Transitioning into Adulthood with Severe chronic illnesses/disabilities

Transitioning into adulthood with severe disabilities/being low functioning can be tricky because society is not built to cater to our needs so that we have the same opportunities as able bodied people or even high functioning disabled people. Things like going to college, getting a job, a house, first car  or living independently are often times not within our reach no matter how badly you want it.

It can even make you feel like somewhat of a child because you are not fully capable of taking care of yourself and you might wonder if there’s really any difference between being a disabled child and a disabled adult. But there is, let me share with you what I have learned!

1#1.  Advocating and being responsible for your medical needs and accommodations

Once you turn or are about 18 you are responsible for making sure you have insurance, scheduling appointments, getting referrals, prescriptions and so on. It can get confusing at first you may even forget what was when but you’ll eventually get the hang of it. Your also responsible for making sure you get the accommodations you need when you’re with other people or outside if you still have the ability to leave the house.

     #2. Letting go of the “path of life”

You may find your friends getting jobs and going off to college or getting their first cars when none of that is really possible for you and you’re just spending most of your days in the house agonizing in too much pain to do much of anything.  I’ve said it before and I’ll say it again age milestones have the price tag of health and if you have insufficient funds you’re going to miss out.  When you transition into adulthood with lifelong disabilities you have to learn how to carve out your own path of life and figure out what you want to do since you can’t work.  You can read more on what to do with yourlife when you cannot work here.

 #3.       Exploring your abilities/independence.

Since you are not on the same path of life that an abled person is you have to learn to appreciate your own brand of independence and success. It is no less than theirs; one thing I have learned to say is that no stride of mine is a small accomplishment. If I learned how to modify an activity like cooking or keeping my room clean then I look back and remember how I wasn’t even able to do it the way I was raised to do it, the “abled way” if you will.  Since our bodies function differently than a healthy person’s, we have to do things differently in order to achieve the same or similar results. Being innovative enough to find your way around a limitation is gaining back an ability that was snatched away from you and it is a powerful powerful feeling.

& when I fight through something I don’t think to myself. Oh I made it through the day I say I made it through the day with chronic pain, dizziness, fatigue and all the other health problems I have. Nothing is ever simple with severe chronic illness therefore no accomplishment is ever small. 

4.     

 #4. Remember that adulthood is not just about working and getting a car/house ect.

It’s also about being mature. There are plenty of people who have jobs and cars ect. and are immature on the inside.  You may not have those opportunities and that is not your fault and it doesn’t make you infantile to not be fully capable of taking care of yourself.   If you had the choice to take care of yourself then you probably would and you would probably do a great job at it too! You are an Adult with disabilities not a Child. 

You may not have those same responsibilities that they do, but you have some huge responsibilities yourself. Trying to take care of yourself with severe chronic illnesses is like working a second job.  Having a chronic illness in itself and taking care of 24/7/365 onslaught of pain and symptoms is difficult, then add in basic life activities that you may only be able to partially do in your good moments or days, preservation of mental health, coping, grieving, adapting and trying to form some type of life outside of your illness (because hey we’re still human like everyone else right?), scheduling appointments, keeping track of your illness and treatments. It’s a whole lot of responsibility.  

 #5.       Reassure your caretakers/parents that you are an Adult with disabilities.
 

 They can sometimes be overprotective or worried about you entering adult life so you have to remind them in certain activities when you need assistance that it is solely because your health is lacking not because your maturity is lacking.  Like for example if you need someone to go to doctors appointments or in general anywhere that’s a little while from home with you because you could become incapacitated at any moment.

 

  #6. Save your money!

  If you have no income and are unable to work, save any money that comes in whether it’s given as a gift, earned in a small task, or comes in from something like coin collecting.   Get a savings account so you can keep it all in one place.  Remember you’re an Adult now and even though you will most likely need to be in care for the rest of your life that doesn’t mean that you don’t need your own money. You can end up in light emergencies or come across important small expenses; you may even come across situations where someone needs a little money and you might have saved enough over the years to help out a bit. ( I want to add in here that when you do give someone money give them as much as you can but don’t give them everything because you will end up with absolutely nothing and being a person who can’t work that is going to take FOREVER to save back up. )

& in general if you can in any way be less dependent on others then you want to strive towards that because people are not always dependable, either by personality faults or unfortunate events like death....

  On a lighter note, being able to buy something without asking feels good.   You want to save your money more than anything because you don’t have a paycheck coming in and you want to create somewhat of a safety net even though it’s very miniscule it’s better than absolutely nothing. Occasionally go ahead and buy something nice for yourself but more often than anything just save, save, save.  

 A lot of abled people don’t understand this concept because they assume that since someone else is taking care of you that you don’t need money and should just spend any money that comes in on frivolous things, but life is not a game and you are not a child.   An Adult with or without disabilities should always have a savings; you never know what life can throw at you.

      #7 And to add on to saving be frugal! 

Check out your local dollar stores, discount, thrift stores and Aliexpress. Once you dive into frugality you’ll feel a million times more independent. Just collect four quarters and get a new thing-a-ma-bob at the dollar store?? Hell yeah!   You can read some more of my articles on frugality in my topics tag.  Being frugal has opened up such wide doors for me, when I find stores that items are so cheap I’m able to buy nice things for myself like 40 cent gauges without panicking that I’m spending too much, or get my friends and family gifts like cute jewelry for 50 cents or 1 dollar and get important things for myself like a $15 wheelchair when I had a relapse of health or a cute golden foldable cane for $6 I feel more in control. Frugality can work for both frivolous and important expenses.