I want to talk about this, but I don’t even really know where to start. So, as always, I will just start.
If you look up the causes of PTSD – post traumatic stress disorder – some of the causes listed are surgery and being diagnosed with a major illness.
Now, when I first learned about PTSD back in college, I remember thinking something along the lines of “Surely being diagnosed with, say, cancer, can’t have the same effect on the body and mind as going to war or being kidnapped, can it?” I remember kind of poo pooing those “lesser” causes of PTSD. It’s strange how we remember things later when they actually pertain to our lives instead of being some thinking exercise.
It’s true. Some people who go through scary medical stuff have PTSD too. In fact, “You can develop post-traumatic stress disorder when you go through, see or learn about an event that causes intense fear, helplessness or horror.”
I can say all of those emotions were brought to the surface in my life when I went through 3 years of surgery, treatment, and tests for cancer.
And if I don’t have PTSD, then what is wrong with me?
I am paranoid about every little lump and bump I get. I took my son to the doctor more times the first 3 years of his life than many children go to the doctor in their lifetime. Luckily his pediatrician realized I had a reason for my paranoia and gave me some space to figure it out. I am constantly waiting for the other shoe to fall. I am constantly waiting for someone to tell me what medical mystery we have to battle next.
As a friend said recently (paraphrasing) “it is always at the back of your mind, lying to you, telling you that the cancer is still there – just waiting for you – just waiting to ruin your life again. That it doesn’t care what the tests say or what the doctors say – the doctors were wrong before and they can be wrong again and again.”
I have migraines. Anyone who knows me knows this. They control a large portion of my life at times. Right now is one of those times. I have had a migraine for over 2 months. Literally unable to function at a normal level. Or even my normal subnormal level. I recently underwent a whole bunch of tests to rule out some scary stuff they were worried could be causing the migraines and other symptoms. Guess what? It all came back normal. Perfectly normal. So now, instead of feeling relief, I feel like I was put through these procedures for nothing. I feel like the doctors are missing something – like they did with my cancer for who knows how long. I am feeling violated and painful and down. Because I received a decent bill of health in one area of my body. How does that make sense?
I distrust the medical community. I do. It isn’t just that my doctors missed the boat on two major problems in my life for a long time. It isn’t. It is partly that they didn’t tell me what my life would be like AFTER all of this was done. I know many people who have had thyroid cancer. The internet is a wonderful thing. It brings people from all over the world together to help each other. I am a member of several online thyroid cancer support groups and I have found the consensus to overwhelmingly be that most people who go through thyroid cancer are not the same as they were before. Not at all. By most I mean that I can count on one hand the number of women who feel like their old selves even years and years out from treatment. Out of over 400 women I know. One hand. Most complain of extreme fatigue and a myriad of other health problems ranging from digestive problems to gall bladder disease. I know, is it causation or correlation, right? These are health issues that many of us have in common and have been told by doctors that they see patients with similar complaints after thyroid cancer.
No one told us it was going to be that way. Most of us were told by our doctors “we will take out your thyroid, you will take a pill every day for the rest of your life, and you will get right back to life.” It simply hasn’t happened that way for a lot of us. As Sheryl Crow said: “no one said it would be easy. But no one said it’d be this hard.” I mean, it’s cancer for goodness’ sake. Did we think it would be a walk in the park? No. But no one told us our lives would change so much either.
So, then, I also feel like not only were my problems missed, but my doctors either don’t honestly know what happens to people after thyroid cancer, or they don’t believe us, or they lie. And I truly have had some wonderful doctors. Truly.
Yesterday I was talking with a mother of twins. Her daughter had problems with her intestine when she was born. They fixed that and of course it caused other problems. Her stomach didn’t grow, her digestive system never got moving. After a couple months told the parents they had two choices. Put her on a feeding tube which would allow her to go home, or leave her at the hospital for several more months to have the staff work on her feeding – getting her digestion/mouth movements/stomach going. They told the parents it would be better for her to be at home with her brother and for them to work with her at home. Also, the risk of infection is higher in a hospital – even in a NICU. So, the parents took her home. It has been more than 3 years. She has not grown normally and she is still on a feeding tube. She doesn’t even have the proper mouth movements to eat. The mother told me that if they had told them how difficult the switching over from feeding tube to eating real food would be, they would have had her stay at the hospital, taken turns going to see her and help with her therapy, and brought her home able to actually eat. IN FACT they were not told that there was even such a thing as feeding therapy – until it had gone on so long she wasn’t growing properly. The same thing happened to me. The doctors thought my son was just picky until a school specialist helped us find out what was going on with him. Only THEN did we find out about feeding therapy.
I am a big proponent of being your own health advocate. I believe in doing research about any health issue I have. But there is a time at which the system is no longer helping in the ways it should. I have spoken about my frustrations with specialized medicine and for profit medicine in this blog already. When does the frustration get in the way of healing? When does the stress cause more health problems? When is it no longer helpful to go from doctor to doctor seeking answers and finding none? Not wanting to give up and not wanting to feel so terribly anymore. These are also things that add to the PTSD, I believe.
One thing I have found is that after fighting with all your might against something – going from one adrenaline driven proceedure/surgery/treatment to another – that when they tell you that you can relax now, that you can take a break, you don’t believe it. Your body can’t just go from fight or flight to rest that quickly. And your body still hurts or is different, so how do you convince it that it can take 5?
Having a major illness changes your life. I know I gained some valuable insight during all of this. I know that not every lesson/change was bad. But I also know that I wouldn’t do it again for all the lessons in the world. If I could change the past 6 years in any way I want, I’d make myself healthy.
I’d give myself the strength and ability to enjoy more of my son’s life and to feel like I can do all I want with him.
Medically induced PTSD? I think it’s real. I think people need to find help when they have it. I think that it’s time we started warning people about it and about their lives changing so drastically so they can try to prepare and seek help ahead of time.