From the time I was five, I have lived with a body that subjects me to pain. Severe headaches at age five, joint pain that kept me on the sofa at age nine. Then an adolescence of debilitating fatigue, sensitivity to sound and temperatures, allover muscle and joint aches, flu-like symptoms. It would last for weeks, months at a time, then just as quickly leave. My physician father took me from specialist to specialist who ran blood tests. They kept telling me the same thing: there’s nothing with you. It must be all in your head. They ruled out a variety of illnesses and that was that. Bless my father for never giving up, even though the answer would not be found until after he had passed away when I was 18. Even the Mayo Clinic was clueless. Especially when I passed my psychological tests and they ruled out depression.
What was wrong with me? To the world, I looked fine. But I didn’t feel fine. I got anxiety every time I visited a doctor, knowing how I would be judged. I had told my story over and over and no one believed me. Even my family had doubts. They thought I was making it up, being lazy. I started to doubt myself. Was it all in my head? What did that even mean? It wasn’t until I was 22, after having been bedridden for six months with fatigue so severe that it took all my energy just to take a shower then I’d have to go back to bed, that I met a doctor who had the courage to defy her colleagues and believe me. She was on the forefront of what they were just starting to understand: fibromyalgia. Her faith in me changed my life. (And I am grateful to say, aside from chronic neck pain and migraines, all my other symptoms receded completely.) But I know what it’s like when there’s something wrong with you and no one believes you. I know what it feels like to have people judge and question your integrity and sanity. And when you don’t get better within the timeframe they believe is reasonable, they dismiss you and often give up on you.
You know how this feels, don’t you. I know you do.
PTSD, spirit wounds, depression, and illnesses that run ahead of medicine’s understanding… people just don’t get it. They think that you’re making it up, that you’re lazy, that you’re just not sociable, that you should be able to overcome and get on with a life that feels right to them. They don’t see you. They see your symptoms and behaviors. And that’s it. When it’s trauma related, as PTSD and most spirit wounds are, they don’t understand how you just can’t let go of it and move on. Just like that. They knew you when you were strong and the idea that you can’t overcome this is difficult for them to believe. If you’ve tried for years to get better and haven’t progressed, they often tend to see weakness (instead of the incredible tenacity and strength it takes to deal with and manage that level of pain for that long).
It hurts to not be understood. It’s lonely. It ruins relationships. It splits families. It leaves you feeling ashamed that you’re not stronger and doubting yourself. The sad part is that if your wounds or illness were visible, if you had cancer or had lost a limb, people would be more accepting and empathetic. (Just to a point, though, people seem to be very quick to dismiss others if they do not recover fast enough. I know those who have visible wounds and illnesses also get “left behind” when the suffering continues.)
Why is it so hard for people to understand?
First of all, let’s be clear. I’m not talking about wanting pity or sympathy. You are tough, you’ve been through hell, you have higher thresholds for suffering and pain than most people will ever comprehend, as well as tenacity and endurance. You don’t need someone to feel sorry for you. Quite the contrary. You need someone to see beneath the pain and remind you of your strength and courage and ability to persevere.
But what happens when you have invisible wounds, is you come home and your loved ones start to see how those wounds manifest in your mood, your decisions, your ability to be close to them, what your attitude is… and what they see is someone they don’t recognize. That scares them. They keep believing that these wounds will just go away, or worse, they don’t believe that your pain is or should be as bad as you make it out to be. If you lose your job, you become a loser. If you don’t attend parties and social events, you become antisocial. If you shutdown Facebook because you can’t stand “the noise”, you become unfriendly and out of touch. And on it goes.
People hope that you will return to who you used to be. As time goes by and anger and symptoms become increasingly difficult for them to live with (cause it is damn hard to live with anger and rejection), their hope starts to fade. You do need to understand that your behavior feels personal to them — especially if they don’t know what you have been through*. You are angry because of what you’ve been experienced, but to them, if feels like you are just constantly angry at them. Anger hurts and it pushes people away. And over time, if people do not have a context to understand why you are angry, they assume they are the problem and they withdraw.
(I don’t want any family member who reads this to think that I don’t understand how painful and stressful it is for you to care for someone with PTSD and spirit wounds. It is. It takes a deep toll on you. The depth of these wounds is so deep that it hurts you, too. These are some of the most intense wounds that human beings can experience. We don’t often acknowledge that, but we need to, otherwise, we risk thinking people who have PTSD/spirit wounds are lazy, incompetent, weak, or uncaring. They’re not.)
What often happens is that people assume these wounds are temporary. That healing is fast. That there is some quick fix. When the reality is that these kind of wounds fundamentally change who you are. And that change (not the symptoms or the pain) is permanent. Unless that fact is accepted, there is no room for healing, growth, transformation, becoming someone stronger, wiser, and more whole. (All of which are possible when pain and wounds are validated and accepted and become the place to start rebuilding a sense of self and purpose.)
If you are a family member or loved one of a someone suffering from PTSD and spirit wounds, you need to realize that these wounds are deep and life-changing. There is no going back. You can only begin where you are and go forward. These wounds are not something that anyone would choose to have. They are sustained because your loved one was acting with extreme courage, willing to risk his or her life for someone else, and/or surviving.
I truly believe that if we make an effort to understand, to stop judging and try to imagine what it would be like to experience what each other has been through, more relationships can be healed. And the wounded can get that life-affirming belief in them that allows them to stop trying to justify why they are wounded and to focus on finding a healing path.
*If you don’t know what your loved one has been through and they can’t or won’t tell you, do some research on what people in similar circumstances have experienced. There are many stories out there that will help you to get an “inside” view and perspective. Know that everyone experiences trauma differently, but taking the time to imagine what it would be like will be helpful to changing how you perceive your loved one.