The Enigma of Hidden Illness
Love, like and learn
The hardest thing I face and have faced for 10 years now, is validation from others that I am sick. To me, very sick. The newest thing I face physiologically is fatigue. I now realize that I've never been fatigued before, ever. Fatigue is so crippling because it robs you of your energy, motivation and will. Even to write this can only be done when I'm not in fatigue.
It started like gangbusters back in October of 2009. It turns out it was probably the first sign of diabetes or the accumulation of high glucose counts that had been building for a few years. It scared me. I thought I was having a stroke. I fought the idea of calling it an emergency but after being symptomatic four hours after the first sign that day, I thought I should make sure it wasn't something serious. And typically, very, very typically, the EMT's and ER techs, nurses and doctors, who have neither the time, experience or education to look further, treat me like a panic sufferer going through an anxiety attack. This is why I avoid emergency rooms at all costs. I only go so I can be assured that there's nothing seriously wrong or the need to find out why my vitals are so out of whack. But the humility of being put through tests unnecessarily, of being left alone in an emergency room, loosely draped partition, hooked up to needles and pads and beeping machines when all I cared about was the assurance I wasn't having a stroke or a heart attack, or something. They know I've been diagnosed with Paget's and Spondylitis. They know I've had tons of MRI's, CT scans, X-rays, blood tests, etc., but they still make me go through it all. They say "your vitals are all OK, do you have a lot of stress in your life?" Yeah I got stress. I got severe pain all the time and no one seems to believe me. I thought this stupidity and indignity would end with the diagnosis...six years ago! So, three months later, I find out I'm diabetic, something the emergency room never caught. They can get so caught up in their own agenda that it causes them to miss the obvious. Again, the problem is - Validation.
By now, I believe it is a psychological problem. When I mention a symptom, usually a new symptom, ( I don't bring up the old ones too much ), people become armchair doctors with things like,"you should exercise more, or eat right, or try a hot or cold pack", as though these diseases are on the same plane as muscle strains. Especially those who watch medical shows on TV, like soap operas, or professionals who must be hoping it's "in my mind" or anxiety borne. But when I think of the studies I've done in the last 10 years, the boring monotonous liturgy of papers I've read looking for an answer, any bit of knowledge to add to the soup, I realize no one will validate these new brain cells either. Who is there to talk to? Who can I share this knowledge with? Or run ideas by?
Doctors don't allow patients to have this knowledge. They believe that if a patient does their own research they will get it wrong or try to self diagnose. Nurses or other professionals like easy answers so they can keep the line moving. Friends are probably sick of hearing about it. They just want you to be better so you can go do things with them, like it used to be. And family, well they're just stuck in the past, seeing us the sickly child who had such a vivid imagination. So who is there to talk to? Being sick with a hidden illness is such a lonely island. A quiet, lonely island. It's funny how different it would all be if I wasn't sick. Even though medical students have to study a myriad of illnesses, symptoms, and the meaning of vital signs and blood counts over an eight year period, and I've studied one disease, one set of symptoms and signs for over 10 years, they're still the experts. I am still a sickly child. As one very astute nurse put it, everyone just wants you to be well, that's all, just be well, because it upsets their sense of security. If someone they love is sick, it scares them. Wow!
Yes, it's much more complex than that, but basically, wow! It is the answer to "friends and family validation" problems. Don't bring it up. Don't talk about it. Don't act sick. Don't be sick. When family or friends are around, put your illness away for now. Talk about other things. Try to be the old you. It won't help you, but it will mellow out the fear you are causing those who love you. And that might be worth it, as hard as it is.
Also, it seems, when dealing with professionals, ask some questions but offer no answers. None. Get copies of all your reports, ask about things you don't know, go along with the professionals whims, as much as possible, then take the information and research it yourself. Another problem with hidden illness, especially if you're the kind of person who doesn't "put on a show" or embellish your illness. In physical therapy we are taught exercises and stretches to help us heal or keep us as limber as possible.
We are also taught ways to adapt to our illness in order to accomplish everyday tasks and proper body mechanics to avoid damaging things further. These exercises are very helpful and really do work, but the other side of the coin is the same validation issue. As my disease progressed and having no known diagnosis, I stretched and exercised to a misdirected lower back injury regimen. The doctors, who prescribed the therapies, were convinced this was just another minor injury to a vertebra. If they had looked more carefully at the image recommendations, they would have noticed a lot more going on inside the bones which would have changed the course followed drastically.
Funny that, although the symptoms were getting worse, these daily exercises were greatly slowing down the progression of the disease and my posture was much better, and getting better still. Using my creative processes, I was able to adapt to my disability by working around the areas of my body that no longer functioned properly. I became somewhat of an expert at this and to this day I am still able to get many things done. I can no longer work due to spinal burning that slowly creeps in and expands as my workday went on. After 3 to 4 hours, I could no longer continue due to the severity of the pain and the constant repetitive motion of my job. Once this thing started it would take hours to recline my body and provide enough rest to let the pain dissipate. If I worked too long through the pain and continued to bear with it, forcing the issue, it would take that much longer to get it back to normal. If I went too far working through it, the pain would last almost 24 hours until I rested enough to stop it. The next day, the process would begin again.
Working a set job is no longer possible because the demands of the work do not allow for adapting to it, whereas the chores I do at home, I can allow the movement to build to a certain point, usually 45 minutes to an hour, and rest enough to settle the pain down, allowing me to continue with the task. Also, I have learned to adapt the movements, change timing and become ergonomic to get things done. At home I am allowed this because I'm the one who dictates when there is work and when there is rest. This is a positive and productive attitude to a negative situation, and it is, but if people were to see me and measure my work, they would say I seemed fine to them. I look good, I don't ever complain or talk about my pain and get more done than most people around me.
The question becomes, do I put on a show for people, walk with a cane, moan loudly when it hurts, stay in bed, or do I continue with adapting towards a productive and happy life. We've all seen people who do the former and eventually it becomes their routine, their way of life. They've adapted to their illness by embellishing it, and who can blame them. It's all about validation.
I am writing this so as to explain in no uncertain terms and in my own words what it's like to spend a decade living with a hidden illness. I hope this somehow ends up being published so others who are going through this, or those who are close to them, or maybe care for them, might better understand what it's like. I decided early on that I would not fall into negatives, I would never fake it, I wasn't looking for sympathy. I would strive to be me, living for as much quality of life as I could get to continue to nurture my truth despite constant pain.
I was wrong. I fell in anyway, without knowing it, which, once I came through it became the book, "Journey through Pain, the Walk for Healing" and the birth of the true Pain Cycle.
Another quandary. Trying to be me despite pain is what allows pain to seep in slowly and take over. Small, seemingly minor decisions add up to affect a change in your personality and it is those who aren't as close to you that can see it the best, yet, after learning this and even to go as far as writing the book on the subject, I still get treated wrong.
I recently found a possible answer to one of my medical situations online, as usual by accident. I was looking up symptoms of liver problems in case Paget's is going to attack an organ next, which most likely would be my liver. It may have also answered the weakness and fatigue issues, the nausea and lethargic symptoms I have been experiencing. Combining liver with Paget's I saw a report on Extramedullary Hemetapoesis, or EMH, about a patient with Paget's having a tumorous mass on the thoracic vertebrae. Wow!
As I studied I began to realize that I would be the only one excited about this. Alone again on my island. Most people wouldn't care or it would be too deep for them. Others would think I was over involved or still consumed with my nonexistent medical issues and obsessions. Most of my doctors would either pass it off as though that's not my problem or Paget's just doesn't do this, or maybe they would be just too busy, or even just plain ego conflicted. "No patient will be smarter than a Doctor!"
I will continue to research, however, because even if it turns out not to be EMH, my personal education will be enhanced and I will be one more level up on its understanding. I will be very careful not to self-diagnosis, or to become emotionally or personally involved with the research (though I will still be accused of this), or to believe I'm an expert studying anything online. It's just that I get excited when I find possible answers and I should get excited. I wish someone on the medical team could get this excited over research they've done. It's just another quandary that goes with the enigma. Alone on our island we should continue to be ourselves and celebrate anything we can. Maybe someday when we say we have a hidden illness others will understand and support us.
Maybe someday doctors will be like the doctor on the TV show "House" who has a staff of researchers around surround his patient and spend all of heir time, led by House, determined to find an answer to help his patient. Then maybe the doctor would be happy to have another researcher helping and maybe they would give us some direction to the research and invite us onto the team. Dreaming is good, but don't count on it.
Another problem with a hidden illness, which may or may not be strictly personal to me, is the problem of retro-activity. Most of the time, if I'm feeling pretty good, I'm able to perform functions like cooking or cleaning or moving light boxes or even laundry. Since the beginnings of my back problem in 1990, this has been the case. It always had a payback and this was paid back to me in what seemed to be directly relevant to the amount of physical activity I performed. In the beginning it was retroactive 3 to 4 days later. Now it's 3 to 4 hours later. Before it was a big problem because if I felt good if I could do things, very physical things for 2 to 3 days before it would catch up to me and forced me to lay down. I would always overdo it and pay a bigger price, which took me years to understand. A lot of people can't understand this and I've paid this price too. They would see me on a good day cooking or lifting or playing with my kids and they would think, (or say, usually behind my back,) "he says is back as hurt but look at him, he seems fine to me." or "if you can lift that then you can work.", or,"I think he's just looking for an excuse to be lazy." Then of course the worst one, "You are hereby denied services ( Social security benefits, disability status, etc.), Its plain to see that if you can do this cooking and cleaning, etc., you can work."
I would like very much to clear this up on behalf of myself and millions of others.
You are ignorant of the situation!
Now, don't take it personally. We were all ignorant at one time, except, in my case my ignorance caused me horrific pain and my ignorance of others gossip or my not knowing the rules of the system cost me everything I held dear, my job and income, my insurance, my homes and even my children. At least your ignorance only cost you some pain to your ego.
Education however can fix this for both of us. I can start over with a new understanding, you can sit back and listen. Every time I did something physical I paid for it later. I only did physical things because I had to. Things had to get done. I came from a physical background, playing four major sports till I got hurt at the age of 35. Mountain climbing with 80 pound packs. Hiking miles and miles. Working in restaurants for 20 years. Construction, printing, on and on, it took me awhile to accept my sedentary life. Plus, I was not ever lazy. I worked hard for 34 years. I was a single dad for 10 years! I don't ever plan to stop working. I mistakenly thought that Social Security was a supplemental paycheck to cover you till you got back to work. In my case, in the beginning, I could work for so many weeks at a time, then the retroactive pain spasms would happen. It would take three weeks, from a walker to a cane to back to working. By then I would be looking for a new job and starting over. Every single job I had for 10 years ended this way!
Social Security would say "if you keep working you can't get benefits." I naively thought I earned these benefits. I thought it would cover me until my back would heal from the retroactive pain. Again, my ignorance cost me everything. Including my reputation, my pride, my identity and eventually, my spirit. So, before you give an opinion to someone else or even think it to yourself, remember, your friend or coworker or loved one is probably on the way down the tubes, is very confused and is about to lose the most precious thing anyone could lose, their self identity! Losing one's self identity and self worth is devastating. Changing identities from a physically active provider and producer, to a sedate, laid back, easygoing, sleep a lot, painful, troubled provider and somewhat producer, just isn't easy. This is the time we need our support people's understanding, love and best yet, like. Yes, "like". Those people who were there for me, who stood by me and loved me or supported me never lost the idea of "like". This means that they trusted me.
They knew I was trying very hard to keep being me. They also knew I was going through a life changing battle to keep things sane while I learned to live with constant pain. The way they supported me was by learning along with me. By being the people I could bounce things off, and by being the ones to question me. Not passive aggressively trying to make their point, but by posing questions that we both needed the answers to. I'm always asked by spouses and friends and loved ones of pain patients, "what can I do to show my support? I don't want to baby him. If I see him resting too much or mining and running too much, I just want to stop him. That's not who he used to be. That's not the real person I know and love. What should I do?"
The answer is quite simple: " love him, like him, and learn along with him". There is much to learn. The biggest, most important thing is, damaging vs. non damaging pain. You might think," I wish he would get up and I don't know, clean the kitchen or something. He needs exercise, movement to contribute." You may be absolutely right, in concept, and dangerously wrong in detail. Everyone's affliction, illness or injury is different. Personal to the specific patient and so is the healing process. What you are both learning, for the next many years is what is good for the patient and what is bad. good means painful but temporary. Even the retroactive pain. Good usually means, rebuilding, strengthening, stretching and moving. A painful, slow process but pain that will go away.
Bad means damaging. Damaging means permanently hurting soft issues like muscles, tendons, nerves etc., or hard tissues like bones, cartilage, and the worst damage of all, emotional, such as self issues like identity, worth, etc. For instance, at one point in my healing process my posture became a very important issue. I knew that walking was good for me so I was right to think I should walk as much as possible, but, I was walking the wrong way. My back was slowly bending or hunching ever so slightly more and more, almost unnoticeable. Because I had a small, almost insignificant compression fracture on the vertebra where the bend was, I was in danger of severe damage to my spine, ribs, lungs and nerves, so you can see, walking is a good thing. It is easy to say "Cmon, get up and walk some more, you need to," but what if it led to a punctured lung, or even worse, nerve damage or paralysis! Would you want to take responsibility for hurting the patient or your loved one? You see, we all need to learn what is damaging .vs. what is not damaging. What is good and what is bad for the patient. If you care for the sick or injured person then you both need to learn together, ask questions, research everything. Help each other to become caregiver and patient for the best for both. Love, like, and learn together. Stretching and movement are good for us all, but you must learn the proper methods so as not to cause damage. I don't care who you are or what your background is, you must attack this, both caregiver and patient, from scratch, as if you know nothing. Start with learning exactly what the injury or illness is, what are the immediate limits, things to avoid completely and what movements are possible, approaching it slowly so as not to damage anything
I can't tell you how many people, doctors and professionals alike, who were willing and wanting to help me with their professional knowledge and abilities, to heal, but never asked me for the history or medical report of my condition. They just assumed that I was like 90% of their patients. That my muscles were stiff and unused,in need of stretching, massage, or manipulations, never knowing that my vertebrae had fractures. Only one doctor, out of at least 20 that I was referred to by other doctors, or well meaning friends, ever said to me,"I can't help you with this until I see some recent reports or pictures. My god, I could cripple you! I could cause permanent damage to your spine. I don't know why they sent you here without records." Yes, only one. Thank God I didn't go to the others. At that time, in the beginning, we didn't know there were fractures. I was being treated and diagnosed with a low back injury. We all made a lot of mistakes and I was accused of being an unruly patient because their treatments were making things worse. A bone scan would clear it up quickly and had a lot of us wiping our brow and thanking God we didn't cause any permanent damage, at least none that anyone would take any responsibility for. So, as a caregiver or a patient, approach things slowly, carefully, well researched, because I don't think you would want that responsibility either.
As you can see, any illness, but especially a hidden illness needs a lot of compassion. There's a lot to learn and a lot to understand. Most of us, that's hundreds of thousands of us, have had doctors say to our face that we are faking it, that we're just drug addicts trying to get stronger drugs to feed our habit, that we are liars, and cheaters, trying to get a handout from the system so we can avoid working. They've actually put these slanderous statements in our reports. The last thing my primary care doctor In Boston said to me as he was about to retire, a day that his simple range of motion test had hurt my spine and caused severe pain, a day that he found out about my diagnosis of Paget's disease and Spondylitis, he said, "I think you 're just another back pain sufferer, a drama queen looking for attention. I've seen this 100 times. I think you're faking your pain and I think you have a psychological problem and you should seek counseling for pain and drug addiction. At any rate, good luck." He walked away with his coat and hat and hand, leaving me on the floor of the exam room in a pile of sweat trying to calm down from his hitting the sweet spot in my spine. I told my pain doctor about this and he said, "He's just old school. There's a lot of his kind still in the business, still treating patients from the standpoint that they're just faking it, but many of them are retirement age, and eventually they will leave the business of pain treatment and be replaced by doctors who are more caring, more understanding." I didn't bring up what I had faced in Colorado with some of the younger group of doctors who actually ran pain and spine clinics. All too common.
Actually, if professionals were required to perform their duties expertly, like I had to in all of my minimum wage jobs, if they faced being yelled at, humiliated, written up or fired for failing to be thorough, or when they neglected to notice factors that would certainly have changed their diagnoses, maybe then a lot of these mishaps would stop. In my case, every time someone misdiagnosed, they had been faxed documents that should have been noticed.
For example, if I was a drug addicted liar, where was the string of prescribing doctors that I would have had to shop? If I was suffering from anxiety, somatization, or an unusual obsession to the fear of pain, not as severe as my mind thought it was, how could I pass a bunch of independent anxiety testing over three years? What about the bone test that recommended looking for Paget's disease four years before I was diagnosed? Or sometimes just some "Sherlock Holmes" common sense would be a good idea to separate the true pain and suffering from the fringe element. People, especially professionals, shouldn't be so quick to jump to opinions without first doing some simple homework, like say, thinking.
It makes them look stupid, an embarrassment to society, and they should be ashamed of themselves knowing the real harm that comes to people when supposedly intelligent opinionators spout their mouths behind the patient's back thereby destroying real things in these innocent people's lives. For example, I may look fine but has anyone noticed I never use my left arm above the elbow? Or that I started wearing suspenders instead of a belt because I can't tuck my shirt in or adjust my pants? This may be too much to ask, after all, it requires some actual thinking through some detail observations. But what about obvious ones? Those doctors who thought I suffered from anxiety never recommended a counselor. They never discussed going to less addictive, non narcotic drugs as an alternative and those who were supposed to be my friends and loved ones, those closest to me, never thought to ask me flat out, "Tell me about these diseases. How are they affecting you?"
Yes, it is all human nature, but how about the very simple question that all opinionators should ask themselves before causing others so much heartache - "What if I'm wrong?"
First, what negatives will arise if you simply believe the patient? Will it drastically change your life or cause you a lot more work? I cannot believe how many patients will marry or become very loyal to a clinic whose premise with patients is, "As soon as they walk in the door and say they are in pain, we believe them." But you can see, with all the crap a pain sufferer has to put up with, excluding the actual pain, having anyone simply believe them would become paramount to their treatment. By not believing them and trying to impose you're own will or agenda on the patient, whatever gains you may see for yourself or believe that you are actually getting, the patient loses much more, and remember, it's called care-giving, not care-taking. In my case, a little belief, especially by supposed professionals in the workplace, insurance representatives, doctors, Social security judges, lawyers, friends and family, would have saved, not only my integrity, but some scars my children will carry the rest of their lives.
I will always view those who wouldn't believe me or who acted on their own behalf, not mine, as directly attacking my family, my children. Now, I can I look at the whole situation in disgust, at a system that's not out to protect me or mine, that cares very little for my 34 years of service and taxes, or many years of community volunteering, my voluntary leadership tasks while my generally helping people whenever I could. My honesty and integrity throughout my life, especially my adult life, have been trashed, all because people found it easier to try and disprove me rather than just accepting that I may be right or may be telling the truth. Anyone reading this should think hard about who benefits and whose life gets severely trashed by your actions and decisions.
And remember, I speak about the illness and injury in general. Times it by 10 for those of us with hidden illnesses. We should reward people for being honest, for not using canes and crutches (unless it is necessary), for presenting our true selves to others regardless of how its perceived or understood. I never knew what retroactive pain was but I never acted sick if I didn't feel sick. When I felt sick I tried to keep it away from others, tried not to burden them with it. When things needed to be done and there was no one else to do it, I tried to do it without moan, groan or complaint. I never knew that these attributes would cause me to be punished or scorned or persecuted. And people wonder why I'm such a loner. So, if you're dealing with a friend or loved one, or just a patient with an illness, especially if they, " look fine to me," remember,
"Love, like, and learning" together goes a long way to quality of life, sometimes through generations.