It happened again, or should I say it’s still happening. Last night, I was talking with a close family member about my seriously ill sibling. I can hardly imagine the mental turmoil and pain my sibling is experiencing, and I feel terribly for their suffering. We spoke about the latest test results, how fatiguing the treatments are, and how strong they are to continue working during this illness. I admire my sibling and hope they can recover quickly and thoroughly, to resume a healthy life.
What happened during this conversation that has been lingering in the back of my mind since last night? It is the starkly different approach to the invisible illnesses myself and my children have been fighting for years now. I try not to bring up our health struggles, but in a moment of weakness and a longing to talk to another adult about a recent health concern with my youngest child, I did.
I was met with negative comments about my need to continually take my children to doctors, how the test results don’t mean anything, and I should just tell my children to tough it out. My children all have post-traumatic stress disorder (PTSD) as a result of repeated childhood trauma and exposure to domestic violence. They struggle with depression, anxiety, and low self-esteem. Asthma, chronic pain, and chronic migraine add to the already devastating diagnoses.
They see a therapist weekly, have annual checkups with the doctor, and get their flu shots. Also, there are urgent care visits for severe colds that aggravate asthma, in-office procedures to combat chronic pain, and those that attempt to prevent more migraines, as well as hospitalizations for depressive episodes and suicidal ideation. Do they see the doctor more often than the average kid? Yes, they do – because they need medical care for conditions that are not visible to most people.
At the end of the conversation last night, I had a familiar, unsettling feeling. When I was a child, I had several health struggles. Some of them presented with obvious physical symptoms and were, in time, treated. What I remember most about my health struggles as a child was being told that what I felt was imaginary, not real and that I was causing it to happen.
Traveling in a car with me as a child was awful because of my severe motion sickness. This was no secret, but I was always told that I was making myself sick. For the life of me, I can’t imagine why I’d do that. Vomiting in a car is no way to make friends, positively influence people, or have any fun. Eventually, that motion sickness turned into episodic migraines, but I was still bombarded with messages that I must be doing something to make myself sick.
As an adult, and in part because of an abusive, decade long marriage, the migraines became chronic. After a vicious divorce and financially devastating child custody battle, the migraines only got worse. Eventually, I was put on extended medical leave, but not after making significant and repeated mistakes at work because of my stubbornness to work regardless of my medical condition. After all, I should be able to push through and stop making myself sick, right? I eventually lost my job and have been fighting to regain my health and financial security for years now.
I don’t talk about my personal struggles with family anymore because I don’t think anyone wants to hear about it, and I certainly don’t need the negativity. I have a chronic neurological condition. It is real and invisible. It has nasty leaches called depression and anxiety that drain me of any migraine-free days I might have. I do not wish this on anyone, yet I have a child with chronic migraine. I feel guilty and responsible for my illnesses and those of my children, even though I know I did not cause them.
Yes, I take my children and myself to the doctor to receive timely, appropriate medical care. We also get up every day and push our way through and jump over (or crawl under) the hurdles life throws at us. None of us have a potentially terminal diagnosis, like my sibling, but our lives are severely impacted by our invisible illnesses. We didn’t cause them, and we don’t make them happen. In fact, we are doing everything we can to get better, whether anyone believes it or not.
The invalidation that happened to me as a child is still happening to me as an adult. The stigma of invisible illness is alive and well in my family, but it ends here. I will be the last of my family to be invalidated by loved ones about how I feel. My children will not be blamed for their illnesses, and they will be given the help they need to recover, so it doesn’t happen again.