“In 20 years of illness, I have lost count of the people I’ve met who say they wished they had stopped working earlier. I have never heard someone say ‘I wish I kept working longer!’
“My attempts to work only worsened my severity level. I did terrible damage to body while trying to work very long hours in a demanding career. Once I stopped working, my symptoms never improved.” – Marigold
Deciding to Apply for Disability
The decision to apply for disability is a really hard and really emotional decision for many of us. Every person is different and there is no wrong or right answer, but most of our readers report that they waited too long and wish they made this decision sooner.
At the end of the day, this is a decision only you can make for yourself. Your doctor cannot make it for you. Your employer cannot make it for you. Your family and loved ones cannot make it for you.
Only you know how sick you are and what your body can handle and what is really the right thing for you. Probably the best thing you can do is just be honest with yourself, and listen to your own body, not to anything anyone else is telling you.
Should I Apply?
If you are asking this question, there is a good chance that the answer is going to eventually wind up being: “Yes.”
The question is how long you decide to wait, and if there will be any consequences to waiting (Will waiting cause you to get sicker? Lose health insurance? Become homeless? Burn out or overburden the people who support you?).
Things that Can Help You Apply
Below is a list of things that can make applying for disability a whole lot easier and increase your chances of getting approved. None of these things are required, but the more thing you have on this list, the easier things will be for you.
If you have some of these things now, but you may not have them forever, please don’t wait until you start losing these things!
💮 transportation to get to the doctor
💮 health insurance or access to medical care
💮 a computer
💮 internet
💮 a reliable phone
💮 a steady mailing address
💮 a friend or family member who can help you
💮 a doctor who supports you (or the ability to find a doctor who supports you)
💮 a way to copy, print and mail things.
What Else Helps?
In the dream world, it would be great to also have these things:
💮 friends or family members who are not burned out on helping you
💮 the ability to read and write things, or a friend who can help you
💮 the ability to make phone calls, or a friend who can help you
💮 the ability to leave your house and go to the doctor
💮 the ability to leave your house and go to medical tests
💮 the ability to assemble and mail papers, or a friend who can help you
💮 funds to pay for copies of your medical records
Losing Things
Having some the above things in place will help increase your chances of getting approved, and may help you take steps to get approved more quickly. The typical Social Security disability application takes three years, but there are things you can do to improve your chances of a quicker approval.
Once you start losing things on this list, it can become more difficult to get approved. If you lose the ability to have regular doctor visits, it may become very, very difficult. Some people get stuck in a downward cycle of spending years applying, unable to work, having no income, and losing the support they need to make the situation better.
If you still have some of the things on the list above, now is the best time to make good choices for yourself to create a more stable situation in the future. Some day you will look back and be super glad and super proud of yourself for making hard and good choices.
It’s also helpful to keep in mind that if you wait too many years after you stop working, your Social Security work credits may expire and then you may not be able to apply at all.
We’ve Been There
When you first become ill, you may find that many people show concern or care or ask what they can do to help or donate to your fundraisers or give you a ride or visit your house or offer you a place to stay.
That is going to diminish. Trust us. As months and years pass, people will get burned out or busy with their own lives or move on to helping other people. They will have kids, or leave the area or lose their job or develop illness themselves. Life will happen.
If you are chronically ill, you won’t have the same ability to just go out and make new friends or find new support people. As the amount of support you get diminishes, you may find it much harder to apply for help.
Don’t wait until you have no other options before applying for help. Apply before you are in crisis.
For the People You Love
If you are able to start working towards getting the services you need, this can also take a lot of stress and burden off the people who love you. It can help your loved ones feel less afraid for the future, and help you feel less helpless.
If you can’t do it for yourself, you might decide to do it for them.
Think About It This Way
A friend can spend two hours taking you to the doctor one day one time. Or a friend can spend two hours helping you apply for a disability transit program, and then you can get rides to the doctor every day for the rest of your life.
Don’t just ask your support people to give you money or bring you food or clean your house. Food and money goes away and by next week your house will be messy again.
If you have any offers of help right now, then now is a great time to use that help to try to get stable for the future.
Jasmine’s Story
“Three years ago I was told not to file for disability. I was told I was too young, and I would get better. Now I am far sicker than I was and going through the many steps of disability. I would be so much farther along if I had just filed when I was first sick.
“If you’re at the point of not being able to work, or missing a large amount of work due to illness, I would really consider starting the process.
“Applying for disability isn’t giving up. I very much believe that one day I will be well enough to work again and not need disability. Social Security has programs to assist you in trying to work in the future if you improve.
“Really wished I had listened to myself more the last few years. We have a meeting next week with a bankruptcy attorney.”
Special Note for People with ME or Chronic Fatigue Syndrome
For people with ME, physical activity can make your symptoms worse. Sometimes permanently. If you have this condition, please learn more about Post Exertional Malaise and please do not push beyond what your body can handle. Many of our readers became wheelchair-bound or bedridden by pushing themselves to work after becoming ill.
Changing Your Mind
Applying for disability is not an irreversible decision. If you do apply and then get better, that will be a happy day. You can withdraw your application any time. You can cancel your disability any time. Nothing bad happens if you get better.
Learn More
Only you know how sick you are, and whether you are able to sustain work, and what is truly possible for you. No matter what any one else is telling you (even us) only you live in your body and only you know what you really need.
Please Read This If There is Any Chance You Will Ever Apply for Disability…
“Many crisis points and traumas could have been avoided if I had filed sooner. I waited two years before filing, then it took another two years for approval, then several months for the first disability check to actually arrive.” – Dianthus
What Do You Think?
Please comment below with stories, ideas, questions or suggestions. Please let us know if any links on this page stop working.
Updated May 2019. If you found this page helpful, please share it with others by pressing one of these magic little buttons:
How to Get On 
Great post. All I’d add (as someone in a different country with a different benefits system) is that it can be incredibly hard to let go of things you can no longer afford. It must be more difficult still if you have a partner who’s also worked and studied hard to achieve a particular lifestyle – it’s easy to beat yourself up about how your illness is affecting someone else.
As someone who’s had ME for more than 40 years, and whose mindset is now shifting towards that of an older person, I’d ask you how many of those treasured things – careers, house ownership, qualifications, social status, nice cars – have either become a burden to sustain, or are irrelevant because you can no longer enjoy them anyway? The truth is that letting go of them can be an enormous relief.
Almost all of us fall victim to the mindset of modern Western society. We *need* stuff. As we grow up, we learn that the more stuff we have, the more successful we are as human beings. It’s as if things possess us, instead of us possessing things. And all this even though we know that we can take absolutely nothing out of this world with us.
Money can’t buy any of the stuff that people with ME really need. Better health, supportive friends, the love of their family (and their partner if they have one). You can find everything else you need – shelter, warmth, and enough to eat – for less money per month, often a lot less. You can find contentment there, too, because you no longer have to worry about maintaining all that stuff.
There are real losses, of course. Many of us are defined by our jobs or by things that we do, and we don’t know how to describe ourselves once we’ve given them up. But all the money in the world won’t help you learn to redefine yourself. It’s a journey of discovery that most people have to make anyway when they retire at the ends of their careers; some of us just have to have to do it a bit sooner than we expected. It’s not easy, but it’s a whole lot easier than struggling to hold onto an identity and a lifestyle that isn’t really ours to have any more.
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Wonderful post. Thank you.
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Gentle and to the point. Thank you
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How do I know I am getting my full disability? They take out insurance and that lowers my income right there help
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There are quite a lot of programs that can help with Medicare fees. hope something here helps:
https://howtogeton.wordpress.com/2017/02/01/how-to-escape-medicare-fees/
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One of the reasons people do not apply before they do and end up in total crisis is that they are LIED to by their doctors about how sick they really are, including what their diagnosis(es) actually is or are if more than one, if they know it and many times they do and are not revealing it to the patient…
Why?
I have heard the following from other patient victims most often when they asked WHY they were not told the TRUTH :
1. “Because your insurance won’t pay for the treatment…”
(And have been told by evil insurance corp. to keep their mouth shut).
2. “Because their is nothing we can do about it…” aka “Because there is no cure…”
(No cure is no the same as no treatment and too many people get fooled by this word play)…
3. “They thought someone else told you (like another specialist)…”
4. Or perhaps someone did tell the patient the diagnosis itself (name), but lied about how serious it is or what would happen to the patient long term…
5. There are/were conflicting opinions among doctors and they did not know how to resolve or just did not bother to try…
Or a doc may have missed something and then they aren’t going to confess because their lawyers told them to stay silent because they would get sued…
More reasons to get all the records you can on yourself as they happen, test results etc.
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