Having a disability is rough, no matter what it may be. It is hard whether you have one disability or many. I would argue though, it is much harder when your disability is not as obvious, or what are considered Invisible Disabilities. have multiple disabilities.
I was born with X-linked Hypophosphatemic Rickets (XLHr), which is a rare form of rickets (which is in and of itself a rare disease these days at least in the developed world). It causes bow-leggedness which throws off balance and alignment and further causes pain etc.
Growing up I had to wear leg braces to try and straighten my legs out and let me walk in as “normal” a fashion as possible. I was also on a battery of pills and had to go to Shriners every six months for bloodwork, kidney ultrasounds, and X-rays like nobody’s business. And because there are not a lot of cases like mine, and Shriners is a teaching hospital, I would often be paraded around to the doctors who were being trained and shown what my disease was like.
It was a bizarre experience, but it didn’t seem to me to be the case when I was young. Then I thought I was unique and it seemed cool. But oh how society will take your positive outlook and break it down leaving you a lump of self-doubt and self-loathing. But that’s a conversation for another day.
Over the years though things got progressively worse. Now up until I was 26ish, I could walk perfectly fine. I could take showers on my own, I could drive. There was nothing I was unable to do. I couldn’t walk around six flags without sitting down a few times and feeling like I was going to die, but that had always been the case.
It was after my gall bladder surgery that things kinda went into a downward spiral at a much faster rate. Now, part of having XLHr is dealing with symptoms of it that you would not immediately tie together. Some of those symptoms are Hearing Loss, Intense Bone Pain, Limiting of Range Of Motion, and Depression just to name a few. A lot of these symptoms flared up after the Gall Bladder removal debacle.
It got to the point where I began to experience greater and greater muscle atrophy and weakness, culminating in where I am now, where I can not walk anymore. I can stand and transfer from bed to my Wheel Chair, or the Wheel Chair to the Car, etc, but not unassisted and just for a minute or so.
The limiting of range of motion has killed my ability to drive as I can no longer turn my head enough to clear blindspots etc. It has also made me dependent on my husband to help with Showers etc as I can no longer do them unassisted. Getting dressed is the same. I can no longer maneuver the kitchen well enough to cook anymore unassisted. So anytime I want to make my amazing dishes, the husband has to be my hands now.
To say I am a recluse now, or a hermit would be a positive. It’s not accurate. I wish it was as it would imply I moved freely within my own home. But this is not the case. I am bed-bound 99% of the time. I see the four walls of my bedroom for weeks at a time unless I have a doctor’s appointment or a commitment I have to attend in person.
When I do leave my house, my anxiety is through the roof. People stare and make their shitty comments. Or they will walk in front of you while you are on a scooter trying to not run into anybody. Then they will look at you like you are the inconsiderate asshole. More often than not these days, I place my grocery orders through the app or make a list and send the husband solo. I just can’t handle the public anymore.
Now people very close to me know this, but some who have not dealt with me in some years, or who know me through Video Games or various online communities I am in, often do not. And even the people who know somewhat the situation don’t fully grasp the hardships I face, and that my husband faces. Despite the severity of my disabilities, the government has denied my disability claims several times over the years. So financially we have struggled.
Additionally, our home is exceptionally inaccessible for handicapped people. So my mother-in-law and I who need accessibility, are struggling to exist in a house that no longer meets our needs. Then if we leave the house, outside of the bigger cities of Texas, we are met with many of the places we need to go being inaccessible to us. So rather than being able to just hop up and go places, we have to think “Well is it wheelchair friendly?”. And the answer more often than not is unfortunately nowhere here.