One of my biggest pet peeves is when people make assumptions about me, whether it be my actions, thoughts, feelings or beliefs. In the context of being chronically ill, people making presumptions about you and your health can be extremely exhausting. It could be a doctor presuming that you're exaggerating your pain, a parent presuming you're being lazy or a friend presuming you're unable to do anything. Whoever or whatever the context may be, it is vital to know how to speak up and let your voice be heard.
One prime example I can think of during my journey was when I was unable to hold up my neck for more than 5 minutes. I tried getting in touch with the rheumatology team, and I was immediately dismissed by a nurse saying it was just muscle cramps. What's worse is he said it like I was foolish or silly for thinking the pain was related to my JIA, and that I was overreacting. Unhappy with this outcome, I went straight to my general practitioner and raised my concerns about how much the pain was affecting my day-to-day life. Despite not being a rheumatologist, he could tell it was more than "muscle cramps'' and prescribed some strong painkillers to relieve the pain.
You see it was because I decided to speak up that I managed to make my pain 100 times less worse until my new immunosuppressive medication worked. The vitality of not letting people shut you down but raising your voice is just as high as taking your medication. Be it campaigning for greater awareness around your condition or just because you are worried about a new symptom, do not let yourself be suppressed.
You are the person living your life, so you have the biggest say in what you feel. You are the one who decides how you wish to be treated. I will now give my three tips for letting your voice be heard, based on my personal experiences.
1) Letting your voice be heard does not mean shouting.
It's easy to march into a doctor's office and demand answers or treatment. Doctors, nurses, clinicians and specialists are all there to help you. Although they may make a short-sighted judgment, they want to help you. Therefore, when speaking to them, you must treat them with dignity and respect, politely raising your concerns. If you're still ignored, you can speak with a stern tone, but this does not mean you have to be rude to the people in charge of your care.
2) Do not be afraid.
This is as simple as it sounds. Feel free to speak up if you have a query. Once again, you know best about what you are feeling, so nobody can tell you otherwise. If you're not happy with what a healthcare provider has told you, then find someone else to raise your concerns to. You should not feel worried, anxious, or guilty for wanting answers/treatment and wanting to live a normal life.
3) You're brave for speaking up, but not weak for staying quiet.
This is similar to the above tip, but whatever you do, just living with your chronic illness makes you so brave and so strong. You should be for who you are and if you choose to use your voice, then you are courageous. If you choose to focus on yourself and don't want to speak up then that makes you no less weak. So long as you put yourself first before others, then do what is best for you.
Your voice matters. You deserve to be heard. And you should always prioritize your health. While my experience will differ from everyone else's, this should provide insight into the importance of speaking up and advice to help you do so.
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