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In the last two months I have had some surprising light bulb moments I guess you would say.
Last month I went to the hospital for my infusion as usual. For the first time in the last year and a bit I was sitting between two other women with Rheumatoid Arthritis. We were also in a section of the infusion room that only had the three recliners. Now I have always found it funny that Doctors and patients in hospital all seem to think that those little curtains actually provide any privacy for a conversation. I guess it is a false impression that many people need, or want to believe. I sat in my middle recliner waiting for my infusion to start and just couldn’t stop myself from listening. What I heard disturbed me a great deal.
The older lady who was there for an Actemra (tocilizumab) Infusion, did not actually know what she was there to get. I may be a bit hyper aware of my medications, yes, but I do think it is vitally important for US the Patients to know what we are taking and why. This woman, who I am sure is lovely, had no clue what Actemra was, or why she was taking it. Now when I had my brief experience with Actemra I knew everything I could about it. I knew that it was cultivated in the uterus’s of hamsters, and that is was a totally man made substance. I knew that because it was a totally man made substance an allergic reaction was very unlikely and would be very rare. I knew the possible side effects and on and on and on. I knew it, because I felt it was important to know what I was taking and why. Also to know the most common problems I might have from it, oh and more important the problems that I need to seek immediate medical help for. Again I say, that yes I may be hyper aware. To go on with this woman’s experience. She could not list her medications that she took daily. The doctors and nurses had to tell her what she was on, and explain why. Now she was not “Newly” on any of these medications and yet she still didn’t know. To make matters worse she did not think it was important to tell the doctors and nurses that she was on anti-biotics for a current infection. Oh and lets not forget she could not tell them how long she had been on the anti-biotics. She gave them several different answers for those questions. In the end they had to do a full exam on this poor lady and call several different departments to find out if and when she could have her infusion. During the whole saga the lovely woman was more worried about if she could or could not fly with an ear infection. When told she could not have her infusion and that she would have to come back in two weeks to get it, she said, but no I am going out of town. After the doctor trying to explain things to her she still just didn’t get it. She kept asking if she could fly with the ear infection. Never once did her overall health and the status of her Rheumatoid Arthritis enter into her part of the conversation. The doctor spent at least an hour if not more trying to explain to her the problems and why she needed to come back in two weeks. She also had to explain to her why she needed to take more anti-biotics.
For me it was a painful conversation to listen to. Yet sitting less than a yard away I couldn’t not listen to it. I would have put earphones in, but was still waiting for my infusion to begin.
Now onto the lady on the other side of me. Again she didn’t know the full list of medications, or why she was on them. Both these ladies were on the same medications as me, give or take a couple. Neither of them knew what the medications were for. They didn’t know what the anti-depressant was for, or the blood pressure medication. They were totally ignorant of the conditions they had as well as the medications they had been prescribed. Now I will tell you this woman seemed to be newer to the whole disease that is Rheumatoid Arthritis and she did have her daughter there to help her. She was there for her first Orencia infusion. I totally understand how daunting that can be. I started up a conversation with her daughter about RA and Orencia. I was there for my Orencia infusion after all. Neither of them knew when they could expect improvements with this infusion. That is one of the very first thing my Rheumatologist told me when starting Orencia. She also told me that you get the most benefits from it once you have been on it for a year. Again we had a woman who was totally ignorant of her disease and the care she was receiving.
The thing that has been bothering me since that day is this. How can we expect our doctors to take us seriously if we don’t bother to educate ourselves. We have a disease that is drastically misunderstood. We have doctors who don’t have the knowledge they should. We have carers that don’t understand. We have politicians and insurance companies making decisions for us. And yet there are some of us, who can’t be bothered to even learn what medications they are on. We have patients suffering and yet they don’t understand why. We have a disease that is misunderstood, and taken for granted. We are taking medications that at times cause more harm than good. We have a disease that is serous enough that we are put on Chemotherapy, but we have patients who don’t see the seriousness of all those things.
SO many of us are fighting for recognition, for better understand, for AWARENESS… How can we expect to get those things, when there are those of us who refuse to even educate themselves first and foremost. We need to be our own health advocate. We need to KNOW what this disease is doing to our bodies. We need to learn the ramifications of NOT Medicating ourselves, as well as the ramifications of Medicating ourselves. We can’t expect change, when we are not willing to change ourselves. For years now I have thought, WHY BOTHER, when it came to Awareness. I mean I have a good Health Care team. I have a Rheumatologist who Works with me. I have a GO who stays informed. If I have question that he does not know the answers to, he gets on the computer while I am with him, and finds them. He gives me the supporting medications I need. I deals with my Pain Management. I have a Husband/Carer who listens to me. Why do I need to worry about Awareness.
Because there are people out there who are not as lucky as I am. Because TOO MANY people are going 2/3/5/10 years from onset of symptoms to diagnosis. Because we all need to be given the best chance of remission.
SIMPLY BECAUSE WE ALL DESERVE IT!!!
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5 comments… add one
Thank you for your article.
My rheumatologist asks every new patient to bring a family member or friend to the first diagnostic meeting, and engages an army of nurses to take each call. He also passes out enormous packets of material for each patient to read and will take as much time as the patient needs for questions. Yet most of the patient feed back I read about his practice decries his lack of bedside manner.
RA is a chronic illness which involves the whole body, and the doctors and drugs can only stop the progression and minimize the pain. The patient has to be responsible for educating herself about the disease, the drugs, the comorbid conditions, the lifestyle choices, etc. that go with managing the illness.
Those ladies you discussed (and many more like them) are the reason a rheumatologist develops a cold bedside manner. If they won’t do their part, it make it hard to him to do his.
Learned helplessness never got anyone better.
Excellent post. I totally agree with you on this. I know so much about my disease and my medications and I have made decisions about whether to take it or not and I keep in mind that any side-effects might go away after a couple of weeks and patience is key.
I don’t know how anyone could know so little about what they have. This is their health and their lives, it’s so important.
As a sufferer of Rheumatoid Arthritis, I am very educated about the disease as well as many of the medications that can be and have been prescribed to me. What concerns me is our elderly who have to deal with this illness. I am 32 years old and it’s easy for me to research online information about rheumatoid arthritis, medications for it, side effects, and other illnesses or autoimmune diseases that can be associated with RA. Older people are usually not technology savvy like you or I. They tend to rely more on the doctor and hope that he/she knows what they are talking about. Unfortunately, we leave our vulnerable older RA suffers confused and uneducated and look and listen in amazement that they are so clueless about what’s going on. Education today is totally different from what it was decades ago and let’s face it there are many people out there afraid to ask the doctor questions because they believe it’s a doctor they are talking to he/she is the expert, “what do I know?” Many times doctors tell you what’s going on but they speak in what I call, “doctor language.” It’s important for a doctor to speak to a patient on the patient’s level so they can better understand what’s going on.
This situation has been a concern for me for a while. I’ve been trying to figure out a way to have RA meeting in my town to help educate elderly people as well as others in my community on Rheumatoid Arthritis. I’ve attended such a meeting in Sacramento, CA which was very beneficial to me. This meeting was held by the Arthritis Foundation president and CEO and had a renowned rheumatologist as a guest speaker. People were allowed to ask both of them questions as well as answer questions that the doctors had for them.
I am a disabled RN. I’ve had LADA (Latent Autoimmune Diabetes in Adults) for 12 years and RA/PsA/Sjogren’s/Lumbar Spondylarhtropathy for 3 years. I cannot tell you how important it is for patients to be aware of their medications, why it prescribed, and the dose. I use to give chemotherapy, now I take it. I always appreciated a patient who had a typed medication list and medical history now I get to see the smile on the nurses’ face when I hand them my typed list! I was always amazed at people who came into a clinical setting not knowing their medications. Sometimes I think it’s an act of rebellion out of denial because they don’t want to know and the rest of the time, I think it’s just lack of education. Thanks for bringing this very important topic to the group.