Ranting post on last chance doctors
I usually think a bit before writing here, which is probably the reason why it has been so empty for the first half of the year... BUT now I just need to rant write about something that happened yesterday, so no filtering or thinking first, just writing and then I will come to some conclusions later...
OK, first you need to know that my mam has had Chronic Fatigue Syndrome (CSF) and fibromyalgia for the last 16 years and it has changed her life from very active and fulfilled to a juggling game of a limited amount of energy a day and having to make hard choices on where to spend that little she has. I have been there every step of the way, changing from a pretty egocentric 21 year old (I need my old mam back now!) to a co-active coach 37 year old. The one thing that has never changed in those 16 years is my love for her, just the way she is. I might have missed my old mam in the first years but our band is now stronger than ever.
Yesterday we went to a doctor who is here in Belgium considered as the last chance doctor for people with CFS. He claims all the CFS diagnoses are just lazy diagnoses and that with more investigation you can find physical malfunctions in CFS patients bodies like lupus, lack of minerals, vitamins etc He has written a book and when my mam read that hope flared up and so we made an appointment and went there yesterday. I usually go with her on big appointments because her memory is also very limited so two pair of ears is always better, especially on the first appointment when essential information is given. When we came into the waiting room there were several people sitting there with IV's. More on that later. When we got to see the doctor he said 'I am listening' and so my mam told about everything she has, the things she has tried, the medication she takes etc. While she was telling her story I was looking at this doctor and 1) he did not look at her at all 2) he was filling and signing lab forms (not for her). That is to me plain RUDE! Yes, I know he is the last chance doctor and that makes him incredibly powerful and pretty much able to do whatever the f*** (I normally don't swear but now I just have to) he wants. But you seriously don't want to listen to your patients? You do not want to show a single ounce of consideration, care or connection at all? Really? If it would have been up to me I would have stormed out right away but it is not my health we are playing with here, so I just tried to stay calm and be there for my mam.The interesting part was that when she finished her story he asked me if I was also a patient. Now this is interesting! Because there I am sitting being plain angry about so much rudeness and inconsideration and he wants to turn me into a patient too? Interesting no? At first I was too insulted to think about it clearly but now I see a 'let me make you small and powerless too' mechanism here. But not with me my friend! Not going to work! Powerful woman in font of you is not going to be turned into anything else than that!
Anyway, let's first finish the story before we go into analysis. Her blood and urine have to be analysed to the bone and then I am sure in three weeks when we have to go back he will have found something he can treat.
I cannot hide my emotions for my mam so she knew I did not like this guy at all and she has her reservations but of course she wants to be healthy and fit again and so she still puts her hope in having something that can be treated with an IV or medication. I want her to be healthy and fit too, really, but boy do I dislike this doctor!
Why? Well first of all because my intuition screamed 'disrespect' at me the minute we entered the waiting room. Since when is it okay to put sick people with IV's in a busy waiting room where people come in and out all the time? Has this guy never heard about things like privacy, consideration and not to mention vulnerability and shame? I find it the highest degree of disrespect for vulnerable human beings to put them in some kind of fish tank for everyone to look at them. Is this patient zoo? Tickets on sale soon? I am not going to tell you the price of these IV's but if you knew you would expect a 5 star hotel/patient room for every patient! At least! Not a hard chair in patient zoo!
Then not listening to your patients? And I have learned enough about listening in the last 10 months training to be a coach to know when someone is or is not listening, so I just know he was listening to himself (level 1, I still need to sign these forms, let me do it now while this woman is babbling) and NOT to the story he should listen to! I know doctors are scientists who are trained to look for physical malfunctions but would a bit of human connection and consideration kill that scientist mind? Are they only capable of diagnosing when being inconsiderate and judgmental right from the start? Do they learn that in some class on how to deal with patients? Make sure your patient knows and feels you could not care less and that every doctor they have ever seen before was a total idiot who had no idea what he or she was doing? Well, then I think there is a lot of work to be done! Patients are not only bodies! They also have a mind, soul and heart and those parts of them also need something from their doctor! Things like safety and explanation of what you do, genuine interest and care! How hard can it be? This is a HUMAN thing, not a degree or training thing! You don't need 9 years of university study and specialization to be able to genuine listen to someone's story and care about it! You don't even have to say it, you can just show it!
In conclusion: I now know how strong I really believe in the whole person corner stone of the co-active coaching model and that respect, care and connection are three of my core values. Everything that happened yesterday was just WRONG to me! If this guy would be the last doctor on earth, I would not want to be treated by him! Now you probably think: 'you say that now, but if you would be the one suffering and dying, you would speak differently!' Maybe so, but that does not change the fact that I want to be treated like a person by the people I have to put my trust in and that I expect them to treat me with the same care and consideration I treat people with. Treat people the way you want to be treated seems like a terrific guideline for doctors to me! Would you as a doctor want to have your life changing IV in a patient zoo? Would you want a doctor that does not listen or care? They always say doctors are the worst patients, so I am pretty sure the answer to those questions would be a very strong NO. Well, it is also a strong NO for me! I do not want my loved ones to be treated this way either! And the fact that they have a disease no other doctor is interested in does not change that and it does not give you the right to use the despair of people to treat them like shit!
But it happens because these CFS patients are so vulnerable and tired that none of them is ever going to complain let alone take action of any kind! There is not going to be a march on Brussels any time soon to ask for decent treatment and serious scientific research because they are all to exhausted to make if properly through the day let alone take some kind of action. So the most vulnerable people are treated the worst because everyone knows they don't have energy for protest! Well, in this kind of society I do not want to live! Change is needed and it is needed NOW! I don't know yet what I am going to do but I have to do something. I cannot just sit here and rant and not do anything about it... I have to think about it but I am sure I will come up with something I can do, using the skills and resources I have and most important the enormous CONNECTION I feel to these wonderful people. And I have organized marches on Brussels before so I can do it again if I really want and need to! Let this be a warning for shitty doctors all over and one in particular: ' Do not underestimate the power of the loved ones of your patients! Everyone has at least someone in their life that is willing to go all the way to protect them!' :-)
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