I remember the day I opened the letter from the Social Security Administration, knowing that I very likely would be one of the 80-90% of applicants who is denied benefits on their first attempt. This is the way the system works, to “weed out” the people who put all of the time, effort, money, car rides, appointments, prescriptions, referrals, tests, scans, and so on to “fake” illness- to “get over on the system.” Note that this is a system that we pay into with every paycheck. It is also a system that places the vast majority of people, who do receive benefits, under the poverty line.
I laughed out loud at the line in which they detailed that I was not disabled by Chronic Pain, Costochondritis, Osteoarthritis, Fibromyalgia, Wolff-Parkinson-White Syndrome, Endometriosis, Chronic Migraine, Bipolar Disorder, and PTSD. They also did not obtain records from my rheumatologist who was one of the most important doctors on the list. I assume that this was due to the fact that talking to two different people on the phone as well as mailing in the information was not enough for someone to remember to add it to my file. Add to all of this that I am only 33 years old. People my age aren’t “supposed to” stop working yet.
It was not the Social Security Administration that brought me to tears despite their wait for an appeal hearing being 1-2 years (which I am still waiting for). My Long-Term Disability claim from my last job, through one of the largest and lowest rated insurance companies in the country, was set up for complete failure. Not only did I have to travel to all of my doctors to sign releases to have them send records- which is extremely difficult when you have no income and it hurts to walk, talk, and breathe- I also had to deal with being interrogated like a prisoner of my own struggling mind and body. The hospitals, of course, all charged records fees. Fees for my medical records for appointments paid for by my health insurance I paid almost $140 a month for plus thousands in copays and deductibles- more than my disposable income (At this time, Obamacare forced you to take whatever plan your work offered, even if it was far worse than what you would have received from the marketplace.) Those records never made it to the insurance company in time.
The small amount of records that did were picked apart bit by bit. “It says here you had a full cardiac workup which was normal.” Not only was this bit of information completely false (I have a genetic heart condition) and written by a doctor who didn’t pay attention, it is not relevant to how much pain I’m in and if I am able to work. “It says here that you felt slightly better on the Medrol dose pack.” Leaving out the part where I became worse shortly after the toxic dose of steroids was finished. “Everyone feels better on steroids,” my rheumatologist told me, “but we can’t give them in those high doses because you will get very sick.” So, because all but one set of records never arrived, and the one that did included a mistake that was irrelevant to my claim, and because a toxic dose of drugs that is impossible to prescribe for longer than a week made me feel a little better, I was told to go back to work.
I, of course, could not. And, if I ever would have been able to find recovery during that time in order to return to work, it would not have been possible with the level of stress I was being put through. I did end up winning my Long Term Disability claim with the help of a lawyer whose firm now takes 1/3 of my income every month. But, I can’t complain after surviving on nothing but the kindness of friends and state benefits for over a year during the appeal.
This is what applying for disability is like in a world of diagnoses. We aren’t allowed to focus on what is wrong and how to feel better. We need a single label that fits perfectly. This label must be tested and true and agreed upon by multiple physicians. Then, the fact that the label is disabling must be agreed upon by more physicians and by multiple institutions. Then, those institutions must decide that you deserve benefits for how disabled you are. During this time you cannot have good days, as one good day in a sea of 50 bad ones can still mean you might be able to work. Some doctors believe that applying for disability inhibits recovery in people. I disagree. Being denied disability inhibits recovery in people. When one must spend years proving that their pain is real to a variety of people whose main intention is to prove them wrong, of course people do not get better.
In one way, I completely support and understand the need for diagnoses. Of course we need to be able to put things in categories in order to properly treat and understand them. The problem comes with things we do not yet understand being combined with the belief that we know everything there is to know. Anything that does not fit into our current framework is very often labeled as being “in the patient’s head” or “just stress.” Ironically, stress is connected to 95% of illness, but is usually used as a tool of dismissal of medical concerns rather than a tool of understanding. This is compounded greatly if the patient is female, trans, or of color. Furthermore, the insistence that the only valid diagnoses are those which show up neatly on scans or blood tests also comes from a place of arrogance- assuming we know all there is to know medically- and dismissal of mental health and some physical health struggles.
I was first diagnosed with fibromyalgia when I was 16. As soon as I type that diagnosis, I cringe at my own internalized stigma against it. I ignored this diagnoses because 17 years ago it was even more controversial than it is now. I was told my suffering was not real because people believed the diagnosis was not real. Many still do today. We now know that catching and treating fibromyalgia early is critical to living a good life with it. It was 16 more years- most of those years involving avoiding doctors entirely- before I received the diagnosis again from 3 different medical doctors, along with several other chronic pain conditions. It was the chronic tearing and stabbing chest pain that landed me in the emergency room and started my ascent into regular medical care for anything other than seeking hormones due to being transgender.
This long history of being silenced dates back to childhood where I had mono (as well as endometriosis and other conditions diagnosed later) and my mother was told it was all in my head. This happened several times until my tonsils swelled to the point of being unable to swallow and a severe fever unresponsive to medication led to a spinal tap (which was severely botched by an emergency room doctor.) After I spent several days in the hospital healing from the 16 holes the doctor put in my lower back, draining too much of my necessary cerebrospinal fluid, I tested positive for mono. They never fully figured out the infection that caused the fever, only that it was thankfully not meningitis. My distrust of doctors grew every single year from this point on where I was repeatedly silenced and ignored by most people I saw. Chalk it up to me being female, a goth kid, and having severe mental health struggles. The very ignorant splitting of mental health and physical health into two distinctly separate camps led to (and still leads to) the assumption that people who struggle with mental health cannot be trusted when they become physically ill.
I became my own doctor and pharmacist in my teens. Prescription pain killers eventually led to heroin amongst the other drugs and alcohol I took to self medicate. The only times I interacted with doctors were through hospitals when I overdosed (both intentionally and unintentionally) or when I was detoxing and in rehab. Many of these experiences were terrible and further reinforced the idea that not only were doctors all untrustworthy, but that there must be something very wrong with me if I kept having such terrible experiences. I’ve chosen not to detail these experiences here, but will say that they spanned multiple kinds of misconduct. After about 8 years of this hell, getting clean at 22 meant continuing to be my own doctor, but without the drugs.
In some ways, being my own doctor was a great blessing- I learned to heal in some of the most difficult but often most effective ways. I learned how eating, exercising, sleep hygiene, herbal and otc medications, stress management, self talk, and other things could play large roles in my health. I learned coping skills for mental health struggles that I still use today. But, despite having friends and attending 12 step meetings, I still learned to sit alone with my struggles as much as possible. I was still wearing a mask that said I was fine when nothing could have been further from the truth. As a result, many aspects of my health continued to decline. When one thing got better, other things would get worse. It took abusive relationships, several plans for suicide, accidental but luckily mild otc painkiller overdoses, and a complete decline in my physical health before I was forced to seek out the medical industry again for support. This time I got lucky.
I came to find that while I was making big changes on my own, there were big changes in medicine happening as well. There of course is still massive corruption and authoritarianism in medicine. Conversely, I had the opportunity to be connected with practitioners who got into the field to do good. Almost every doctor I currently have is the type that educates medical facilities about trans issues, writes articles in the paper about being a proud abortion provider, or calls herself a “feminist therapist.” I still run into some terrible human beings here and there and I surely will continue to. In an odd way, getting this sick reconnected me with not being alone. My PCP listens to me every time I have a complaint and assigns a diagnostic label if necessary. But, the diagnosis is not what he bases my treatment on. He bases it on what I need.
Through this process, I also let my close friends in to help. I learned to accept help. I admit, getting diagnoses helped me with that. I was no longer a lazy, weak, individual who just couldn’t get their shit together. There were reasons why I felt the way I did and do. Those reasons have causes. Some of the reasons are not curable. Most of the reasons are treatable. So, here, I contradict myself. In life, two seemingly conflicting things can both be right at the same time. In one way, adherence to diagnostic models, especially of mental health, by medical industries and social security is limiting, reductive, and messy. In another way, diagnoses can give someone a reason for why they are suffering, and may lead to an effective treatment that worked for others suffering for similar reasons. Diagnoses are human-created, meaningless, and sometimes detrimental labels for clusters of symptoms that differ greatly from person to person. Diagnoses also put things into perspective and help guide us toward a path. I can only hope that the type of growth that occurred in the medical industry will continue and will also occur in the disability system.