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I’m not trying to be discouraging or to tell you not to apply.  I have been supported by SSDI(social security disability insurance) for well over 15 years, and I know that my quality of life would be much worse if I were not on this program.  

What I do want to do is give you some perspective on the psychological effects of applying, and help you be prepared for what it takes. Applying for disability is not an ‘easy way out’ of working, it is a challenging and stressful process that can take years to be determined, and there is no guarentee that the decision will be in your favor.

‘Disability’ isn’t the program name

The programs(SSDI(Social Security Disability Insurance) and SSI (supplemental security income)) provide a steady and reliable source of income for people who are too disabled to work. 

For the federal government, ‘too disabled to work’ means that when you apply you are unemployed and unable to maintain a job.

Once you are on the programs, they expect that your earnings will remain under Substantial Gainful Activity(SGA).  In 2018, SGA for non-blind people was $1180/month. In 2019, SGA for non-blind people is $1220.

SSDI coverage is based upon your work history(you are eligible if you have earned enough work credits through taxable employment, and your monthly check is based on your work history), and SSI coverage is lower and based upon financial need and lack of resources(you need to prove that all your assets combined are worth under $2000).

Both programs supply insurance coverage. SSDI provides Medicare starting 29 months after your eligibility began(now it often takes longer than that to get approved), while SSI provides Medicaid coverage as soon as you qualify). You can apply to both using the same form.  They will make the determination if you are eligible based on the information you provide.

link for social welfare guide

How it works

Once you apply, you shouldn’t work, so you are unable to legitimately earn an income. Working at all, in any capicity, will likely lead to be denied benefits.

woman sitting behind a window, waiting
Once you file the paperwork, all you can do is wait.

The SSDI process takes so long at this point that not hearing much of anything for over a year is commonplace.

You should get an automated message in the first month or two, telling you if you are ineligible for SSDI, or SSI, based on your income, but otherwise, it’s a long wait.

If you are initially rejected, you can file an appeal if you can identify an error they made.

Apparently, things are so backlogged that even once a decision is made there can be up to six months between the decision and receiving your first check.

It’s a very challenging position and one that is likely to lead to you needing to liquidate any assets you might have(if you have any).

You likely will also need to apply for other social welfare programs to help you survive until your application goes through.

These programs are designed as safety nets, but the way that the whole process is handled doesn’t feel that way. The employees at social services feel more like gatekeepers than helpers.

There are times you may spend hours waiting to talk to somebody or you may be talked down to by people involved in administering the systems.

Like many government forms, the wording can be confusing, especially if you don’t fit the assumptions they make.

There are few worse feelings than spending hours waiting to be seen, then emerging five minutes later with a list of the documentation you need to get – so you can get back into the line again and hope that it’s right now.

Things have improved somewhat, as now there are more often options to be interviewed by phone, rather than in person, which reduces a lot of the stress, but that likely varies by state and possibly by county – as well as by program.

Applying for disability requires inner strength

Making the decision to file this paperwork is an act of acceptance, and I would argue that it also is an act of bravery.

It is you making the conscious decision to admit that you need help.

It is you acknowledging your own physical, emotional, or mental vulnerability.

There are a lot of people out there who look down on people on government benefits, who refer to us as lazy or entitled.

We aren’t.

We’re simply doing the best we can to take care of ourselves and our families – and sometimes that means admitting that the problem is too big for you to solve alone.

link for social welfare guide

I need to tell them what?

child with look of surprise, hand over mouth
There are a lot of things you need to put in your application that you just don’t want to think about

When applying, you often need to not only admit to having trouble doing activities of daily living, but must describe, in detail, why you can’t do these things. 

Anything we leave out, its assumed that we CAN do, and can be a mark against us as we try to prove that we are too disabled to work.

Most activities of daily living are things that we expect children to do on a regular basis.  If you need help with toileting, for example, you are admitting to having less control than a three-year-old in that aspect of your life.

The questions they ask dig into exactly what you are and are not capable of, and there are almost no ‘guaranteed ins’ – there is no one thing you can say on the application that guarantees that you are eligible.

If you say one thing that might imply that you aren’t ‘disabled enough’ that can be enough for them to refuse to support you.

Writing anything untrue might be interpreted by the government as committing fraud, which has serious legal repercussions, so you do not want to embellish, and many of us have good and bad days.

You need to write about your worst days and describe, in detail, all the things that you can’t do, and, to some extent, justify why you can’t do those things.

You need to actively argue that you can’t take care of yourself.

You need to make yourself sound pathetic, without lying in any way. They are also unlikely to believe what you tell them unless a doctor agrees.

Writing things down on paper forces you to recognize the reality of your situation.

Applying for disability benefits
is quite an emotional balancing act

You need to write all of these painful details convincingly to have the best chance of getting the support you need.

You need to share with them every single doctor you have seen since your injury or illness and give them full access to your medical history.

In some cases, this means getting details on the worst experiences of your life, and possibly ending up reliving some of those worst memories

You also need to find a significant person in your life to confirm this by writing their own statements about your ability to live day-to-day.

It’s intimate, and best done by somebody living with you who sees you at your worst.

This means, to get disability, you not only need to relive your trauma, but you need to get somebody who is likely already helping and supporting you a lot to also report on intimate details of your life.

What’s the problem?

You need your doctors to agree you are disabled and share their information in such a way that it’s convincing. If your doctor doesn’t believe you are disabled, you don’t have a good chance of getting on any of the disability programs.

Focusing on these failures and weak points in your life leaves you feeling more vulnerable, and isn’t exactly good for your self-esteem either.

By detailing these issues and limitations, you are also reinforcing those negative beliefs to yourself, leaving you more open to feelings of failure, depression, and anger, especially at yourself.

woman huddled on dock looking at water
Applying for disability coverage is a lonely thing.

This negative frame of mind is likely already one you are struggling with due to the injury or illness that led you to need to apply in the first place!

If your doctor’s office doesn’t respond to their request, you get a letter from SSDI asking you to remind your doctor to get their job done.

This letter generally also reminds you that if they don’t hear from the doctor, they’ll make their decision without that information.

It’s a lot of work, and it’s all on you.

And the threat hangs over you that if you don’t get that information in soon enough, or you can’t get your doctor to do their job either, they might decide you aren’t so disabled after all.

You need to be organized and planful enough to get all that information gathered, reported, and into them, but still convince them that you can’t take care of yourself!

It’s a lot of stress and pressure, during a time when you already are under a lot of stress and pressure and are at a very weak and vulnerable point in your life.

So why apply?

I applied because there wasn’t a better option. You likely are considering applying(or have started the process) for the same reason: there isn’t a better way.

If you cannot work, and cannot hold a job due to a medical condition, this is the solution.

If your mental health or physical health(or the combination) are so severe that you can’t support yourself – you can’t work and may need help with those activities of daily living I mentioned above, then applying for disability is the right thing to do.

The good stuff

There are good things about the programs.

They do provide you health insurance, which is vital for those of us managing severe health conditions.

They do provide a regular monthly income(much better than no money coming in at all).

That first check is likely to be pretty decent sized, as it is back pay from the moment they believe your disability began.

Applying for disability may eventually
land you on relatively solid boards, but
the first steps are very challenging

If you are eligible for SSI, that program makes you automatically eligible for SNAP and Medicaid, as well as the monthly check.

Basically being on these programs is one of the few ways, as a person living with a disabling condition, that you can be independent.

It’s the way you get the medications and treatments you need to stay alive(or have a better quality of life).

These programs are your primary shot at freedom after the world becomes too much for you to manage.

What can I do, then?

Look at your situation.

Can you work with what’s happening now?

If your answer is yes, can you keep working, or are you already just barely making it?

Then think about your diagnosis(what you have) and prognosis(what’s likely to happen next).

facing a road that proceeds in both directions with a yellow sign pointing both ways
Think about your options, and pick the path that you think will help you most

If your condition is highly likely to get worse(a progressive disease), then you want to know about how quickly the changes are likely to happen.

If it’s something likely to get better(a broken bone, a treatable illness, a chronic condition that you can learn to manage), you need to have an idea of how much time you need to heal or adjust, and how much better it might get.

The rule of thumb is that if it’s been over a year, or your doctor expects it to take over a year to manage/control/adjust to it, then it’s time to consider applying for disability.

If there is a lot of uncertainty, you could start the application process and see what happens when they review it. That does potentially give you an earlier onset of disability date, but that also means all the emotional trauma I mentioned above when you may not need to do it.

Given how cumbersome and tiring the application process can be – and how detrimental it may be to your mental/emotional health, you do want to spend some time really thinking about your work, employment, and income options before you start an application for SSDI or SSI.

Once your application is started, you also want to view getting your coverage as your job, because in all honesty, that’s what it is.

Final words of advice

If you need disability coverage, it is there for you. The programs are very narrow in their focus(you are only eligible if you are disabled AND cannot work).

The application process takes a long time. SSI is often a bit faster than SSDI, but still takes months, and you will have less financial support at the end.

The process of applying is painful, but there are things you can do to help yourself mitigate the emotional harm when you apply.

You deserve to have the best coverage you can get, but the cost of admission to the disability support programs is much higher than most people realize.

link for social welfare guide

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