Chronic illness is tougher than tough. Throw in a rare disorder or two and that is a whole different beast. There are so many things that are hard about this reality, it is a shame that doctors are behind many of them:( Here are a few things that I find inexcusable and from all I read on the Facebook groups I am a member of, it is so very common.
1. Don’t tell me to stay off the internet! When I hear the words, “You need to stay off the internet” from medical professionals, I feel certain that you can see fire shooting out of my eyes. Thems fighten words! Doctors need to realize this fact: This is not the 1950’s, where the doctor knows everything and the patient/caregiver knows nothing. We no longer have to follow the words of the doctor blindly, with no opinion or insight of our own.
This is a very different world, thanks to the world wide web. I have access to thousands upon thousands of articles and research studies. Heck, I can even get access to the same journal articles that the doctors read! I also have access to online support groups, where I can talk with tons of real people with said medical problem and learn the reality that they live with; facts that seem to seldom make it into medical journals.
Times have changed and doctors would be wise to listen to a wife, mother, caregiver or patient who has spent countless hours of their nights researching, when they should be sleeping. They would be wise to come to terms with the fact that this person could know things they don’t because of that research, and they would be wise to see the value in that.
In truth, I don’t know if we would ever know what was wrong with my medically complicated daughter and husband if I hadn’t done the research to point the medical teams in the right direction. I have lost count of the medical professionals who have blown off my concerns and ideas. I have had eyes rolled at me. It has been insinuated that I was the cause of the illness because I was being “uptight.” Heck, yeah I am uptight, when I see that my husband can’t breathe and when my daughter is up tossing her cookies more than half of the week! But you know what? I was right. Both times. I pinpointed exactly what was wrong with my daughter. And on our own, out of our pockets, we paid to have every inflammatory test run on Hubby, and found the direction to turn to find out what his illness was.
There is power in the efforts of a wife or mother who sees suffering and decline in their loved one. There is NO ONE on planet Earth more motivated to help the sick person, no one willing to put in the hours of research or who knows the patient’s condition better. So, Doctors of America, I will not stay off the internet! I will do what it takes and learn continuously, so that I can be my loved one’s advocate and make sure they get the best care possible.
2. Do not tell me my loved one is “fine” when I tell you they aren’t! No one knows my l oved one better than I do. I watch symptoms, watch for medicine side effects and make mental notes on changes in their behavior. I study them, learn them. When there are changes, I do the detective work to try to determine what triggered it. I keep track of how they are sleeping, eating, breathing and pooping. These are all puzzle pieces that make a whole picture. So, Doctors of America, if I tell you that my loved one is not fine, THEY AREN’T! I know what “fine” is. I was there for the good years, the good days, the good moments, and this ain’t it.
3. Stop making the person I love feel like they are making their symptoms up! Chronic illness, rare disorder or disease, medically complicated. Whatever words you chose, it is a hard pill to swallow. There is so much grief and denial and anger and adjustment. With chronic illness, you walk into a very different world, where everything is unpleasant and unfamiliar. This new world doesn’t feel like the one you used to be in. It hurts. It is exhausting. Things that were done with ease in the old world now take every bit of strength in the new world. And to be totally honest, the people here aren’t usually very kind.
It is hard enough, and my loved one doesn’t need their doctor telling them or even insinuating that their symptoms are all in their head. ‘Probably just allergies.” “Or stress.” “Or a phase.” “Or maybe they need to exercise.” “Might be from not drinking enough water.” Doctors of America, just stop! Stop and really listen to your patient! When you tell them that their symptoms are all in their head, it makes things so much harder and causes constant battles in their minds. It is hard enough to tell doctors all that is going on. It is a risk because you never know if it will be met with dismissal or platitude. And then the patient starts to feel bad about themselves (worse than the limitations of the disease have already made them feel). They torment themselves. “Maybe I am just lazy.” “I am a failure as a father because I can’t do such and such with my kid.” Doctors, you are adding bricks to a wagon that is already to hard to pull. Listen to my loved one and think about what could be causing the complaints in their medically complicated bodies. You will do so much for their health by making them feel heard and validated.
If I were the President of the World, I would make it a requirement that before a doctor can practice, they need to have had the disease or disorder they intend to specialize in, or someone very close to them needs to have it. You can learn a lot from walking in someone’s shoes, things you wouldn’t know unless you have trodden their path. God has dealt chronic illness sufferers a heavy hand. My dream is that one day, medical professionals, family members, advocates and the patients themselves can work as a team, putting pride aside, with the number #1 goal being the best possible AND COMPASSIONATE care for our loved ones. Well, I can dream, can’t I? Lol.