Diagnosis for Disability

ttt

Senior Member
Messages
100
Likes
42
Location
Santa Monica, CA
I have resisted the "disabled" diagnosis for years, because I don't want that on my record, but I'm in a place where I may need to bite the bullet and get that label, because my landlord is harassing me, and I have more legal protection if I'm legally disabled. What diagnosis is used nowadays for ME/CFS, and is it considered an appropriate diagnosis for disability?
 
Messages
5,451
Likes
13,704
Location
Alabama USA
Are you going to try for Social Security Disability in the US?

The mental and psychological transition to 'Disabled' was difficult for me. I am glad I have the benefits and services that I have now.

So sorry you are having a hard time.
 

ttt

Senior Member
Messages
100
Likes
42
Location
Santa Monica, CA
Thanx, @jesse's mom . No, not social security. I just need to have that label of "disabled" so that I've got extra legal protections against my landlord, who is harassing me and trying to get me out of my apartment that I've lived in for 26 years so he can jack up the rent. I'm working my butt off on my recovery, and I'm still working, albeit not full-time like I used to before I got sick. But living each day is like a marathon, and there's no way that, on top of everything I have to do to just maintain the basics, I could pick up and move. Nor could I afford it, as my my healthcare costs are outrageous.
 
Messages
16
Likes
26
Medically, you need to be diagnosed with a condition considered disabling. If you don't want to get SSDI, you could talk to your doctor about getting a disabled parking placard for your car. That's the only other public label for disability I can think of in CA, though I'm no expert. I don't think that will help with your landlord though.
You may want to consult with a disability attorney or attend a legal clinic at some University.
Good luck, Santa Monica sounds like it is becoming another playground for the rich.
 

ttt

Senior Member
Messages
100
Likes
42
Location
Santa Monica, CA
Thanx, @JoeDoaks . I guess what I'm wondering is whether there's a diagnostic code yet for ME/CFS and whether that's considered disabling, or if there are other diagnoses that are being used for situations like this. I already have a disabled parking placard for my car, but that was given to me by my orthopedist, because I kept getting stress fractures on my feet (so he wrote it as "metabolic bone disease," which I don't think is even an official thing).
 
Messages
16
Likes
26
I assume there is a code as it is finally a diagnosed legitimate illness. It is still considered a syndrome though, so you have to have a set of symptoms over a period of time. There is probably a list on this site, but there are actually quite a few symptoms and test results that SSA considers indicative. You just need to google it (diagnostic criteria for CFS). From my experience, the difficulty is not getting the diagnosis, though you may need to print out and bring info to your doctor. You probably want a doctor already familiar with the condition, even if they are not a specialist. That will make it easier, but if you have a good GP, you can give him/her the info and get tests done. There is still a huge range of people diagnosed. Ones like yourself who can still work part time, to others completely bedridden for years. The diagnosis can be a hassle, but nothing like applying for disability from SSA.
 
Messages
16
Likes
26
@ttt One more thing. A big problem with CFS is that the same symptoms are caused by a LOT of different conditions. It sounds like you are getting some sort of treatment, but you do need to do the requisite testing to make sure you don't have some more easily treatable condition.
 

Shoshana

Northern USA
Messages
5,014
Likes
16,243
Location
Northern USA
Hello to @ttt

I don't know the answers to your questions, but just want to say that I hope you do find a solution, that gets the landlord's pressure off of you, while you are already doing the best you can with some work, and your health challenges.
My thought is that even just a letter from any doctor, specifying something to the landlord,
(not a diagnosis or label, but that you need the medical accommodation of specifically what you need... )
might be effective
however, I would probably first want to check with a lawyer, if at all possible, to find out what to reveal and what NOT to, to a landlord. You dont want to give any more info tht you need to, in order to do what you need.

Again, just ideas, I don't know what you should do, in your specific situation, and I don't know whther it is an official dx for S.S. Disability or not, but that is way too difficult a process, unless you need and want it, specifically.
Good wishes to you!
 

ttt

Senior Member
Messages
100
Likes
42
Location
Santa Monica, CA
Is there a diagnostic code for SEID, @Rufous McKinney ? At this point, without an ICD-10 code for this illness, I'm not sure what doctors do for people who have this illness and need to label it for disability.
 

ttt

Senior Member
Messages
100
Likes
42
Location
Santa Monica, CA
@Haso , two reasons:

1) It is very psychologically harmful to me to take on the identity of "disabled." A big part of how I've dealt with this illness is mindset. I refuse the idea of "incurable," and I refuse the idea of "disabled." And going into it with this mindset, I have made great strides toward my recovery.

2) It could (and probably will) be used against me at some point if I have "disabled" on my record. Whether that's denial of insurance or something else, I'd just rather not have that label attached to me.

But given the situation with my landlord, I may need to suck it up and be labeled, because I'm certainly not "abled" enough to be able to move if he continues to harass me and/or tries to evict me.
 
Messages
1,197
Likes
3,164
1) It is very psychologically harmful to me to take on the identity of "disabled." A big part of how I've dealt with this illness is mindset. I refuse the idea of "incurable," and I refuse the idea of "disabled." And going into it with this mindset, I have made great strides toward my recovery.
Its encouraging to know you've made progress in this area and all that is really understandable.
 
Messages
1,197
Likes
3,164
@ttt ..sorry i was still typing.....

I spent about four years, dealing with this in a manner that involved: do not seek the cause of your misfortune. An exercise in personal alchemy.

During that four years, I pushed, hoped I'd survive. I used alot of sick leave for rest breaks, modified work duties, cut back on meetings, but had to keep working.

So: in fact I needed to attend to the cause of my misfortune.

during that time, some headway out there was made: in the name, the diagonoses, managing this, and LDN appeared. So finding LDN was like a gift at the time. I had no idea: something could help like that. And it really did.

So I work on visualiizing my healing, I talk to my red blood cells and set intentions for them, encourage the gut critters to Shape up. Modified some other protocols and they became more effective.

So in my mind, there is a type of balance: wherein we know we have a challenge, and we rise to that challenge and do our best, but also know that we have great personal power to affect: our minds, body and spiritual attitude.
 

gbells

Senior Member
Messages
169
Likes
160
CFS isn't recognized as an automatic qualification on the Social Security list of permanent impairments so you'll either have to quantify your limitations with doctor's notes and a self-reporting diary and/or have a qualifying co-condition like a somatoform disorder. SSA is disingenuous by not stating that 75% of CFS (SEIDs) are too disabled to work.

https://www.cdc.gov/me-cfs/resources/disability.html

SSA is bizarre. On the one hand they demand a bunch of criteria to prove you have CFS but then they require you to do the diary because they don't classify it as an automatic qualifying condition. So basically they are just burdening patients with tests.

https://www.ssa.gov/OP_Home/rulings/di/01/SSR2014-01-di-01.html

Be sure to check out this Nolo page, it has good information on what you need to win.

https://www.nolo.com/legal-encyclopedia/getting-disability-benefits-chronic-fatigue-syndrome.html

How to Develop the Medical Evidence in a CFS Case
Gathering the proper medical evidence is essential to prove a disability claim based on CFS. First, you should submit to Social Security all medical records relevant to your condition, including doctor's clinic notes, the results of x-rays, MRIs, and other testing, and the records from any hospitalizations. If you suffer from other mental or physical conditions in addition to CFS, provide records of those impairments as well.
RELATED ADS

Next, it's critical that you ask your treating primary care physician or specialist for an opinion about your work-related limitations. Your doctor can write a letter or fill out an RFC form that addresses your physical and mental limitations in the following areas:
  • lifting, carrying, pushing, and pulling
  • standing, sitting, and walking
  • maintaining concentration for extended periods
  • maintaining adequate attendance and punctuality, and
  • understanding, remembering, and carrying out simple and complex instructions.
A good supporting opinion from a treating doctor listing deficits in these areas can quickly turn a losing disability case into a winning one.
Some lawyers also recommend that their clients keep a daily log of the nature and severity or their symptoms, and submit a copy to Social Security prior to the hearing. Statements from third parties, including family members, neighbors, or former co-workers, can also prove helpful in documenting the extent of your impairments.
 

rel8ted

Senior Member
Messages
304
Likes
951
Location
VA
Thanx, @JoeDoaks . I guess what I'm wondering is whether there's a diagnostic code yet for ME/CFS and whether that's considered disabling, or if there are other diagnoses that are being used for situations like this. I already have a disabled parking placard for my car, but that was given to me by my orthopedist, because I kept getting stress fractures on my feet (so he wrote it as "metabolic bone disease," which I don't think is even an official thing).
You don't get a disabled placard unless you are disabled. You are over thinking this. Stress fractures impaired your ability to perform activities of daily living and made you disabled.

Figure out what accommodations you are needing and get your doctor to document that you need them.
 
Messages
2,444
Likes
6,852
Location
Second star to the right ...
@ttt
Here's a list of multiple resources, put together for this community by the extremely thoughty and generous @PatJ, who might also have additional input on other avenues for you, or possibly an updated list with more specific info on this particular subject. I've tagged him in.

IOM ME/CFS/SEID diagnosis flowchart

Canadian Consensus Criteria - Comprehensive diagnostic criteria agreed upon by ME/CFS specialists.

International Consensus Criteria - Another document of comprehensive diagnostic criteria agreed upon by ME specialists.

Dr. Katrina Berne's CFS and Fibromyalgia Symptom List - Useful for finding symptoms you didn't realize may be related to ME/CFS.

Testing, treatment, and support
Hip's Roadmap for Testing and Treatment - Hip is a member of Phoenix Rising who has compiled a detailed document that looks at ruling out other conditions, and covers potential treatments.

Erica Verrillo's CFS Treatment Guide 2e - An excellent in-depth guide.

ME/CFS: A Primer for Clinical Practitioners - 2014 Edition