Hi, my name is Elaine. I have had 5 strokes, 4 knee surgeries, & have been diagnosed with PTSD. I have Stage 4 osteoarthritis. To look at me, you would not know anything was wrong with me, but there is. When I travel, I can’t sit in the middle of the aisle of the plane. I also have slurred speech & my balance is off, because of my strokes. People stare at me, assuming I am drunk.
I have osteoarthritis in both knees I have rheumatoid arthritis in my hands. My knees are so bad that I have to use a wheelchair when I’m out and about. I have fallen a couple of times which is scary because I can’t get up by myself because I’m morbidly obese in with my knees being bad.
Hi @ekcupp. Thanks for sharing and bringing up this topic! I know exactly what you mean.
As you can see in my intro family picture, my wife looks like a healthy 29 year-old. But she’s got chronic pain throughout her body and in hear feet, sometimes knees, which are issues that are invisible.
What we’ve learned is that in public places, it’s to our advantage to help people understand she’s disabled.
She has a 3-legged cane that folds into a stool.
So even if she doesn’t need the cane on a particular day, she brings it with her in public because:
- in case she does suddenly need it unexpectedly, and
- so that people will have a chance to treat her with compassion
We can’t change people to make them care or be nice. But we can give them the chance to choose compassion by making our invisible disabilities more visible. Whenever that’s practically possible.
This helps us and those around us.
@myjustgreatstuff That sounds so challenging. What have you done when you’ve fallen without a companion to help you up?
Sorry to hear that you are going through these struggles living with a mobility issue is not easy. Prayers that you don’t fall anymore. This is why u should always be nice and kind to people you don’t never know the battles they fight daily.
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My disabilities are also invisible most of the time. I have chronic pain in my hip and lower back area, I do have a limp if I’ve walked to much and really flared the pain. I also have neuropathy in my feet and have really been struggling with it. I’ve fallen numerous times at home and in the shower. It’s hard to drive because I have no feeling, but unfortunately my husband’s license is suspended from things he did 10 years ago. He’s trying hard to get it taken care of because I know before too long I won’t be able to drive at all. I cringe when I have to use handicap parking, people stare all the time, I guess cause I’m young looking and they don’t see what’s wrong.
Hey @harmony29. What do you think of the idea of bringing a cane? As a “just in case” and as a way to make your invisible disability visible so others have a chance to understand? For my wife, it’s worked well but I’m curious what you think of the idea.
Actually my husband got me a pink wheelchair yesterday, so now there will be no looky loos or should I say there shouldn’t be! My foot doctor said I need to realize I cannot do what I did last year and if I still wanted to be able to go that using a wheelchair will really be the route I need to take. I’m really excited as it’s a really good wheelchair, it folds up small for our small trunk, has the breast cancer pink ribbon (my best friend is going thru breast cancer right now) and has little compartments to store things. We don’t normally take anything in the park but our phones and passes/I.D. I do have a cane for days that I don’t need the wheelchair, just have to get my pride to take a backset and know I’m doing what’s best for me.
Love the attitude. And big points for your awesome husband .
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I have Sickle Cell Anemia, it’s a blood disorder that sometimes causes unbearable pain. Last year I was diagnosed with heart failure and Gout. I am so young but my body has lived through 40 years of filtering blood that was damaging my organs. I have several prescriptions but sometimes I get really tired or out of breath and also sometimes I have the Gout flare-ups and it’s painful to walk. I don’t have a handicap license plate but I have use some other accessible benefits and every time I’m questioned and asked for proof of disability. I think it its so unfair and a violation of privacy like HIPPA for people to ask someone to prove their disability. There needs to be a stop to people harassing others with invisible illnesses.
Y’all talking about scooters, I’ve got a PRIDE GOGO SPORT 4W scooter that will literally break apart. shameless plug (ha! ) I can’t walk w/o it so it goes with me everywhere. Fits in the trunk of our Camry. I’ve had it over 5yrs but not quite a full 10 yet and the only thing that I’ve replaced or had trouble with is the battery. Seriously if you need one and have a caregiver, I highly recommend it
I feel y’all on that falling! Went ahead and changed my name to “Grace” I fall so much! It’s always been an embarrassing time too. Can’t be when you’re home just you and your husband. Oh no! One time I fell and broke my own toe! Yeah my fool self sure did I tripped and somehow I broke it in the parking lot at the movies. Felt like such an idiot. I get dizzy really easy. Part of my illness but I’ve learned to live with it now and most of the time I can catch myself now. Let’s see what’s it called have I got. Idiopathic Intercranial Hypertension which is my main illness had to look that up the spelling. It’s like having a tumor but you don’t that pseudo part. Basically my body produces too much spinal fluid and the fluid is putting pressure on my brain, both of my optic nerves and what’s that called to hear with? No not ear don’t be surprised if I do forget that word bc this is the most irritating frassin part of this illness! UUUUUUGH!!! Can’t remember. Irritating to have a 4yr college degree and remember how to spell 3 and 4 letter words sometimes. I’m only 44 but it feels like I’m 80! Take more meds than most Senior Adults (my MIL friends) Because of this illness I was given Diamox (a medicine that I was allergic to) and it made Fibromyalgia that was dormant in my body come forward. Fibro has been THE WORST! Debilitating some days where I don’t want to move anything bc it hurts so much. I also have RA. Raynauds. Sight and hearing is slowly becoming worse. Memories even more so. Degenerative bones. Bulging discs in my spine. Migraines OMG the migraines!!! I’ve had a migraine last months at a time. Looking at me you think I eat everything in sight but no I eat like a bird. My meds blew me up over 100lbs over the last 8yrs. Feet swell. Legs swell. It all hurts nonstop dull pain I’ve come to accept and ignore bc I can’t get rid of it. Silver Lining though? There’s always a silver lining. I don’t have diabetes! (PTL!) If you look at me, I also look like I’m just a regular plus size person.
Hi! I am part of the invisible disability club too! Not that I wanted to be but I feel that no matter what part of your disability is invisible we have all faced the same challenges and discrimination. I have Myalgic Encephalomyelitis…which is a mouthful and hard to explain…but I’ll give it a shot.
Picture the worst flu or virus you have ever had…we’ve all been there…the overall crappy feeling, with hot and cold chills that make it impossible to get comfortable bc you start out freezing so you pile on the blankets and just about the time your teeth stop chattering and the shaking stop, you are instantly pouring sweat and kicking the covers off…rinse and repeat. The overall achy body that feels as it you move your body will fall apart…even after the fever goes away. The hazy brain and words that don’t come out bc your too sick and tired to find the right one? I know you’ been there. . Then bc we are adults we usually go to work as soon as allowed bc we are responsible and sick time is at a premium. But our body is still fighting infection so we tire easily but push through it bc that is what we are taught to do so that by the end of the day you feel worse than ever? Most ppl endure bc they know it will only last about a week but this is what I go through every single day.
I also have Autonomic Nerve Disorder…your autonomic nervous system controls everything you don’t think about…sleeping, organ functions, heart rate, metabolism…etc etc. so basically my brain sends weird signals or in some cases no signals that should be controlling my internal function. I don’t get sleep signals most nights…72 hours up is my current max, and my stomach tells me Im starving AFTER I eat or I get no signals to eat so I forget for a day or so. I can’t regulate my temp…so if I get hot I will stay hot for hours…same with cold. I could go on but you get the picture.
Lastly, I have POTS, Lyme, Fibromyalgia, Neuropathy, PTSD, and Migraines.
I use a walker for significant walking or if I will be standing a while. And will be going to a wheelchair soon. I hate the looks I get from using a scooter or parking in handicap spaces bc I look fine but inside it’s all falling apart. I want to live as full of a life as I can but my body gets in the way. I’m hoping this site helps me take new adventures with my children ages 2 and 5 but disability doesn’t make room for extras most days. I’m excited by the possibilities before me and getting to know all of you better.
I too have a invisable disability and people just think I’m fat and lazy. I have degenerative joints meaning they are just wearing away. It’s hereditary on my mom’s side. I used to be healthy but once this took over my life and I pretty much became sedintary I have gained weight. I do have a handicapped license but still get looks. I have had a Pride scooter for about a year now and that has changed a lot. I highly recommend one! I comes apart and fits in trunk. The medicine that you can take flares up my chronic vertigo which is just as debilitating. So I choose the better of two evils. Falling down is my worst worry. I fall all the time without warning so I just don’t go anywhere that I can’t take my scooter. Any steps at all forget it. Sadly I miss many fun opportunities but my husband is very compassionate and understanding. I will continue to live as full of life as I can. Also to be a guinea pig for the next medical trial. I’m on a mission to prevent anyone else having to go through this!