By Saadiya (she/her)
@theinvisiblecrisispod + @saadiyayu
A major part of living with a chronic illness is learning how to advocate for your health. This can be a daunting and exhausting experience, especially when dealing with healthcare professionals with years of medical knowledge behind them. However, there are still many instances of doctors not taking patients’ pain seriously, dismissing illness that present no obvious cause, or telling patients to simply ‘calm down’. While not only emotionally draining, this constant dismissal can lead to delayed diagnosis which can cause unnecessary pain and complications in the long run.
As someone who was born with Sickle Cell Anemia, a genetic blood disorder that causes bouts of chronic pain and fatigue, I understand this all too well. I have experienced first hand paramedics reluctance to take me to hospital during a sickle cell crisis or nurses trying to turn me away from A+E only for them to soon realise that I needed an urgent blood transfusion. These experiences, plus others, has helped me to identify some strategies that I have implemented over the years that help when speaking with healthcare professionals.
Understand your body
Going to your doctor can be an intimidating experience, particularly as they are the ones with the numerous degrees and experience in medicine! While they are experts in their field, however, you are the expert when it comes to your own body and this is where you can help them fill in the gaps. Being in tune with your body and how it reacts to different triggers such as stress, certain foods, environments, even products, is really important for us all. This can help you identify what is “normal” for you and what needs further monitoring.
Document your health
Writing down dates and times of certain symptoms, no matter how small, can help you keep a track of any changes that may be happening to you. It can also help you present a case to your doctor and give them a way to easily identify any patterns or triggers. A health diary can be related to food, pain, or even changes to your skin or weight. Not only is it beneficial for the doctor and answers many of the basic questions they will ask, but it can also help give you the confidence needed to ask for tests, a diagnosis, or a second opinion if needed. Even if you already have a diagnosis, illness can change as you go through puberty, a stressful period, or just as you age.
Rule out basics
Of course, not all change is necessarily bad or an indication of illness. Sometimes it may be that your body is just changing and adapting to a new routine, sleep schedule, stressful period, or food you have introduced or eliminated from your diet. A benefit of documenting any new symptoms is that it can also help you identify if your body has changed as a direct result of any lifestyle changes you have recently introduced. By doing the work to eliminate the basic things like stress or diet, this places you in a stronger position when going to see your doctor or nurse.
Finding the right words
The language we use to describe pain changes depending on various factors such as cultural background, race, religion, and even gender. For example, women are more likely to feel pain more intensely than men which will impact the words that they will use to describe their pain to doctors, whereas mens descriptors of pain are often shorter and less detailed. As pain is such a subjective experience, it is hard to know how to describe it, however it’s important to be as objective as possible, and identify the area, type of pain, and how intense it is. Other information that is important can be:
How long you have had the pain
If it has spread
If it is a consistent pain or triggered by movement
How the pain limits your activities (e.g if the pain is in your hand, can you still type or hold a pen?)
Have people in your corner
Sometimes you may be physically unable to advocate for yourself which is where your family and friends come in. By sharing your experiences and opening up to those you trust about how your health not only helps you but also gives your family or friends the right information and confidence to speak with doctors with you if needed. Dealing with chronic illness can be an emotional experience that often leaves you feeling exhausted or defeated.
Trusting that your friend or sibling can fight on your behalf can take off some of the pressure and leave you to concentrate your energies on rest.
While there will always be systems in place that can make accessing healthcare difficult depending on factors such as race, gender, or socio-economic background, being as prepared as possible can give you and your family the confidence needed to demand the healthcare that you deserve.
(Originally published 20/2/21)