Recently I read a letter from a Doctor to Chronic Pain patients. It was an open and honest letter. It did help clarify how the Medical Establishment feels about their profession and our situation. I did feel it necessary to respond to the letter. Not in an angry or defensive way, as I know that was not the intent of the letter initially written. This is merely an explanation of my point of view as a patient.
I am writing this letter to you as a Chronic Neuropathic Pain patient, who has not received a definitive diagnosis. I have been through pain clinics, tests, specialists, hospitals and many alternative therapies. I have had the privilege of having some fantastic Doctors and Therapists, who while have not cured me, have made my life bearable. To them, my family and I are ever so grateful. There have been other Doctors, who have made my life unbearable; treating me like a pariah, dismissing me, ignoring me and making me feel worthless. I truly believe that to effectively treat me, you must understand my point of view.
In this letter I use the term “we”, as many Chronic Patients with whom I have interacted, expressed the same emotions, experiences and frustrations as I. My explanation of how a patient feels does not represent all Chronic Patients, it is just based on my experience.
I would like to explain to you our point of view; outside the confines of an office, examination room or hospital. We understand the stress and responsibility you have in regards to our care. We know this is your profession, but this is our lives and to effectively treat us we need you to see our ‘real’ point of view. Please be aware these points are not accusatory, they are simply expressed to provide some insight into our behaviour.
- We are sitting before you, probably after seeing many different specialists, doctors and therapists. We have probably had several tests like MRI’s, Scans or X-rays. We have been shuffled from one place to the next without any results. This has left us scared, confused, angry, tired and depressed. By the time we have seen you we may seem resistant, angry or apathetic, and quite frankly we are. Take being put on hold by a company, transferred to several different departments (being cut off and having to call back about 50 times), ignored or being treated rudely and amplify that by 1,000 and this is our life.
- We may come before you with research like articles, internet searches or information (new treatments, comments from friends and family etc.). This is not to discredit your knowledge or ability, this is us being proactive. So desperate are we to find a solution to our condition, we will take our fate into our own hands. We want to find an answer more than you do so we try to help ourselves and you. Please don’t dismiss the information we offer. We may have found something invaluable to you, as we are much more familiar with our case than you are because we live it.
- When speaking with us please try to watch your demeanour. This is not a criticism, we understand your job requires a lot of energy, patience and time; as patients we respect that. All of those who have been employed, know some days are easier than others and any job can tire you out. You may have had a difficult patient before us, or a personal situation which has made your day horrible. However, you get to go home at the end of the day and can leave us behind. We don’t. Before, during and after our visit with you; we are in pain. There is no drive home to decompress, there is no vacation, no pay, no awards, no recognition, no respite and no separation from us and our conditions. Imagine having your worst work day on record, every day for an indefinite period of time, that is our life. When you are with us, your very tone of voice, slight behaviours (nodding in agreement, looking in our eyes when discussing our case, etc.) affect us on such a deep level. So, if you need to take a deep breath before seeing us, or anything you can think of to make yourself aware of your actions will help us so much.
- If we seem agitated about you going on vacation or taking leave time, please understand we are not thinking “you don’t deserve vacation”, you do. The reason we get upset is, the amount of time you take off, directly affects our quality of life. Thereby, affecting our family, friends, co-workers and so on. The trickle down effect is much more impactful than you may realize. If you take a lot of vacation, it can tear our world apart. If you take quite a bit of vacation, we probably will have difficulty getting our medication, which renders us useless and suffering. Chronic Patients can’t go to walk in clinics, we can’t just go to the emergency room. We are entirely dependant on you; therefore our family is dependant on you, our co-workers are dependant on you, our children are dependant on you. So, you can see, we respect your vacation time, but please consider this – there is no vacation for us. All we ask, is to be considered when you are planning your time off – let us know when to reach you – we will make any accommodations necessary.
- Delayed or cancelled appointments may make us hostile. We may seem uncooperative or impatient with your staff. Please understand, just sitting in an office for an extended period of time is physically difficult for us. Some of us have had to arrange child care or schedules from work, we have had to drive or travel to you, which is painful. We may be awaiting an answer to our situation, so we are pensive and tense. We also know that if we were to be late for you or miss an appointment, it would cost us money and/or lost care. However, we also know you may have switched appointments to allow us in, or have taken more than normal time to explain our results or situation. Inherently we know you are busy and trying to juggle many things at one time, however our bodies may cause us to react emotionally and it may come out the wrong way. the majority of patients, by saying “Sorry to keep you waiting” will make us feel much better and diffuse hostility from the patient quickly.
- You chose this job. We did not. When you entered medical school, you were probably thinking of your interest in the science itself. You considered helping people change their lives or at least improve them. There was an excitement about the studies, research, technologies and the like. Your job is respected and admired. We are not. Our condition is a full time job, that we did not ask for.
- As most of us, have researched our conditions and had our own mini medical school, we appreciate the clinical aspect of medicine. We too have been wonderstruck at what the body is capable of doing. You are able to view these things with an objective, scientific eye. We need you to recognize that while we too appreciate the science, we are not fully able to separate science and emotion. We just need you to remember that while we are cases, we are also and more importantly, people.
- Please listen to us, I mean really listen to us. In order to fully treat the condition, you must be able to understand the person. Each of us are different, even if we have the same disease. Some of us, may need to vent, some not. Some may need to have our hands held, some don’t. While, we do understand you are not able to fully deal with all of our issues, simply listening goes a long way.
- Understand that while we do want results and a cure, we know you may not be able to provide one. We may frustrate you professionally, because you can’t solve the problem. We get that. The one thing you need to understand, I mean really understand, is what we really need is HOPE. We need you to not give up on us. When doctors immediately refer us to another doctor or give us a flimsy diagnosis, we know why. We know the majority of doctors are afraid of us and don’t want us. You have absolutely no idea how painful it is when this happens. I can’t tell you how many of us, have walked out of an office – hoping that going in someone was going to care enough to keep us, help us, see us through – to be pushed out the door – deflated, abandoned and hopeless. We stand there with our hands outstretched, wondering ‘Why?”. Why won’t someone help us? Once we have left your office, you don’t really need to consider us anymore, but I would like you to. Imagine what it would be like to walk in somewhere – vulnerable with hope that your pain would FINALLY be gone – to be turned out and made to feel worthless. Don’t be so quick to rid yourself of us based on whether you can immediately cure us or not. Most of us have been doing this schtick for an extended stay, so we understand it won’t be solved in a minute. Try to consider; sticking with us for a while, would make us feel like we matter, we are not crazy, we are not making it up and our condition is real and you truly want to get us better. We need to know that someone out there recognizes us and that at one point it will end.
- Many of us are dependant on another for income and/or we are unable to work. This is an enormous amount of stress on us and the family. It doesn’t matter what country (Canada, US, UK etc), we are paying an enormous amount of money to help us get better. Some of us, are able to afford alternative therapies (privately paid for or partly paid by insurance), some are not. All the therapies you suggest, mean more appointments and handling and cost. It is exhausting for us and those who surround us. We may seem reluctant to take the therapies because we are afraid, or because we can’t afford them and are left with medication as an option. Maybe we are so afraid to hope again, that this time, this therapy will work and it will end – to have the therapy fail like all the rest. The emotional roller coaster is a frightening ride. Please consider our individual cases when recommending therapies and understand our reaction may not be what you think it should be. This is not to say we don’t want your suggestions, but the knee jerk reaction may be caused by the above.
- Please know before our illness we were vibrant people who contributed to the world. We had jobs. We danced and laughed. We lived freely and fully. Now we are dependant, limited and isolated. You see us after the illness, you don’t know who we were before. You have no frame of reference to lean on when prescribing treatments/medication. Know that we have had so much ripped away from us, but we are still that person on the inside. Just because we are disabled, does not mean we are worthless, yet we are treated that way. We have been cheated and that makes us angry, depressed or dismissive. This may come across like we are upset with you, but we are not. You are the medical establishment who is supposed to make us better and you haven’t yet. Wouldn’t you feel some of those emotions if you were us?
These are just a few points to let you understand how we feel. I can name a few tips that would make us feel so much better and they don’t require a huge amount of money or a lot of extra time. They are simple suggestions and could go a long way in making us feel better.
- Read our case file before seeing us.
- If you kept us waiting, please say “Sorry, to keep you waiting”. This goes so far you have no idea.
- Let us talk. When we come in to see you for a consult, please ask “How are you?” and actually listen to the answer. You really have no idea how much that means.
- Call us by our names. Just saying our names a couple of times during the consult makes us feel valued. It may seem small, but it allows us to be patient AND person.
- Don’t be afraid of us. Think instead of us, as a cool case study. We may push you outside of your comfort zone. We may provide you with valuable learning experience. For the GP, we are an opportunity to do something other than annual physicals. Take us on with Gusto instead.
- Read the information we provide and don’t presume we are trying to tell you how to do your job; but that we have something of value to offer.
- When you are tired, stressed or just overall busy, try to remember that you impact our lives in such a deep way. When we leave, we are leaving with our pain – you are leaving us behind.
- Know that we don’t want to be there, we don’t want to bother you, we don’t want to stress you out……we would much rather be living full pain free lives.
- Have patience with us.
- When planning your vacation, office hours and staffing, know that it directly impacts our quality of life. Please remember us.
- Understand that every experience we have with the medical profession will impact our behaviour with the next doctor, hospital etc. So, if we are angry, it may not be with you, but the doctor we saw before you.
- Ask your office staff to have patience with us as well. We may take our hostility out on them, and we are truly sorry for that, but an appointment, test result, prescription renewal or communication is a very big deal to us. We understand their jobs are stressful, but they have our quality of life in their hands too and a missed document or a forgotten prescription renewal can wreak havoc on our lives.
These suggestions are based on 7 years of experience with Chronic Pain. Sometimes, just seeing my one Pain Doctor for 10 minutes, is better than any treatment I have had. He has inched me in between appointments when I have been desperate. He has called me by my name. Mostly he has treated me like a person. He has recognized ME, aside from the illness and let me know that I am not crazy, delusional or making it up. His office staff have been so wonderful to me, remembering my name, being calm when I have not, not bothering to ask me how I am when I am bawling like a 2 year old, giving me a simple smile. It has been essential to my survival with this condition. The full feeling of calm I experience once I have been there, goes a long way with my family too. They don’t feel like they have to take all the burden. I am recognized as Kathleen – who has Chronic Neuropathic Pain in that office, not the Pain Patient in exam 2.
So, here is my plea to you – remember that we aren’t just cases – we are people – and our lives are in your hands. Try to think back to why you got into medicine in the first place and view us as an exciting challenge not a burden. Wouldn’t you feel job satisfaction with the knowledge that you REALLY helped someone, simply by being kind and patient. Get to know us as people and it will make all the difference in the world. We will trust you and do what you need us to do – and therefore you can trust us. Positive interaction is nothing but a win – win situation for Doctor and Patient.
Thank you for reading,