I would like to begin with a little background. My career focus, when I was able-bodied, was legal/compliance. I spent 15 years in that field, in a variety of capacities. At one-point I provided company surveillance for employee emails. I know what it feels like to look into people’s private lives, to form opinions about them based on what you read. However, I also know that people share what they want you to see, particularly with respect to social media. For an investigator to form an opinion of a person with a chronic illness based on social media, isn’t, in my opinion, entirely ethical, unless there are blatantly obvious discrepancies between what is being reported and what is being presented, or by you lurking or videotaping outside that person’s home. I started this letter the day after your denial letter, indicating I’m not disabled, and would now like to explain to you, Social Security Disability Caseworker/Investigator(s), why surveilling a person with MECFS (myalgic encephalomyelitis / Chronic Fatigue Syndrome) isn’t giving you the whole picture. I’d have welcomed you into my home for as long as you needed so you could see first-hand what my life is like, but instead you made a decision based on…based on what? You had all the proof you needed, and yet, you still chose to deny my ability to feed myself through a system I’ve been paying into since I was 13 years old. With that, I’m going to use the symptoms (listed via cut/paste below) on the Social Security Administration’s website, as I have many more symptoms but want to stay within your guidelines, to explain to you why your decision is clearly not based on facts.
- Orthostatic intolerance (symptoms worsen on maintaining upright posture and improve by lying down);
I was diagnosed with POTS via a tilt table test, which you found in my records. I’ve also seen five cardiologists because the first four didn’t take me seriously, but thankfully with the help of my fitbit readings and home blood pressure cuff, the fifth did. Can I ask you why a person would see five cardiologists? Maybe because that person was truly having a medical problem and was fighting to get it addressed. Can I also ask you why you wouldn’t believe a doctor, also associate professor, who went to Harvard? I spoke with you, you couldn’t even pronounce my name.
- Palpably swollen or tender axillary or cervical lymph nodes;
I have this, you can’t see it, and very few doctors have asked, nor do they provide that type of exam, and to be honest this is such a minute symptom it’s rarely been discussed, but I do have it and it’s in the charts. I can tell you that the two times I tried massage for pain the lymph drain caused me to be very, very ill. But again, not something you’d see, because that’s the least of a person with MECFSs concern.
- Persistent, reproducible muscle tenderness on examinations;
I’ve indicated high levels of pain in every appointment. Some doctor’s write it down, some don’t. I’ve been prescribed heavy duty narcotics for pain. If you’ve read my blog you know how I feel about that and pain management in general. I’ve also been living with pain to some degree since I was a child. I wear pain much better than others. I don’t often discuss it but I’m in pain EVERY SINGLE DAY. The pain caused by MECFS is nothing like I’ve ever experienced. I was diagnosed with fibromyalgia 15 years ago and that pain is nothing compared to this pain. With FM I could work, I could sleep, I could walk long distances. MECFS pain is more like my hair hurts or the seams in my pajamas wake me up because they hurt, it’s every little thing. But it’s every big thing too, it’s every pressure, ever exertion. My cat can’t sit in my lap because it hurts me. This pain is greatly exacerbated by physical and emotional stress. But if you looked at me, you’d never know it, ever. It’s in my charts though, I know you saw it.
- Abnormal immune function, including frequent viral infections with prolonged recovery; and
I have blood test results showing my immune system is completely out of whack and continues to jump all over the place. So really there’s simply no debating this… If you looked through my charts you saw this.
- Non-exudative pharyngitis.
I’ve felt like I had laryngitis since I fell ill nearly five years ago. It was one of my first symptoms. If I sing, raise my voice, get tired, get stressed, my voice first gets froggy and then starts to cut out. I don’t know what causes this but again, it’s one of the least of my worries. It’s painful, but so is the rest of my body. This is also in my charts, but may be written as soft spoken as my energy levels don’t often give me the energy to speak normally.
- Persistent or relapsing fatigue resulting in reduction or impairment in ability to carry out daily or work-related activities
This was what caused me to see doctor after doctor, dating back to August of 2014. Did you notice I’ve seen 29 health care professionals? And still you don’t take me seriously? The last attorney working on my disability case said I have over 800 pages of medical files. Do you think I like going to the doctor? I don’t, I actually hate it. It causes me great stress and zaps what little energy I do have. In fact, the only reason I go at this point is to monitor my blood test results, so I don’t die from several of the issues you’ve likely seen if you did in fact look through my files. Because as you know there is no cure, no FDA treatment. When I’m heading into a flare I feel the sensation of sinking or being pulled down, like my limbs have weights, like my body doesn’t have the energy to hold my tea cup. You can’t imagine how this feels. I wouldn’t wish it on my worst enemy. You’re trapped in your own body without the energy to make it function. And yet, you think I should be working when there are times that I cannot get out of bed? Just so we are clear. I CAN NOT get out of bed, let alone shower, let alone call a cab, let alone work. I think perhaps you need to research this illness a little further as I don’t think you fully grasp the affects it has on someone’s life. I want to believe that that’s the case, and not that you are a person with absolutely no compassion.
- Post-exertional malaise (PEM) (worsening of symptoms after physical, cognitive, or emotional effort)
This is the hallmark MECFS symptom. It’s how you might tell if you have MECFS vs. another illness. MECFS patients worsen with exertion, emotional and physical. And yet you think that I should go from spending my days in bed, because that’s how I’m able to survive, to taking a taxi to work (I am no longer able to drive, one of my previous favorite things to do, my car was sold, and there’s no bus line near me), working, when somedays I can’t get out of bed? So basically, you think I should literally jeopardize my life to work part time? You do realize that MECFS will kill you right? You do realize that people die? That eventually your organs will fail, that the body can only go for so long until it gives out? Just wanting to make sure you’re clear on the facts of this illness. Additionally, just so you’re clear, post-exertional malaise means that while a person with MECFS may be able to something one day they know that within 48 hours they are going to fall very sick. Did you know that what gets us through those moments where you may see us out walking or having a rare outing that our bodies are coursing with adrenaline (similar to if you were in or saw a car accident) and when that adrenaline wears off we are going to be flat in bed? But sometimes we push ourselves because sometimes those moments and the memories you make in them are worth the worsening crash. But what you don’t know is that sometimes those flares never pass. Sometimes, like in my case, I’ve had flares become my new baseline. Over the past five years I’ve gotten worse (symptom wise and blood test wise) and worse due to things I’ve done that I knew better. One was going to the one movie I’ve seen since getting sick, Unrest. My baseline dropped after that and never got back to where it was. So yes, you might see us out, for a quick bit, but then we are straight home, and we will pay, and we might pay for days, weeks, months or we may never fully get back to the baseline of where we were. You need to think about that while you’re working on our cases, and doctors don’t write PEM in charts so you’re just going to have to read between the lines on that one.
- Waking unrefreshed (individual is still fatigued after sleep);
I’ve repeatedly told doctors I wake feeling much worse than when I went to bed. I wake every morning feeling like I’ve got the flu. But again, this symptom pales in comparison so it’s not the first thing doctors write down. I don’t know if it’s in a chart, but I know the next symptom is.
- Disturbed sleep patterns, such as insomnia or prolonged sleeping;
I’ve told doctors repeatedly that I have insomnia, I know insomnia is in my charts, I know you saw that.
- Cognitive impairment(s) such as having difficulty with information processing, short-term memory, reduced concentration and attention;
I’ve seen four Neurologists, as well as underwent several types of testing. Again, if you’ve done thorough surveillance on my social media you know that the cognitive issues I’ve experienced terrify me. You know that I’m scared they won’t stop. I get confused in the car and don’t know where we are or why we’ve stopped at a light, when it’s red, I say left instead of right, I can’t remember asking questions, or if I just did something, the list is endless. I constantly zone out. Not to toot my own horn, but I was previously pretty sharp, now cognitively I’m functioning at a sliver of what I was. I was too weak to undergo the memory testing, similar to the one you sent me to that I had to leave, and actually my last neurologist said that type of testing was actually detrimental as it caused UNDUE STRESS and would definitely result in PEM. Why you would send me for testing that would be harmful for me is completely beyond me. Why would you do that? And when I called you the next day, breathless, with very little voice, and left you a voicemail explaining to you that I’d had to leave and was frustrated that you’d jeopardized my health like that, why did you then weeks later claim I’d never contacted you? Why would you do that? Why is it that it wasn’t until my boyfriend left you a voicemail that you acknowledged my contact? You realize I have the cell phone log, right? This isn’t a game, this my life.
- Persistent muscle pain, tenderness, stiffness, or weakness;
This was already addressed above. I’m constantly, always, every day, from morning through the night, 24 hours a day, every minute of every day, in pain. Is that clear? I’m not even able to sit on my own couch for more than a few hours as it causes me great pain, same for the car. My leg pain wakes me up in the night often. It’s ALL the time, and the more I exert myself the worse I get. So, let’s take a step back, again…you expect me to take a taxi to work, since I can’t drive, and then work, and then the next day when I’m in excruciating pain with fatigue and cognitive issues so bad I can’t get out of bed or even speak correctly…you want me to eventually get fired for not showing up because I’m in flare? I’m just trying to see where your long-term thought process is with this one. I’m trying to understand why you want me to get sicker. Or have you not thought it all the way through? This is a domino effect with this illness, you need to understand that.
- Multi-joint pain without swelling or redness;
Same as above.
- Headaches of a new type, pattern or severity;
I have a headache of varying degrees every day. You saw this in neurologist notes. The thought is that migraine medicine side effects would just exacerbate my symptoms so I’m not currently taking them. But I can assure you my head and neck, they hurt, sometimes to the point of the worst pain I’ve had in my life and I had contractions one minute apart for 14 hours, so I know pain. It’s not just pain though, it’s pressure too. A pressure that causes my eyes to get air behind them that I can press under my eyes and make a popping sound as the pressure releases. This is my reality. My body, as I knew it has been ravaged by this illness, an illness with no cure.
- Sore throat that is frequent or that reoccurs;
- Cardiovascular abnormalities, such as palpitations;
Addressed above but I will add that I see stars when I’m drinking from a water bottle, when I cough, when I raise my arms, I get light headed. There is something very wrong with the oxygen and blood flow systems in my body, they’re very fragile, but you would like me to just push past that? I should just start fainting from exertion again? Oh yes, I’m sure you saw in medical records that I was fainting. You saw that right? Luckily, I better know the signs, have a wheelchair and a cane now so I’m able to get to doctor’s appointments without worrying about when my head will spin, and I’ll drop to the floor.
- Gastrointestinal discomfort (for example, nausea, bloating, or abdominal pain);
I’ve seen two GI doctors and as I’m sure you saw in my charts my stomach hurts most of the time. I’m able to tolerate very few foods. I’ve virtually no appetite. It worsens with PEM, well all my symptoms worsen with PEM, but with this one I feel like I’ve been poisoned and get very sharp stomach pains. Remember the last time you had the stomach flu? I’ve had the symptoms on and off for five years, and they worsen with stress. I’m just curious, when is the last time you went to work with the full onset of the flu?
- Respiratory difficulties, such as labored breathing or sudden breathlessness;
This was another one of my first symptoms, which you should have seen in the cardiologist, as well as my PCP, chart notes. I went from walking around 15 miles a week to not being able to walk 100 feet without breathlessness. This is one of the reasons I went to cardiologist after cardiologist. If you pulled and read my chart notes from the cardiologist, you will see that I was stress tested on a treadmill within months of onset and that I lasted less than a minute. I was unable to continue due to breathlessness and rising heart rate. Did you see that? Does that matter? Just to clarify, I get breathless during flares walking around my house, my body is not getting enough oxygen, but you would like me to push myself into this state constantly? Until what? Until when? I pass out? You do realize that the damage done to the central nervous system with this illness, some of it the body can not repair. So, every over exertion has the potential to cause irreparable harm to our central nervous system. But you knew, that right? I just wanted to make sure you or the overseeing doctors have done the research on the illness your saying I don’t have badly enough to qualify?
- Urinary or bladder problems, such as urinary frequency, nocturia, dysuria, or pain in the bladder region); or
I didn’t see the Urologist listed in the charts you pulled, but had you pulled the ones I’d given you you’d seen I was diagnosed with Interstitial Cystitis. Let me just clear something up for you, if you don’t know what that is, it’s extremely painful. It’s like being in labor. But to me it’s just another pain that I must live with, it’s my life. Do I have to go to the bathroom sometimes every half hour? Yes, I do. That would go over well in a work setting, right? Again, clearly not a concern to you since you didn’t even pull the record, but for me it is a very painful and frustrating bladder condition which came after onset of illness.
- Visual difficulties, such as difficulty with visual focus, impaired depth perception, or severe photosensitivity.
This was another record I don’t believe you pulled. I’ve been seeing a medical ophthalmologist from onset. My eye sight and eye health have also taken a big hit. I would think that would be of concern to you, since your job is to tell me I can work. My eyes are blurry, sensitive to light or flashing lights, and they ooze. The blurriness and sensitivity are worse with fatigue. This isn’t a blurriness glasses can always fix. In a flare or at the end of the day my eyes get tired and they just stop focusing. So, you’re thinking, I should be working, somewhere that doesn’t require me to use my eyes? Just fully trying to grasp where you’re coming from?
Those are symptoms from your website, but I have over 100 more. One hundred plus symptoms that worsen with any exertion. I’m sure you know, after social media surveillance that vertigo is one of my most dreaded. It comes with exertion, stress, smells, and sometimes it just comes with no reason at all. I have a vestibular dysfunction of the central nervous system, but you know that because you pulled those records. You know that and yet you still believe I should be working, exerting myself into a constant state of over 100 symptoms. I’m confused of how that’s ethical, I’m confused of why you think that way? I’m confused with how you read letters from numerous doctors, my friends, my family, as well as capability assessments, all indicating I can’t work but you, you are not a doctor, but you think…what exactly is it that you think? You don’t put that in your denial letter. You just put ‘denied’. You don’t fill me in because if you did then that would help me with my appeal. But no, to you, this is a game. You’re playing a game with someone who is very sick, how does that sit with you?
I’m going to close with what my days look like just in case you think I’m in my house having a dance party every day. I have insomnia and never sleep for more than few hours at a time, so I try to sleep as late as possible otherwise I’d average three to four hours of sleep a night. I cannot simply fall asleep at 9pm, even if I did, I’d be up at midnight. I wake feeling awful, EVERYDAY, I spend my days in bed, I eat breakfast in bed, I eat lunch in bed, I often eat dinner in bed, if I do eat dinner at the table I’m there for a few minutes and then it’s straight back to bed. I’m not lazy, I’m not in bed because I want to be. My career was upholding the law. Do you really think I’d be breaking it!? Do you really think one day I’d say hey I’m going to stop exercising, stop working, sell my car and live in bed? I’m going to go to 29 doctors, tell them all the exact same thing just for fun? I’m a divorced mother. I have no other income, I don’t have a joint account with my boyfriend. His money is not my money. I must ask for any penny that comes my way. Do you really think I enjoy that? Don’t you think after five years I would have gone back to work? I’m trying to understand where you’re coming from and I’m trying to give you the benefit of the doubt because I want to believe that you are undereducated about my illnesses and not that you are trying to worsen my disease so that eventually I’ll end up tube fed, unable to tolerate any light or noise, and eventually die. This illness is progressive (my mother died at 50 from it). You get that right?
Mishka (Meesh-kah, since you seemed to struggle with that one.)
PS – Just in case you need a refresher, since you indicated repeatedly that I’m not disabled.
- (of a person) having a physical or mental condition that limits movements, senses, or activities.“facilities for disabled people”
synonyms: having a disability, wheelchair-using, paralyzed; More
- (of an activity, organization, or facility) specifically designed for or relating to people with a physical or mental disability.