Yes Dr, I will take that as you prescribe despite the horrible side effects stopping me living my life.
How often have you found yourself doing this? Do you know that you can speak up and disagree with your Dr or healthcare provider.
In the UK when it comes to healthcare traditionally we are not very good at speaking up for ourselves. We often go with what the Dr or Nurse says because they have done the training and what they know is best. This is a very antiquated view now I think yet we still want to please our Dr’s so will do what they say and take what the prescribe. We often think if we don’t do this we are seen as a difficult patient and no one wants to be a difficult patient do they!
Speaking up for yourself can be daunting, I remember thinking I can’t question a Dr, they went to medical school for 6 years and have done countless more years honing their skills in whatever speciality they chose so who am I to question them. I only live with the condition I don’t (or didnt) know the physiology behind my diseases or the best treatments for them. This is what the Dr’s know.
I wish 14 years ago I knew what I know now. I have written about this before but 14 years ago my Drs had me on prednisilone (which frustratingly I am still on) and kept weaning it down as they did not want me on it long term. I didnt understand the long term side effects of prednisilone at the time but was getting fed up of feeling good while on higher doses of pred but then start feeling awful as the dose reduced and came off it. It was like a constant rollercoaster. My answer to this was just not to take the pred. I didnt feel good not taking it but at least I was not feeling great to then have that feeling taken away and I would go back to my life being put on hold. I found that I preferred to know where I was with my lungs and adapt to life where my lungs were not that great. This did not work out well for me on several fronts:
- My health was awful, I couldn’t do anything, I was missing out on life, friends, sport, uni.
- My mental health was at an all time low because I couldn’t do anything with my friends and just be a normal student, but I could not cope with being able to do things with my friends while on a high dose of pred for it to then be taken away again.
- I was lying to my medical team, how could they trust me if I was not doing what they wanted me to do.
It all changed when I managed to get a chest infection and put off going to the Dr. I ended up in intensive care really poorly. I was questioned by my consultant about why I waited a long time to get seen and go to hospital and why did I not put up my prednisilone according to my care plan when my peak flow dropped.
It was then that I opened up to the Dr and said what I had been doing and why. I explained that I didnt like knowing that while on a high dose I would feel well and be able to do stuff and then the dose would be reduced and I would not be able to things because of my chest so would prefer to just not know what it was like as it was a false sense of reality that was just then taken away.
Once I recovered from that hospital admission I had a meeting with my consultant and asthma nurse to have a frank discussion about my asthma, asthma care, medication regime and care plan. This was the first time I felt that it was ok to speak up and say to them what was important to me in life and what I wanted to be able to do etc. It was great as we were able to work out a lot of things and while I had to make compromises as it is not possible to do everything I wanted to be able to do but now my consultant really understood me as a person and our working relationship grew because I was able to be honest. I was also able to bring suggestions to him about new medications I had heard about. It became a 2 way conversation which I have now always made sure I have with all my Drs and nurses involved in my care.
It can be daunting at first to advocate for yourself but I can assure you it is the best thing you can do. Drs know conditions and medications but they don’t know you and your life unless you speak to them about it. We didnt choose to develop chronic health conditions but we do choose the life we want to lead and this includes how we manage our health, what medications we are prepared to tolerate and what we are not. Some side effects may be ok for some to put up with but not others depending on life situations. For me just now I don’t mind my dose of prednisilone changing quite a lot because I am not working (I find that when the dose changes my insomnia is so much worse) but if I was working then I would speak to my Dr about not having the dose fluctuate so often so I could try and manage my insomnia better.
Self advocating is not about arguing to get your own way but it is allowing your medical team to work with you to get the best management plan for your condition and your life. If you as a patient are involved in the decisions about your care and agree with them then it is highly likely you will be a more compliant patient with medication compared to a patient being told what to do and what to take when who is less likely to comply because it is not what they want to do or it does not fit in with their life. No one likes being told what to do but if we are involved we are more likely to follow instruction.
It is important to remember that while self advocating is good, not everyone feels comfortable doing it and would prefer to just do as the medical professionals say. That is fine too.
I am so glad that I was able to learn that my voice as a patient is just as important. I do have knowledge, I am an expert patient in my own health and my conditions. I am allowed to bring my thoughts to the table when Im in appointments as I need to try and get the best management for my health possible.
I will leave it here but I would say self advocating does not make you a difficult patient, it makes you a patient that cares about their health. This is why I self advocate and why I am also a wider health advocate and will advocate for various health conditions like severe asthma and allergies.