Something you’ll have to continue to do throughout your disease journey or chronic illness is advocate for yourself. What is advocating? Advocate is defined as “[a] person who is appointed to advise on and protect the rights, needs, etc., of a vulnerable adult or child, and act as his or her representative” (“advocate”). When you are ill being an advocate for yourself will become a full-time job. It is critical to take breaks, and remember you matter, the journey may be hard but you do not go it alone. All of us living with complex illnesses are doing the same.
It is essential to advocate for yourself because you must keep your best interest at heart the entire time. Advocating for yourself never stops; this is something that I have wanted a break from numerous times, but the reality of my illness means I cannot stop. I must continue to advocate for myself, or I become the one that suffers. If I do not advocate for myself, doctors, nurses, paramedics, anyone in healthcare could end up harming me if I remain silent. I need to tell the healthcare providers what I need. Just as you need to tell your healthcare providers what you need, this means being open and honest about what is going on with your conditions. Telling doctors, nurses, paramedics, or anyone else involved in your care what you know works for you or doesn’t. Many times, we take what someone in healthcare says as law, and there’s nothing else to do about it. If you know a treatment option will not work for you it is vital to speak up and tell doctors, it is after all your body that is affected by treatments. There are a lot of things within your power to help you get the care that you need.
Examples of getting the care that you need. Something I need is Hydration Therapy this is called Hypodermoclysis. Hydration Therapy keeps my body hydrated because the diseases that I have chronically dehydrate me; this creates a sense of feeling like I am hungover all of the time. Not being properly hydrated can lead to dire consequences. My rare diseases make me feel hungover because my body is not retaining any nutrients; my body dumps all nutrients and hydration out of my body. Getting hydration was something that I needed to do as I advocated for myself to be able to get Hydration Therapy.
If I would’ve just said nothing to doctors, my blackouts would’ve progressively gotten worse, and I would’ve potentially ended up having life-threatening episodes because of dehydration. Dehydration is very dangerous, and it is something if gone untreated can cause dire side effects. I am not a doctor; I am a patient, and as someone that lives with chronic dehydration, I know when my body is becoming more dehydrated because of the symptoms that I encounter. By talking to my doctor and telling him that I need more hydration more often and working with him and other healthcare professionals, I have been able to get onto an HDC. HDC is a transdermal (meaning in the skin) hydration, it does not travel through the vehicle of a vein, this type of treatment is benefiting me for now and I hope it benefits me in the future. I am hoping I do not need to get a PORT as that would be the next step if HDC does not work.
Hydration Therapy can increase my quality of life, and that is why I am using it, to make me better, not make me worse. If any treatment is making your body worse you need to tell your doctors, they can change the treatment plan and potentially do something to help you. I have noticed with myself and other people the unknowing feeling of whether they should say something to a doctor about something not working for them. If you don’t say something to a doctor and something they are doing to treat you is causing harm, that’s not good for either party. It is essential to speak up for yourself and know what is working and what isn’t working for your body; this way, you can get the best treatments for your disease that you need.
Everything that you do starts with advocating for yourself. It comes down to figuring out what you can do to help yourself in the long run because you know your illness best, you know your body best. Even though your doctors may have other people with similar diseases, everybody’s body is diverse. Suppose your body is not responding to typical treatments like somebody else; you need to be looking into other avenues. I know it can be a very exhausting process. It is not easy, and it does take time. When you live with chronic illness, you become a professional patient in a way—taking the time to learn about your condition and focusing on what you need from your doctors to help you have the best quality of life possible. It’s essential to tell your doctor all of your symptoms, educate your doctor to inform them about your symptoms.
Keep moving forward, keep advocating for yourself to get the best quality of life. You can do this. You can survive through the hardship you are facing; it all starts with you. Thank you for taking the time out of your busy day to read my blog. I will be here next week on Thursday for another blog post. See you soon survivors.
“advocate, n.” OED Online, Oxford University Press, March 2021, http://www.oed.com/view/Entry/3022. Accessed 9 March 2021.