What Ehlers-Danlos Syndrome means for your SSDI payment amount

Your SSDI payment in New Jersey depends on your own work history and earnings record, not on your diagnosis. Ehlers-Danlos Syndrome (EDS) does not change the formula Social Security uses to calculate your benefit. What matters is how much you earned before you stopped working—the higher your lifetime earnings, the higher your payment will be.

That said, EDS can affect your payment indirectly. If the condition forced you to leave work early, you may have fewer years of earnings on record, which lowers the amount. If you worked through pain and fatigue and built a solid earnings history before you had to stop, your payment will reflect that. Social Security looks at your 35 highest-earning years; if you worked fewer than 35 years, they count zeros for the missing years, which also reduces your payment.

New Jersey does not add a state supplement to federal SSDI payments, so there is no extra amount based on where you live. Your payment is the same whether you receive it in Newark or Cape May.

Key Takeaways

  • Your SSDI payment is based on your own earnings history, not your diagnosis, so EDS itself does not change the amount you receive.
  • If EDS forced you to stop working before age 60, you may have fewer than 35 years of earnings on record, which reduces your payment.
  • New Jersey does not provide a state supplement to SSDI, so your federal payment is your only benefit from Social Security.
  • You can request a detailed earnings record from Social Security to see exactly which years count toward your payment and spot any missing income.

How your work history before EDS diagnosis affects the payment

Social Security calculates your SSDI payment by averaging your highest 35 years of earnings, adjusted for inflation. The longer you worked before EDS made work impossible, the more years of income count in that average. If you worked steadily from age 22 to age 50 and then had to stop because of EDS complications, Social Security counts 28 years of actual earnings and 7 years of zeros, which pulls your average down.

The timing of your diagnosis matters less than the timing of when you stopped earning. Some people with EDS work for years after diagnosis by adjusting their job or taking medical leave. Others become unable to work when ready. Social Security only counts the years you actually had reportable earnings—W-2 wages or self-employment income that you reported to the IRS.

If you worked part-time or had gaps in employment (for school, caregiving, or other reasons), those years also count as zeros in the 35-year average. You cannot remove them or replace them with higher-earning years. This is why people who worked fewer years or earned less overall receive lower SSDI payments than those with longer, higher-earning work histories.

Checking your earnings record for accuracy

Before you assume your payment is final, request your official earnings record from Social Security. Mistakes happen—an employer may have reported your wages under the wrong name or Social Security number, or income may have been recorded in the wrong year. These errors directly reduce your payment, and they are more common than most people realize.

You can view your earnings record online through your my Social Security account at ssa.gov, or you can call Social Security at 1-800-772-1213 and ask them to mail you a detailed statement. The record shows every year you worked and how much you earned each year. Review it carefully, especially years when you changed jobs or had a name change.

If you find an error, report it to Social Security right away. You have three years, three months, and 15 days from the end of the year in which the wages were earned to correct them. After that window closes, the earnings are locked in and cannot be changed, even if your employer has proof of the correct amount.

Whether EDS-related medical costs reduce your SSDI payment

Medical expenses do not reduce your SSDI payment. Social Security does not ask about or account for what you spend on doctor visits, medications, physical therapy, or any other health care related to EDS. Your payment is based solely on your past earnings, not on your current costs.

This is different from Supplemental Security Income (SSI), which is a needs-based program where medical expenses can affect what you receive. SSDI is an earned benefit tied to your work record, so your health care spending is irrelevant to the calculation.

How to understand your payment notice from Social Security

When Social Security approves your SSDI claim, they send you a notice that shows your monthly payment amount. This notice includes a breakdown showing your primary insurance amount (PIA)—the base payment calculated from your earnings record. The notice may also show a reduction if you are under full retirement age, though SSDI does not have the same age-based reductions that retirement benefits do.

The notice will state the effective date your payments begin. For SSDI, this is typically the first day of the month after your waiting period ends (SSDI has a five-month waiting period from the date your disability began). If you were working when you applied and Social Security determines your disability began months earlier, your first payment may be a lump sum covering back pay.

Keep this notice in a safe place. You will need it to prove your benefit amount if you explore for other programs, such as Medicaid or housing information, or if you need to update your information with Social Security later.

What happens to your payment if you return to work

If you try working again and earn money, your SSDI payment does not automatically stop. Social Security has a trial work period that lets you test your ability to work without losing benefits. During this nine-month period, you can earn any amount and keep your full SSDI payment. After the trial work period ends, if your earnings are above a certain level (called substantial gainful activity, or SGA), your benefits will stop.

The SGA threshold changes each year. In 2024, it is $1,550 per month for non-blind individuals, but this amount increases annually. If you earn less than that, your SSDI continues. If you earn more, your payment stops, but you enter an extended may be able to access period where you can work for nine more months without benefits, then have your benefits reinstated if you drop below SGA again within 60 months.

Because EDS symptoms can be unpredictable, many people with the condition worry about whether they can sustain work. Social Security's work incentives are designed for exactly this situation. Before you return to work, contact your local Social Security office or call 1-800-772-1213 to ask about work incentives and how they explore to your specific situation.

Cost of living and your SSDI payment in New Jersey

New Jersey has a higher cost of living than many states, but SSDI payments do not adjust for regional differences. Your payment is the same in Jersey City as it would be in Mississippi. Social Security applies a national cost-of-living adjustment (COLA) each year to all SSDI payments, but this is the same percentage increase for everyone, regardless of where they live.

If your SSDI payment feels insufficient for New Jersey's housing, food, and medical costs, you may be able to combine it with other programs. Medicaid covers health care and is available to most SSDI recipients. Some people also receive Supplemental Security Income (SSI) if their SSDI payment is very low, though SSI has strict resource limits. Your local New Jersey Department of Human Services office can tell you which programs you may be able to combine with your SSDI.

Frequently Asked Questions

Can I get a higher SSDI payment if I have severe EDS?

No. The severity of your EDS does not affect your payment amount. SSDI only looks at your past earnings. A person with mild EDS who worked for 30 years will receive a higher payment than someone with severe EDS who worked for 10 years, because the first person earned more over their lifetime.

What if I was self-employed when EDS made me stop working?

Self-employment income counts the same way as W-2 wages. Social Security uses your Schedule C (self-employment tax form) to verify your earnings. If you did not report self-employment income to the IRS, Social Security has no record of it and cannot count it toward your payment, even if you can prove you earned it.

Does my SSDI payment change if I move to a different state?

No. Your SSDI payment is federal and does not change based on where you live. Some states offer additional programs or supplements, but New Jersey does not. If you move out of New Jersey, your SSDI amount stays the same.

Can I see how Social Security calculated my specific payment amount?

Yes. Your approval notice shows your primary insurance amount. You can also contact Social Security at 1-800-772-1213 and ask them to explain the calculation. They can tell you which 35 years were used, what your average monthly earnings were, and how that translated to your payment.

What if I took time off work for EDS treatment before I applied for SSDI?

Those years count as zeros in your 35-year average, which lowers your payment. Social Security does not exclude years for medical reasons. If you took unpaid leave or worked part-time during treatment, only the income you actually earned in those years counts.