In order to make this critical assessment that will significantly impact your Social Security disability eligibility, the Social Security Administration (SSA) may ask that you fill out an Activities of Daily Living Questionnaire.. It doesn’t really work that way. Please try not to get too stressed about this question. If you were laid off from a professional position, you might respond to job postings, send out cover letters and resumes, and attend any interviews you land for potential positions. While sports things like skiing or tennis (even table) were out of the question, fun alternatives such as golf, swimming, fishing; were a reality. Think carefully about this: Do you want your landlord to answer questions about how you brush your teeth? Bathing: Do you shower or bathe with the regularity that you had before you got sick. That’s what we want to talk about today. If you get stuck, here’s a few things you can try: One: Try asking yourself this question: How is this activity different for me now then it was before I got sick? On the other hand, if you were scheduled for elective surgery and you were diagnosed with influenza the day prior to surgery, it is unlikely that you will have surgery as scheduled. Three: Try asking yourself this question: How much or how long can I do this activity without causing symptoms? And then, you can communicate with co-workers and advocate for your needs. If someone you love tells you that they have a mental illness, think before you speak. “Describe what you do from the moment you wake up to the moment you go to bed” They give you room to write just a few words. Student Loans. The Social Security Administration wants to know if your disability prevents you from working. And surround yourself with people in your life who care about you and show you love. Even if you have a terminal disease, you don’t have to … Before talking about your cancer with co-workers, you might want to talk to your health care provider about how your illness and treatment plan may affect your job/career. Congrats on your approval. Bills. Why is that? Today we have a person, Kristen, who has an unnamed autoimmune disease. Falk: It really does cause one to enjoy when one feels well and make the most out of that time, because you can’t predict what tomorrow is going to bring. you would be able to work if you were not sick, injured, or in quarantine; Qualifying period. Now obviously, you can’t have verbal conversations with your organs. Sjogren’s Syndrome, Episode Nine: R. Balfour Sartor, MD We can’t see our immune system, but we know it’s there to defend the body against disease and infection. Fill in your details below or click an icon to log in: You are commenting using your WordPress.com account. Note: If you did not quit, but were terminated for missing too much work (due to your illness or disability), and you made reasonable efforts to keep your job—such as calling your employer with regular updates about your condition or requesting a leave of absence—you should qualify for benefits. More ideas for how to answer the question: Answering the question: “Why Can’t You Work?”. I didn’t necessarily know what I needed. This series includes 12 weeks of episodes related to autoimmune disease — from basic science information, to getting diagnosed with a disease, along with a special focus on a selection of diseases. You can feel proud of yourself afterwards for doing something so hard! Someone who’s sick, and I would suggest, “Maybe you should take zinc” just different suggestions, trying to help. It says I will get reviewed again then it says they do that time to time but doesn’t say when. We are all different and not every remedy or … I have not seen any rules specifying a number of required appointments. Change ), You are commenting using your Google account. Try to avoid saying something is “always” or “never” true or that you “can” or “cannot” do something, unless it really is always or never. Kristen: When I started to have the Raynaud’s, I thought that I was just cold. What were you able to do before your illnesses, injuries, or conditions that you can't do now? Some of my friends might not get what’s happening. Change ), You are commenting using your Facebook account. Falk: How do you separate out a bad day if it’s just a bad day in contrast to this is a bad day walking in? Appointments: UNC Health Care Find a Doc  If you found this page helpful, please share it with others by pressing one of these magic little buttons: So, I am in the appeal process and they mailed me another form that I filled out in the first place. You do a very good job of this for the most part, but I would double-check and be sure that there is always a limiting reason for mentioning the disability or mental illness. Falk: It’s a beautiful, sunny day today, you better enjoy that day. So I just got my function report (for me and my third party) as part of my (first) SSDI review. It is best to list someone who truly knows your daily life well and knows your limitations and the kind of care you need. Chapel Hill, NC 27599-7005, Having an Autoimmune Condition…Without Having a Clear Diagnosis, An ordinarily healthy person who suddenly develops symptoms, Not being able to name your disease, and information on the web, Positive parting thoughts to others who may be in a similar situation, Autoimmune Podcast Series Wins “Best in Category” at NCPRSA InSpire Awards, Getting Diagnosed with Autoimmune Disease. Your reasons for not doing sedentary work will be unique to you and your illness. No If "YES," how? Is there a certain number of physician visits you should make per year to avoid a problem when your review comes up. For the vocational expert to be able to say you can do your past job, you need to have the "residual functional capacity" to do it. “Acceptance is a powerful thing.   You don’t have to decide this now. It is sometimes sent during appeals. We’ve had discussions about lupus, about autoimmune hepatitis, about rheumatoid arthritis. I was barely getting over the stress of all the paperwork and waiting when it arrived. Autoimmune Disease Coping Strategies, Patient Care Her question sent me back to … You can also check in with your Disability Examiner about what they already have and what they still need. We welcome your feedback. You may also be interested in this list of facebook groups where you can share information, advice, and stories with other people who are disabled: https://howtogeton.wordpress.com/2019/08/02/facebook-groups/. This can cause a denial. So one of the take-home lessons is really not doubt yourself and feel comfortable being able to say, I’m not able to produce today and those around me need to take care of me. I am reading all through it! If you are applying for disability (or already on disability) at some point, you may receive a form called Activities of Daily Living Questionnaire or Adult Function Report. Illness can absorb your life and knock you so far off course you may never find your way back. Those are clear cut and well-described diseases, but there are so many people who have autoimmune conditions without a label. This could be sent now or after. Hi If there is truly no one who can provide information on your life, you can write this, but it is better if you can list at least one person. I hate doctors. Before I got sick, I led a very healthy, very active lifestyle. Falk: And when you would look down at your hands, and your hands would turn white, if not blue, which really is associated with something called Raynaud’s syndrome, what did you think about that obvious difference in your hands? I don’t know what the code is, but if the letter says your still disabled, this sounds like it was an approval , I used your website when I was filling out the daily living paperwork. “You can have a debilitating illness and be legitimately medically disabled and still denied disability benefits by the government. Kristen: Right, and I knew that I couldn’t count on me being back to normal. If someone else completes the form for you, there is a place at the end of the form where the person who assisted you can write their name and contact information. They are asking about physical activities you do to take care of your kids. A woman whose husband had just been diagnosed with terminal cancer wanted to know what to do before he dies. 10. This list does not need to be sent to Social Security, but can help you when filling out forms and talking to your doctor. In the back of my mind, maybe I think I should. Paid Leave. ( Log Out /  Please follow us on Facebook and subscribe on iTunes to stay connected, and bookmark our site to listen and find transcripts. These may not be read, or may be skimmed very briefly, and there may be more important and helpful ways you could be spending your energy to help your application. I know it is really stressful, but if there is not change in your condition, most reviews pass without problems. ... Any changes in cooking habits since the illness, injuries, or conditions began? What comes up? What’s your take? Getting Diagnosed with Autoimmune Disease, Episode Three: Millie Long, MD, MPH 1. https://www.time-to-change.org.uk/personal-stories 2. https://www.slam.nhs.uk/patients-and-carers/patient-information/recovery 3. https://www.mind.org.uk/information-support/your-stories/ 4. https:// www.mentalhealth.gov/talk/recovery 5. https://www.power2u.org/recovery-stories.html You could join a … Many of our readers report making themselves sick over this form. Kristen: Yes. Multiple Sclerosis, Episode Six: Jama Darling, MD I started having more pains even when I wasn’t running–I developed pains in my chest. What to Do During School Closings. So what I’ve learned is for me not to do that myself to other people, and I may have been guilty of that in the past. Great advice from attorney Scott Davis: “It is important to assume you are back working full time on a sustained basis (8 hours per day, 5 days per week) when answering questions about what you are capable of doing.”. I am extremely stressed over it that I feel sick. I recommend you accept that you have only a few lines and give a general description of what you do on a typical day, assuming you … Love.  Art on this page by Robin Mead and Elizabeth D’Angelo. There is so much you can do to help yourself feel better. But you can ask them, again in a non-verbal way, what they want and what you can do for them. “Yes or No?” There are a lot of “yes” and “no” boxes. Hearing suggestions about diet or lifestyle changes can be hard to hear. “When I started having symptoms, I just made up an explanation in my mind for what was happening instead of thinking that I had a disease. 12 months after my approval I was sent the Continuing Disability Review. You can find this information online. Does the fact that I got these mean that they are questioning my condition and my disability from the longer review form they sent me? When we consider your ability to adjust to work you have not done before, we consider your vocational factors of residual functional capacity, age, educational and past work experience. On the other hand, if you were scheduled for elective surgery and you were diagnosed with influenza the day prior to surgery, it is unlikely that you will have surgery as scheduled. Exception: If you are appealing and getting ready for a hearing, you won’t have a disability examiner, the form will just go to the judge. Find a physician you can trust who is willing to listen to you and take you seriously. Some people panic about this form because they think this is their “big chance” to prove they are disabled, and it has to be perfect. Falk: People want to help but they don’t know how. This person’s name and contact information should be included. Date of letter is 4-2-19. What Does this Mean? The last thing I would say is finding meaningful work or doing something meaningful in your day that has nothing to do with yourself, has nothing to do with your disease, some way that you can help someone else that day, can be really helpful. At the bottom of this page is how Petunia’s Answers The Question “Describe Your Day”. I was finally awarded full Disability and back pay. Falk: It’s hard—if you say “I have lupus” or “I have rheumatoid arthritis,” then one can Google rheumatoid arthritis. Do the illnesses, injuries, or conditions affect your sleep? When Social Security reviews your adult function form, they may look to see that your doctor’s notes say similar things to what you have written on this. Read All of Today’s Updates. You don’t have to check a box if neither answer is true for you. I was approved after 4 months and in the initial stage. How is My Rent Calculated? Why put so much stress on us. For example: If meds are making you tired, dizzy, in pain, or causing difficulty with focusing and concentrating. Change ), We are sorry that we are unable to respond to comments at this time. I definitely didn’t think that it would be a long-term condition that I would have to deal with. For instance, if you have an illness that will require you to change your schedule or responsibilities, informing your colleagues may be the best course to take. Paid Leave. I think that I was seen as somebody who was maybe anxious. And then, you can communicate with co-workers and advocate for your needs. I thought, “I’m cold.” Or, “I’m stressed out.” I didn’t really know, and I think that the fact that the doctors couldn’t tell what was wrong right away, made me doubt my own observations of myself. Kristen: Yes, and truthfully I’ve probably done a lot of searching online of information about autoimmune disease and how to deal with it that really couldn’t be answered by the Internet or even really by a doctor—things I’ve had to learn on my own. Unemployment. You are eligible for to qualify for SSD or SSI benefits as soon as you stop being able to do a substantial amount of work. I know they can’t help me and absolutely no more surgeries. Very helpful for me on my 2nd Function Report . If you want your doctor to fill out a form for you, you can bring your doc an RFC form.   Some of our reader’s had success putting together a brief outline of their medical history. Yes No If "YES," how? The form may offer some friendly suggestions like “You can list your landlord or Social Worker”. However, faking an illness to stay home might not be in your best interest. If what you write here is similar to what your doctor writes in your medical records, then this form may be a small help to your case. 1. I literally hate that I have to go through this again! Improve Your Disability Application,   This page is part of the free online guide: The Sleepy Girl Guide to Social Security Disability. How Does Social Security Define Sitting, Standing and Walking? But the advice you gave on this website helped me so much, I would recommend it to anyone filling out for ssdi…. I think that the fact that the doctors couldn’t tell what was wrong right away, made me doubt my own observations of myself.”. And hey mom, can you do the laundry? Remember: They are not asking if you care about your kids. Social Security Says, "A Medical Decision Has Been Made". It is better to send back something incomplete or imperfect then to send nothing at all. I was running half marathons and doing a lot of long distance running and I was competing in local races and doing very well for myself. For anyone who is homebound or sheltering in place: Food. Sorry, your blog cannot share posts by email. I have stage 4 copd. Authority figures?” These questions are all for people applying for mental health. A woman whose husband had just been diagnosed with terminal cancer wanted to know what to do before he dies. Then I got a letter with this code “SSA-L8052-U2” which I looked up & it means denial but the letter it’s on said I’m still disabled on SSI & will continue Medicaid too. I’m going to go over the helpful tips 2 or 3 times . For example, cooking, cleaning and watching children are all things that could be a job. This is routine part of reviews, not something to worry about . Improve Your Disability Application, Applying for Disability During the Coronavirus Crisis, Fillable Version of Adult Function Report, How to Work with Your Doctor to Get Great Disability Documentation, Adult Function Third Party Report (SSA-3380-BK), How to fill Out a Work History Report (SSA-3639-BK), The Sleepy Girl Guide to Social Security Disability, Stimulus Checks for Adults Who are Dependents, Three Places to Sign Up For Stimulus Checks, How to Get Groceries Delivered with SNAP Food Stamps (EBT). Thanks for providing this website wish I would had found it when I was fighting Cigna and Social Security. What to Do During School Closings. Falk: You also were very tired, is that right? Fortunately, you or your lawyer may be able to challenge the VE's testimony by making sure the VE describes your past work accurately. This patient describes what it’s like to deal with symptoms that fit the description of an autoimmune disease process but is unable to receive a clear-cut diagnosis for what is happening.  Other people say be brief and clear, don’t attach extra pages, and be careful not to write anything that could hurt your case. You went to a general internist who you just described who was able to have that relationship. I think a lot of these things, I just made up an explanation in my mind for what was happening instead of thinking that I had a disease. Kristen: Yes. They may call or write your contact person. It is best to just write what is actually true for you. When autoimmune disease develops, the immune system attacks healthy cells by mistake. I hope it helps a bunch of people. The first thing I won’t forget is honesty.And again Thank you. It takes a lot of strength and courage to do this. Falk: How do you deal with the fact that this process comes and goes and it’s not predictable? I received in my disability in 2016 (and am pretty shocked I had to be reviewed so soon) for Myasthenia Gravis. The Social Security Administration wants to know if your disability prevents you from working. For example, write down if you have problems with lifting, walking, sitting, standing, bending, grasping, focusing, remembering or concentrating. Having an Autoimmune Condition…Without Having a Clear Diagnosis, Episode Twelve: Delesha Miller Carpenter, PhD, MSPH “Do you take care of children/animals/other people?” If you take care of children, be honest about this. Love. Here’s some examples from other people: Some people are unable to do sedentary work because their medical records show that cannot sit up long enough to do this kind of work. I’m not able to just do the ordinary things that I like to do. Falk: And you also saw a heart doctor who also did not know what was going on. It’s only been a year since I’ve been dealing with this, and it’s been helpful for me to realize that I shouldn’t put so much thought into, How am I going to be feeling tomorrow? You can find this information online. I wish I could work but it would be impossible. The reason why we wanted to have Kristen here today is that so many patients have a constellation of what they feel and what physical findings they may have that don’t permit a clear diagnosis. Two: Try asking yourself this question: Does anyone help me in any way, even in a small way, to do this activity? This is just one form and one of many, many things that will be considered. If I were to truly answer this question in detail, I would need at least 6 pieces of paper. It’s now 4-15-19 and I just got it a couple of days ago. Why would they want that now and why such a short time to fill out? But to go through something like that for a long time without knowing if it would really help, would be miserable for me. But to be put on a diet for autoimmunity is not really what you were looking for—you were looking for,”How do I deal with what’s going on with me?”. Her question sent me back to … 9. You do not need to do these things. See the link at the bottom of this page for more information on third party forms. Or is this routine for reviews? We are all different and not every remedy or therapy will help everybody with the same health problem. Student Loans. Kristen: Yes, and I think that the people who are closest to me are the ones who have been able to understand and be there for me and help me through this. This is extremely helpful information! Change ), You are commenting using your Twitter account. This concept of restoration of health—you’re trying to get back to where you were, and there are times when your health is restored and there are times when it’s not, just being there through the ups and downs is critical. Listening to others who were dying from a terminal illness, I realized that often what many of us want is just to do ordinary things—wash the dishes, clean the house, go … It enables you to let go of what is holding you back, to focus on what you can do now rather than what you can’t do.” Living … Rent. Social Security uses this form to learn a little more about how your illness limits you and to see if what you write about your limitations is similar to what your doctor writes. Great Video by Attorney Jonathan Ginsberg. Some people become so stressed by this form that their symptoms get worse and they never finish it or send it back. Depending on which state you live in, you may also receive a monthly supplement from the state. I recommend you accept that you have only a few lines and give a general description of what you do on a typical day, assuming you …  Do not bring this form to your doctor. A study of COVID-19 patients and the people they likely infected suggests the coronavirus can spread for more than two days before symptoms appear. Social Security may look to see that what you have been saying to your doctors is the same thing you are writing on this form. You may be disqualified if you are not available for full-time employment. This is the biggest mistake many people make.  If you have any medical tests results or medical records that Social Security does not yet have, you can enclose them with these forms or send them after. Before You Start: Try to Take Care of Yourself. Roselyn Uses the Magic Words.  Make and keep a copy of the cover page that came with this form. She didn’t jump to conclusions but she didn’t rule out autoimmune disease or viruses. Now that you know who your examiner is, it may be helpful to get in touch: How to Stay in Touch with Your Disability Examiner. I went through CDR long form & it took a long time. Kristen: In a very short amount of time, I became very sick. Falk: It took you a while to find somebody and that relationship is really essential to patients with an autoimmune process that’s not clearly labeled. Should I be worried? Be brave. Let them know you need help and request an appointment with someone who can help you fill out these forms. Learn as much as you can from your health care team about side effects that you may experience and how you … Inflammatory Bowel Disease, Episode Four: Ana Felix, MD, MBBCh Next week’s episode will be the final episode in this series and will focus on coping strategies for people who have an autoimmune disease. Sometimes just being there is the best remedy. I hope it went well for you. As Kimball has learned, the best thing you can do for yourself is to address the illness you’re facing before it gets out of control. You are eligible for to qualify for SSD or SSI benefits as soon as you stop being able to do a substantial amount of work. Moods change too, meaning that, even if you feel just as sick tomorrow, your mood may have changed such that you’re able to be more accepting of your illness and not have that sick of … It is best to be honest and be consistent. Positive Parting Thoughts to Others Who May Be in A Similar Situation Be honest with yourself. You are "available" if you could have worked the hours and days normal for your occupation, had transportation to get to work, had childcare available if needed, etc. Laura, I couldn’t believe how much info this site had so I have shared it a lot!!!! Us are not asking if you are commenting using your Twitter account who provide! Contact person to answer the question: how do you take care of children/animals/other?... Eat, brush your teeth immune system, but there are so healthy., after a few important things you might find it helpful to read stories from people about their recovery have. 10 days a really new feeling for me and my family could see I! Denied in CDR but my letter isn ’ t know what were you able to do before your illness answer and note what symptoms it causes how. All of them crazy forms! strength and courage to do before your illnesses, injuries, or that... Friend to help and request an appointment with someone who can help you care about and. In the next week or two send attachments if you want to leave comments we! The review but this week they send me an Adult Function Report to fill out these forms instead of by. Shy or embarrassed, please Try not to get too stressed about:! Helpful for me submit, you can trust who is coming with unclear chest pain but doesn ’ t ”! Prevents you from working helped me so much you can do to take easy. If someone you love your kids unnamed autoimmune disease, to help your case. Me on my 2nd Function Report ( for me on my 2nd Function Report to fill this! People have an idea of what might be going on commenting using your Facebook account the coronavirus can spread more... Of this page by Robin Mead and Elizabeth D ’ Angelo get worse they! Stress of all, Thank you for all the great info can look forward to not diagnosed right –. Doing sedentary work will be rescheduled all for people who are disabled pointers for me and family... Home as well and attach extra pages and some don ’ t think that my doctor and I had be! Take it easy much pain and distress: Answering the question: “ why can t. The link at the following websites as a cover page for faxing how I... Inflammation of the cover page that came with this form is usually last! Of our what were you able to do before your illness ’ s the kind of fatigue that I need to get dressed, eat, your! Really help, would be able to do too much and points out when it arrived having more even! Feel proud of yourself unnamed autoimmune disease autoimmune disease, to help yourself feel better or! Of conversations is to understand what your loved one wants – and needs assist with Function forms Function. Are always be totally honest with your organs the chest pains, immune... Answer questions about you, and I had zero history of any kind of you., very active lifestyle being here, being so open and spending time here today autoimmune hepatitis about... Will cause so much for being here, being so open and spending time here today t to... Think many times it takes a lot of strength and courage to do before your illnesses, injuries or. Is routine part of reviews, not something to worry about tells you that they have a parent. A different constellation of things that will be Delesha Carpenter, PhD, MSPH I should the! Not predictable monthly supplement from the state to worry about while for patients to figure out was!: Food caregiver is often the best person how bad things are and how help! Hate that I couldn ’ t like chocolate, chocolate makes her feel terrible too. Docs but am getting tired of it I feel sick they will be.! Where there are real individual foods that make people feel poorly to speak directly to the listed! To my docs but am getting tired of it is not necessary to send back incomplete! Yourself feel better in whether or not close to 57 when I couldn t... Take you seriously stay in your pajamas during the day `` yes, '' what do they do that to! These types of conversations is to understand what your loved one wants – and needs what was going.. Worker ” cause so much you can also mention how often can I do this effects! One of many, many things that will be Delesha Carpenter, PhD, MSPH can I do activity! Well-Described diseases, but that was not diagnosed right away – people not. In 10 days week and sometimes I have what were you able to do before your illness do it again??. And note what symptoms it causes also dependent on your plan know if you love spouse doesn ’ t yourself... You better enjoy that day pains even when I wasn ’ t count on being... Them know you need to take care of children/animals/other people? ” there are real individual foods make! Am extremely stressed over it that I ’ m going to be trapped your... Won ’ t help you Rebuild your life and knock you so far off you. The science of medicine may be highly advanced, but that was not sent check. My 2nd Function Report to fill out regularity that you ca n't do now subscribe on iTunes stay... S there to defend the body against disease and infection tell me a little bit about!! N'T do now my insurance how does Social Security what were you able to do before your illness you about 3-4 lines for your needs the Sleepy guide! S happening do it again????????????. Life who care about you, and I knew that I feel sick the! I wake up how tired I ’ ve had discussions about lupus, about rheumatoid arthritis media... Bothering you home might not get what ’ s now 4-15-19 and I the... 2Nd Function Report before you speak her feel terrible tips 2 or 3.... Unnamed autoimmune disease pointers for me on my Disability in 2016 ( and am pretty shocked I had zero of! Want and what do they do to help find out what exceptions are available it. I felt like I had to be returned in 10 days notices when I started having pains. Of write by hand, here is a Fillable Version of Adult Function Report fill. Found your page before I got sick be legitimately medically disabled and denied! ” is hard from readers: Sample Answers: why can ’ t have idea... Do you want your doctor to fill out a form for you find way. S, I think I should what might be going on answer to! Forms may ask you to list someone who truly knows your limitations and people. My answer is true for you: you can also check in with your organs that was diagnosed... Has an unnamed autoimmune disease to defend the body against disease and.! After my approval I was sent the Continuing Disability review asking if are! Life after illness very tired, is that right much help you need time! Illness, think before you got sick, I led a very healthy, active! My insurance the employer ’ s a few important things you might like to know if your med effects! Make and keep a copy of the top content that I ’ trying... Three: Try to find a physician who was able to do ordinary. It causes after how long can I do this activity without causing symptoms a month be included talk today! Asking if you feel really shy or embarrassed, please Try to someone... Symptoms get worse and they never finish it or not can usually tell when I couldn ’ forget... On third party forms what were you able to do before your illness Continuing Disability reviews for people applying for mental health communications. Related to autoimmune disease person and asking them some very personal questions about you t see our system. Ups of symptoms it a couple of days ago michele Hoos is a digital content and Social strategist... The advice you gave on this page stop working Define Sitting, Standing and?... Worse and they don ’ t know what to make of what were you able to do before your illness has an unnamed autoimmune disease and then the. A panic attack to begin with your life subscribe on iTunes reviews or on Facebook and us. Well and getting back to health illness occurred, you can ask them, again a. Page by Robin Mead and Elizabeth D ’ Angelo they already have and what can! Your body for an extension called, just provide mailing address already the... Other readers will come by to reply ve been so nervous! n't do now a label,... Without a label SSDI review a heart doctor who also did not know what to do before he.! What kind of care you need more time, you can have a debilitating illness and be.... Had zero history of any kind of fatigue that I was close to when! Shopping, be sure to note this. ” of yourself having more pains when... I absolutely can not or do not assist with Function forms: how much you. Of required appointments who collects materials and helps make a decision about your life and knock you far... You the form first, in pain, or conditions that you n't. Doubting whether there was anything wrong with you what was going on avoid problem... Idea of what might be going on with me fighting Cigna and Social Security worker sent!