Fighting for Validation When Doctors Don't Take Your Chronic Illness Seriously
When you are first diagnosed with something like anxiety and depression or fibromyalgia and neuropathy, or the first time those conditions are thrown around at a doctor’s appointment, it can feel like a huge relief. You finally have an explanation; you finally have someone listening to you and taking your pain seriously, it’s huge. Many of us spend months, years even fighting to be taken seriously, begging for our doctors to hear us, to stop what they are doing and pay attention to us.
The first time I truly felt heard by one of my doctors I actually said to him “wait you’re actually listening to me?” Mind you I did not intend for it to be out loud. I went in there ready to fight for myself because after years of the same brush off experiences I did not expect to be heard. It was a welcome surprise. The diagnosis is both a relief and a weight on your shoulders; you can now name it, you have that validation, you are not crazy and it is not all in your head, there are things you can do and try, and take. But you also now know that it is never going away. You will never be cured. This is your life now and that magic fix you have been hoping and praying for is not coming.
What I don’t think doctors understand, or at least none of the ones I have been to over the years, is that no one wants this. It changes your entire life. I look at my life sometimes in a before and after perspective. My life before all of my symptoms started taking over and now. Some days I still mourn that person, I miss that young and naïve girl. Chronic illness, chronic pain and mental illness completely strip you of the person you used to be. You lose yourself, and throughout that period of time you are trying to learn how to survive day to day without knowing what is causing your symptoms, trying to understand what is happening to your body, trying to feel like a human being again and if that isn’t enough you find yourself literally begging for someone, anyone, any medical professional out there to look at you and say “I’ve got you, you are right, this is not normal and we are going to find out what the problem is and what we can do to make things easier for you.” This is not a life anyone would choose for themselves if they were given an option.
Over the years you slowly put yourself back together with the little bits and pieces you get from your doctors and pure determination. You learn to live a new life, despite the fact that you have no idea what you are doing and are completely overwhelmed. You learn the things you can no longer do; you learn what your limits are and not to push them. You learn what causes your flares and what works to give you some relief. You will grieve the person who you were and learn to celebrate the person that you are. If you’re lucky you find a community of people just like you to support you and share ideas and techniques that help when you’re having a flare day or your anxiety is really high and you feel like you are drowning. You become a stronger person, you become an advocate for yourself because the whole time you are doing all of these things you are still fighting to be heard by the doctors who have taken an oath to help you.
If like me you happen to have a mental illness as well, then you can almost guarantee you will be immediately pushed aside, because it is all in your head and you are being over dramatic. I recently read and watched a story in the news about a man in Toronto who went to the hospital because he was in so much pain he could not walk and they turned him away because he has a mental illness. The video of that man literally crawling out of the hospital on his stomach using his arms to move him because no one would help him is forever burned into my memory. It is horrific and unacceptable. This man was later diagnosed with something called Guillain-Barré syndrome at a different hospital.
I often wonder if doctors realize the extra and unnecessary pain they cause their patients by simply brushing off their concerns. I recognize and fully understand that depression can cause physical symptoms like pain. But the same is true for chronic illness. Waking up in pain every day causes depression. Losing yourself, losing your ability to do activities you love, having your doctor turn you away causes depression. Living undiagnosed without access to resources, aids, proper medications and treatment options causes depression. No. One. Wants. This.
Ten years ago, I could never imagine that this was where I would be in my life. I started out lost in an ocean, barely treading water. Some days I still feel that way; it’s a mountain that I will have to climb for the rest of my life. I may have lost who I was, but I became who I am now. I found the parts of myself from the “old” me I thought were lost and put them together with the “new” me. I am stronger, wiser and happier. I had to fight because I have a mental illness, I had to fight because I am a woman, I had to fight because many doctors looked at those facts and decided that I just wanted attention. But I still fought and I will continue to fight, for me and for others.
Someday I hope things will be different, that people will be able to go to their doctors and be taken seriously from the start. Until then the only thing I have in terms of advice for people just starting out on their journey is to never stop fighting for yourself, find yourself a community of people with similar experiences and talk to them because you will learn so much from just doing that alone. It may be cliché but as they say, diamonds are formed under pressure. All the years of struggling and fighting to get here were hard but they shaped me, they made me who I am now. And believe it or not I wouldn’t change that.
Photo by Sarah Cervantes on Unsplash