Becoming or being assertive during chronic illness is something not to be mistaken or misused as rudeness or an abrupt manner. Being assertive involves finding the middle ground between passive and aggressive behaviour and trying not to cross the boundaries for either. A typical definition of the word assertive is stated below:
When I attended a two week pain management programme a couple of years ago at the age of 18, this was one of the key points and communication techniques they tried to implement into my routine. Not only in how I spoke to the professionals who were helping me whilst there, but to also take away with me when addressing my main team of doctors and specialists. I remember thinking to myself, 'I don't really understand how becoming assertive has got anything to do with being ill'. However, much to eighteen year old Nancy's dismay, I have come to surrender that it does actually play a rather big role. I had to learn to not be a push over in pushing myself to limits my body could not handle by saying yes to everything doctors asked of me, but to also reign in any abrupt manner when I possibly felt the need to say no.
I have found being assertive is one of the key factors when you are chronically ill. It does take time but it can help you mould into a more literate young adult too. Its a sense of taking control of the situation even though our pain may have such a hold over us. Ultimately when you know you will be spending a lifetime to and from hospital and doctors appointments, it can be the voice you never thought was inside of you to getting the medical attention you deserve. All whilst keeping a level head and your composure in your delivery of words. Manners cost nothing, that is something I have always been taught from a young age. I was overly passive in this sense, never wanting to offend anyone and to respect my elders.
Knowing you are going to be ill for a long span of time,or in my own case, have an illness that will affect me and perhaps become much worse throughout my life, I needed to become brave enough to speak up and be taken more seriously. Especially in cases such as these rare types of illnesses where doctors have such limited information and help to provide us with. There is a huge sense of the unknown around every corner. Speaking up for yourself will allow people to understand your limits, whilst giving the impression of self confidence and awareness, even if you don't perhaps feel like that deep down. I was a young women, but felt like an intimidated child in a world full of unexplained medical terms I had never heard of and specialists.
When it comes to being assertive during a chronic illness, I see it as standing up for myself in a dignified manner and what I believe is right on this journey during my medical appointments and illness related issues. Not being too timid or shy to express what I am really feeling and what I would like to happen in order to help me and the pain I am experiencing on a daily basis. There may come an anxiety with being assertive especially in some young people. It can almost seem frightening to speak your opinion whilst not wanting to seem too aggressive, rude or demanding at a young age. These are all qualities to avoid in your delivery of assertive communication. I was very much a people pleaser during the early years of being diagnosed, but the more I listen to my body and its limits the more in control I felt of a rubbish situation. After all, YOU are the key factor in expressing your limits and opinions because after all, YOU are the one that lives every minute and hour with the condition.
This particular method is also a massive factor of age. Would I have been this assertive a few years ago at 17? Definitely not, I made my mum do most of the talking. I felt weak as a person and extremely unconfident. I would sit there and only reply when spoken too because I felt young and as if I was not entitled to an opinion, despite knowing I lived in the pain. I wanted to be respectful to the professionals first and foremost. However, I have experienced that the longer you are ill and live with an illness the more you grow as a person and the more feelings and emotions you have towards your health issues. It makes you want to fight for a change in your life with pain in order to receive a better quality of life for yourself. During my time of being under paediatric doctors care, at first I would let my Mum do the talking and answer when I was spoken to by the professional. My confidence was at an almighty low, nobody could give me answers to our questions and it all felt very overwhelming. I just wanted to escape reality. In all honesty, I felt like a timid child who's opinion wasn't relevant because I assumed a doctor knew more about the condition than myself so I kept my opinion to myself. This is completely untrue and I often wish I had changed my communication skills sooner, whether you are 13 or 45 and experiencing pain and have an opinion based on first hand experience, please stress this to a doctor. No matter how foolish you may think the way you are describing it sounds. I remember saying I felt like my stomach had been poisoned and being laughed at by the doctors and students in the room, but I was glad they could see the seriousness in the way I delivered how I was feeling. I didn't laugh and I didn't cry, I just wanted for them to see how serious I felt about how difficult it was to deal with the pain.
Becoming assertive will always be an evolvement in a chronically ill patients life, I wouldn't say I am 100% assertive in life. Sometimes I feel to poorly to care and just want the day or appointment over with, sometimes I feel too emotional at lack of answers and awareness on doctors behalf that I just accept what they are saying, then go home and get myself in a state over the situation. Each appointment is a learning curve in itself, sometimes not in ways we wish, like progressing in health but growing as chronically ill patients with correctly spoken opinions needing to be expressed.
It also has a lot to do with research and understanding your illness, trusting in your pain you experience, trusting yourself and honesty. EDS patients know more about their health issues and life with EDS than medical professionals, that's one thing we can probably all agree on. We often learn the hard way during diagnosis that doctors cant always piece together multiple symptoms. More often than not with these rare illnesses, medical professionals can pass a lazy diagnosis off as a common problem when it seems they think you are a lost cause. When you are young and tend to have re occurring health problems, doctors may try to dismiss your pain as anxiety, school issues, or possibly being someone who worries. I always knew in my heart that there was more to my health issues and it was so difficult to process for years that nobody was listening to me, I began to doubt myself at times but this wasn't my issue or anyone else's that may be going through this, it was the medical professionals who wasn't truly listening to my problems.
You can learn a lot from a short time in illness but more so for prolonged periods. You will probably feel so fed up with the process at certain times however sometimes you need to separate your emotions from your thoughts in order to be clear in your delivery of words. For example, sometimes we can get too wrapped up in sadness, depression and our emotions can get the better of us leaving us in despair therefore affecting the way we say things. We may say them in anger, frustration or jest. If we are in a bad place with pain, we may have intentions to go in to these appointments all fired up and ready to express our anger but this will not get you anywhere fast. As long as we are able to see the signs in knowing when we are crossing the border on aggressive/passive behaviour, we can only learn and grow as people and as patients.
During my time on the Bath pain management programme, there were times when I would be far too passive in my communication and other times where they felt I was heading towards aggression. They would always point these moments out to me straight away. I didn't really want to hear it at the time but it has helped me have a better understanding of my communication skills straight after I deliver them. For certain, looking back I can now see that the majority of those down moments on the programme were based around my emotions. It was such a difficult time in my life to get through, but looking back I can take forward some tips from sessions and be proud of myself that I even attended, despite it being the hardest two weeks of my life. I often don't really know how I got through it.
I will for certain be reading over my own advice for my upcoming appointments in the new year. Sometimes I need to be reminded in order to prepare for an appointment. I always get quite down around these points, although one thing I've come to accept is that they cant tell me anything I don't know at this moment in time. I know its chronic, I know its painful, I know I cant manage much in life but that's something to get through daily rather than over analyse. Having a heavy schedule of appointments can be frightening and daunting for a young person and sometimes we completely forget all that we want or intended to stress to our doctor in the moment. There have been so many occasions where I leave an appointment and think of all of the things I should have and could have said. I will keep myself calm, composed, dignified, pleasant but eloquent in my delivery of how my illness is affecting my life day to day whilst respecting the person I am speaking too.