Living with a disability is frustrating but eventually, you become used to it because it’s everything you know but what’s even more frustrating is when you aren’t disabled and become that way! Anyone can become disabled and all it takes is to get in a horrendous car crash or to become ill for your life to be forever changed! Disability is normal for me because I don’t know what it’s like to not be disabled but for someone who becomes that way it can be very overwhelming and stressful. Your life will never be the same because you have to relearn how to do even the simplest tasks that don’t seem like they should be that hard to make your life easier. I have been living with a disability since the day I was born and have had to work through many challenges.If you are struggling to cope while you are newly disabled here a few simple ways you can make your life easier.
Give yourself extra time- It doesn’t take me that long to get dressed to go somewhere and look presentable but it does take me longer than an abled person. I have to do a lot of time-consuming things to take care of my health that most people never have to think which takes more time in the morning than in the evening. In the morning I can’t pee in two minutes like most can because my bladder is fuller than it normally would be and things often get stuck making it so things take longer. I always wake up a little bit earlier than everyone else because stoma issues are a common problem in the morning and if I don’t give my body enough time for these issues to happen they will occur twenty before I need to be somewhere. There is nothing more annoying than having to cancel a fun trip with my friends because of medical issues I could have stopped by waking up earlier! If you have been feeling rushed to get out of the door try and set an alarm twenty to thirty minutes earlier to give yourself more time!
Build a community- If you disabled one of the best pieces of advice I can give you is to build a community! Whether you are a veteran disabled person or a total newbie you can always learn more about living with a disability from your disabled peers than your abled ones. I give abled people credit for trying to help us cope but unfortunately your not going to get better tips from people who haven’t been through what you’re going through. Find your tribe because there are so many online communities specifically for different disabilities that can help you cope!
Learn how to fall-There is a right way to fall and a wrong way to fall and falling flat on your face without even trying to catch yourself is the wrong to fall. When you are physically disabled you are going to fall more than abled and the trick isn’t to try and not fall but to learn how. There are so many people both abled and disabled people that fall and get terrible injuries because they don’t know how to fall correctly! Always put your hands out to brace your fall whether forward backward, or sideways because injuries happen when people let themselves go and don’t try and catch themselves. Knowing how to how to fall doesn’t mean you will never break a bone but it can lessen the severity of an injury when your prepared. I fell not that long ago during my hip recovery which could have been really bad but because I knew how to fall I only scraped my back and no damage was done to my hip.
Asking for help is not weakness- When you become newly disabled sometimes it can be hard to accept that you can’t do everything by yourself anymore and that you may need some assistance. Don’t be afraid to ask for help because it’s okay if you can’t do something on your own and need a little help. Asking for help is not weakness but it’s strength because it takes a strong person to realize that you can’t do everything on your own and need a little extra help. People usually will be more than happy to help when you are struggling and if they are not then that’s their problem, not yours!
Try and not blame yourself– For basically my whole life I did not get a single headache or migraine until a few years ago and I started getting them regularly. I knew I was prone to them because of my Hydrocephhalus but it didn’t become a reality until I was in constant pain. In the early days of my pain, I become angry and depressed and constantly wondered why this happened and blamed myself for my pain which only caused me to become more angry. Disability and sickness happen for reason even doctors can’t explain so you can’t go around always blaming yourself and asking why. Practice self-care and surround yourself with people that are also going through this because they might be able to help you. My community is what got me through these feelings so I was able to learn to cope and accept my pain.
Don’t take things personally– When you are disabled you will face constant rudeness, staring and ableism that it’s frustrating that we have to put up with this. I don’t notice when people are just a little rude and insensitive but when they start to attack my disability that are so beyond rude it’s hard not to lose my marbles! As a disabled person, your going to run into people that think they are entitled and will curse at you when you don’t give them your full medical history. We live in a society where people don’t think before they speak and are generally unkind when you don’t give them the information they want. I am all about talking about my disability but and educating people but as soon as I feel like your mocking you that is where I draw the line and will tell you it’s none of your buisness! If someone is rude try and just walk away and not take it personally because the worst thing you can do with someone who just insulted you is pick a fight!
Learn to rest- As a disabled person, you don’t have as much energy as your abled friends because we are bodies are built differently. There are many activities I can do with my abled friends but because of my disability I can’t do them as quickly as they can and that is okay. Don’t try and be as fast as everyone else because everything doesn’t have to be a race but instead learn how to rest to avoid burnout. Disabled people are just not wired to do as much as abled people and your only hurting yourself when you try to live your old life.
Utilize assistive devices– There is nothing fun about going to a birthday party or a five-minute Target run when you feel out of breath the moment you get there. If it feels like you are barely making it through short events and your totally exhausted after being out for twenty minutes then it might be time to consider some assistive devices like a wheelchair or a pair of crutches. Assistive devices can make these events possible and you shouldn’t be ashamed to show up in your wheelchair because literally, everyone uses them so you probably won’t be the only one and who cares if you are! People that don’t need them still ride in them because wheelchair races are fun! There will always be that one person who will always have something negative to say about your disability as in life but in my experience, most people think they are cool and will want one!
When you are disabled your whole life you get used to your disability and coping is a tad bit easier because being disabled is all you ever know but when you suddenly become disabled it’s a little harder. You are not used to not being able to do things like veteran disabled people are so it can be quite a shock for you to accept these changes. I consider myself lucky because I have been disabled my whole life and haven’t had to go through the acceptance period of being abled and then suddenly having a disability. I can’t even begin to imagine what it would be like to do something and then all of a sudden lose that ability. I would much rather never be able to do it at all than to suddenly lose that ability because for me that sounds way more frustrating than anything else! These are only a small fraction of things I’ve learned that have helped me make my life easier while living with a life-long disability and there are so many others that I couldn’t possibly put it all in one post. If you are newly disabled and struggling I hope these tips helped and if you have any questions please leave them in the comments below.
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These are some fantastic pieces of advice for anyone new to the world of any kind of disability, chronic illness etc. Where you’ve mentioned finding your tribe, I’ve personally found the online realm to be fantastic in this respect. The chronic illness/disability community is priceless. Learning to rest or pace still frustrates the hell out of me. I still struggle with guilt and it gets in the way every single time. Considering there was no help or support of any kind when I first had health issues age 19, let alone when my health truly went down the toilet age 26, I think posts like this should be made available to all the newly disabled and diagnosed to give them a little guidance and hope. Fab post!
My Rockin Disabled Life
Thank you and I agree that the online community is great support for the disability and chronic illness community. I often find it difficult to get the same kind of support I get online in real life. Guilt is something I often struggle with which bugs me because I know I shouldn’t feel this way. Learning to rest is something I am not good at because before chronic pain I was very active but I am trying to learn to slow down!
Wow what brilliantly written advise. Your so right that able bodied people try to understand but can never truly get it. I was a carer for disabled children and then adults I truly thought I understood, It was a shock the way other people reacted and made me very cross. I would love sharing all the positives with people about my job and the joy helping someone enable themselves to do things able people can do on a whim without forward planning.
So when I discovered I had a degenerative spinal condition in my late 30’s I thought I understood. I really didn’t. I think that made it even harder. Five years in I lost my husband of 30 years who couldn’t handle me being disabled let alone using a power chair. He also got custody of my kids because I had a breakdown over it all. I didn’t want to be here and was suicidal and needed constant care for a long time.
I’ve had amazingly kind and amazingly hideous behaviour towards me because of my disability.
I have a lovely able bodied partner now I’ve been with for two years. Nothing phases him and he is truly amazing. I didn’t see myself ever having another relationship. So I feel very lucky about that.
I wish I’d had this to read when it all started though it would have helped so so much. Thank you 😊