTS!... Since my Dx I've met a few other chronic people online; POTS seems to be fairly common among people with certain conditions. Does it go with autoimmune disorders a lot or...?
I bet you're awfully careful when getting up from a seated or lying position...have heard about that sudden passing out & falling-down thing, more than once. Might be easy to eventually sustain mild brain damage if you do that enough times.
I have fibromyalgia so I’m in constant pain and always fatigued. But I qualified for SSDI because of my mental health issues. I have Schizoaffective Disorder, PTSD, OCD, General Anxiety Disorder, and Major Depressive Disorder. My psychosis is well under control with meds. But my anxiety is relentless. And I suffer from disturbing intrusive thoughts.
I can’t cook for myself, so I eat a lot of packaged or frozen foods. Showering is exhausting and if I have to wash my hair I have to rest for an hour afterwards. I can’t work, so I’m on disability. I rarely have the emotional strength to date, so I’m lonely in that respect.
I cope by seeing my psychiatrist, online individual psychotherapy, and supportive friends and family. More than anything, my dogs offer me emotional support and companionship that is priceless. Walking them gets me out of bed each day. They lick the tears off my face when I cry. They have literally saved my life once when I was suicidal. I don’t know what I’d do without them.
I’d like others to understand invisible illnesses between.
I haven’t tried the group forums on here yet, but I’m hoping that’s a good source of support.
@ILoveMyDogs100 In my experience, the chat rooms are just about always good...the ones I've gone to, at least. It's best if you get into one as early as possible after 5 p.m. or so. There are always a few people like us in there, plus a mod.
Online community ain't everything but it's better than nothing.
Hey @ILoveMyDogs100 thank you for taking the time to chat about what you're experiencing. I appreciate you being so open with us all.
I'm sorry to hear that you are always in pain and fatigued due to having fibromyalgia. I imagine that is very difficult for you.
Thank you for also sharing about Mental Health Illnesses that you also deal with. I am just now learning about Schizoaffective Disorder due to one of my family members possibly having it. Is there anything that you can share on it that you feel comfortable sharing? I'm glad to hear that the medication helps the psychosis. I'm sorry to hear that your anxiety is something you are always dealing with and that you have intrusive thoughts. Are the thoughts connected to OCD?
How do you feel about not having a lot of independence and struggling with showering?
I'm really thankful to hear that you have supportive friends/family, and a psychiatrist! That level of support is definitely super important. Dogs/pets can be such a great emotional support! I have two myself and I can't imagine my life with out them honestly.
I'm really thankful that you felt comfortable enough to share. We do also have a Disability Support Room where you can go and chat to other members for support too!
@beck1
I have tourette, ptsd, social anxiety, etc etc...
@iwantacoffee2009
Thank you for sharing that you have tourettes, PTSD and social anxiety
What helps you cope when things get hard?
@beck1
When it gets overwhelming, going outside, doing breathing exercises and listening to my favorite music It helps with all of them
And when I feel that a tic attack its coming, I go to my room, close the door and I try to protect my head, or in case that I'm not at home, I go yo the bathroom and sit on the corner, and cover my head with my hands
@beck1
I have RA and HT. They are autoimmune disorders. It mostly affects my joints. It is known as a silent disability as it is largely invisible to anyone else - you would be unlikely to offer me a seat on the bus, for example. In my case the disease is reasonably controlled by medication but I still deal with chronic pain and the side effects of said medication. I'm lucky that I have a fairly high pain threshold, but every now and again I'm reminded. For example, a few years ago I pulled a muscle in my back. My employer got a standing desk for me, but I found I was unable to use it because my feet couldn't tolerate standing for more than 10 minutes. Which led me to recognise all the situations in life where I was managing standing by pacing. I now find a way to sit and sod the people who think I'm lazy.
I'm very lucky to live in a country with good public health care, but the thing I would like others to know is the unseen costs. Before I was diagnosed, I had £25 per month after bills for extras - a pot of paint to decorate my flat, a new item of clothing, a weekend camping etc. After my diagnosis that was no more. It went on all the little things that became necessary - petrol to get to appointments, better quality gloves to protect my hands from the cold, more expensive footwear because my feet could no longer tolerate basic lines etc etc.
You know, when you walk with a stick, you can't put your hands in your pockets to keep them warm. The little things matter.
I'm very lucky that I'm not only still able to work, but I have moved into a higher paid position so I no longer have to worry about afording these small things that make life do-able. But I remember for those who still find themselves having to chose between a treat and managing the consequences of thier condition.
@Clio9876
Would you like to share what RA and HT is? I believe I know but don't want to assume 😊
I'm sorry to hear that you deal with chronic pain and side effects of medication. Thats difficult.
I think you have come to a healthy place in thinking where you are finding what works for you regardless of what people think! Thats really good to hear. People may not always understand. But those who care about us always want the best for us.
I'm glad to hear that you have access to health care! Thats definitely very important.
Having disabilities can get very expensive at times. But I am thankful that you have found things that are helpful for you.
Thats so awesome that you have moved into a higher paying position! Congratulations! That is honestly such an amazing achievement.
@beck1 hi I'm lola. I'm 22 years old. My spine is broken and can't be fixed properly, my legs became dead weights and they had to amputate them. Some of my fingers got cut off.😞 mentally diagnosed with depression, anxiety emotionally unstable and ptsd. I'm very lucky to live in a care home. Where I'm safe and well looked after. I get free healthcare and 24 hour care. So I'm very very lucky. However the scariest things for me is knowing that I will most likely become completely paralysed one day (only half paralysed rn) and it'll be a miracle if I live to 40
@Tinywhisper11
That hurt to read, Lola.
It is not your fault, not at all...but da#n, it hurt to read that. 😔
Wish there was something I could do to change your future, & make it a better one. But like all of us, I am not a god...not even close. All I can do is think of you. A gesture as useless as it is futile.
Be as well as you can, girl.
@slowdecline48 awww your words mean alot ❤ so you did something you cheered me up with kindness🤗 dw about me I'm doing ok ❤ gives you giant tiny hug ❤❤
@Tinywhisper11
Hey Lola! It is always lovely to see you both on the forums and in the room!
I'm sorry to hear of all the struggles that you have had in your life. I can imagine dealing with multiple amputations is hard. What ways do you cope with this?
I'm very happy that you are in a care home and you're well taken care of. This is super important and something you absolutely deserve!!
I can imagine that its super scary for you to think of becoming completely paralysed. In those times, how do you deal with those thoughts.
@beck1 I try not to think. Bad thoughts can go away, cause I'm living for now not the future ❤❤
@Tinywhisper11 love you lola 💕🤗
@Optimisticempath love you moree empath ❤❤❤
@Tinywhisper11 hugs lolaa🥺🤗❤💕
I'm OneErased, prefer Erased. Many ask about my username, but it's as fitting for me as can be, really.
I was born mute, which doesn't affect my life that much. I'm also diagnosed with a serious form of anterograde amnesia, some other serious cognitive issues regarding learning and concentration, chronic pains, chronic migraines, chronic nightmares, BPD, C-PTSD, etc.
The first 16 years of my life were traumatizing and miserable. At age 16 I got into an accident that kept me hospitalized for almost a year. The brain damage from the accident caused the rest of my disabilities, anterograde amnesia being the worst of them. I can't really create new memories, so I live in this existence that doesn't really exist. I have little to no memory of the past 20 years - if I close my eyes and don't concentrate on the stuff I have now, it's like those 20 years never happened. Thus, no matter how good my life might get, I'm always stuck in the worst times of my life. Literally. Wish I'd forgotten this years too.
It's not an easy thing to explain so I won't bore anyone. But everyday life is a struggle with seven journals I gotta keep up with, plus all the other tools that keep reminding me that I'm not 16 anymore and my life's completely different than it was. Lots of routines and lots of notes etc., cause otherwise I'd just be lost all the time. I still fight this feeling of not really existing to myself. I'm alive and I have all those journals and tools to prove that. But all I really am to myself is words on paper. I don't even recognize the words. So, actual existence is a tricky thing.
I've always had little support through it, and lost some of that support to death along the way. But I do currently have at least some support. I finally found a shrink that specializes in memory issues so that's helped quite a bit. And I have my partner, I dunno how I got lucky enough to find one. A few friends I can talk with time to time. I do wish I had more ppl to talk with, but you live with what you get.
I would like to educate ppl on invisible disabilities. I have plenty of scars from my accident but I still hide them cause getting over stuff is difficult. I used to do the same with my memory issues and everything too, fearing the attention I'd get. But it's important stuff to discuss and for ppl to know, not everything can be hidden as easily as scars. And ppl pay even more attention when you keep quiet about those things that can't be hidden.
Gotta say, for a lifelong mute with severe memory issues you have quite a vocabulary. You must've done plenty of reading...
@slowdecline48
I've only really gotten to reading in the past years, actually. I guess when your communication mainly consists of words, and you write all those journals, you kinda learn the vocabulary on the way.
Hey @OneErased . I'm really glad you took the time to reply to this thread. Its important that everyone has a chance to share their experiences and I'm happy that you were able to.
Thank you for sharing that you were born mute and that you were diagnosed with Anterograde Amnesia. I am still learning about both but definitely want to learn as much as I can 😊
I am really sorry to hear that the first 16 years of your life were incredibly difficult. You didn't deserve to go through that trauma. I'm sorry to hear that you had to stay in the hospital for a year too. It sounds like you have been through a lot in your life.
Not being able to create new memories must be very difficult. How do you cope with this?
Keeping up with seven journals every day sounds very tiring. But I can imagine that is helpful to see what you have done in your day and help you understand your life a little more.
I'm glad you have some support right now. That is very important. I'm glad to hear too that you have a psychiatrist that specialized in memory issues. Have they been helpful in giving you tips and suggestions?
Its awesome to hear that you would like to educate people on invisible disabilities. Its something I really hope that we can all do more and more through this community. Many people don't have an understanding of the basics of what an invisible illness is so it makes it hard for those of us who live with them every day.