This blog discusses suicide and suicidal ideation, and some people might find it disturbing. If you or someone you know is suicidal, please contact your physician, go to your local ER, or call the National Suicide Prevention Lifeline at 800-273-TALK (8255). The program provides free, confidential support 24/7.
I am a caregiver of a child with cystic fibrosis. I spend hours on the phone fighting with insurance companies, scheduling appointments, checking in with the doctors, and calling the pharmacy to see if the medicine has come in yet. I spend even more hours administering meds and begging and pleading with my toddler to please cooperate and do her treatments. I spend nights crying, begging and pleading with God for my girl to be OK, desperately wondering what I had done in life for her to deserve to live with such a cruel and relentless disease -- one that spends its days constantly mocking you and keeping you on your toes. One that will seemingly come out of nowhere when things have been going relatively well for a while and shake it up for you. You see, I am a caregiver, and I often hear, “I don't know how you do it.” Well the truth is, that when you are a caregiver, you have no choice but to do it.
I am a caregiver, but I am also human. That means that I find myself worn down, exhausted, depressed, and dreading the thought of doing yet another treatment because I am dog tired. I feel the fear every time we have a new manifestation of disease. I feel the anxiety every time we head to clinic. I feel it even more every time we are referred to yet another specialist. I have spent much of my time living in the darkness and with the burnout that comes along with being a caregiver.
I live the desperation of wishing that just one person would understand my fears, my sorrow, and my frustration.
We all know that CF is an isolating disease. The mental aspects that I have felt as a caregiver have made me feel even more isolated, because although I know that there are restrictions in our lifestyle and what we can and cannot do, I want to feel like I belong. I desperately wish that there was someone who would share my excitement when small victories are won; someone who would understand the fear and uncertainty when you get the call that your daughter has cultured Pseudomonas and needs to start inhaling TOBI®; and someone who would understand the stress of how fitting that in on top of her other sick-plan procedures, working full time, being a wife, and being a mother to another child who deserves just as much of my attention as my CFer.
I am a caregiver, but I am also human and can only handle so much before I am ready to break. Earlier this year, before COVID-19 and all the lockdowns, I knew something was off and I made an appointment with my doctor. I filled out the depression screening exam, and I scratched out some answers to change my score. Still, I scored an 18 out of 20 on the exam, meaning I was severely depressed.
What was the answer that I changed? It was to the question about whether I ever had suicidal thoughts. I initially said, “Yes,” but out of fear of judgment and the fear that somehow my kids would be taken from me -- even though I had not once hurt them or thought about hurting them -- I changed it to, “No.” The truth is, for the past six to nine months, I had woken up every single day wishing I was dead.
I am a caregiver, a human, and one whose mental health suffers from the burden of this disease, the fear of the unknown, and the thoughts of my own experiences. I suffer from the innate fear of the diagnosis and the ultimately fatal path the disease took for two individuals with CF whom I knew before my daughter was diagnosed.
Last summer, I decided to stop bottling everything up, stop hiding my pain from the world, and finally be honest with myself about what I was feeling and how I was doing.
It was the scariest, yet most freeing experience I have ever endured. CF is a big part of our life, and it is certainly a source of stress; but for most of us, it will not be the only one. Instead, it will be a compounding factor and it will drag us down.
I am a caregiver, a human, and a woman who faced her demons and sought help. I hope that anyone who reads this and is suffering knows that they are not alone -- that there is hope, care, and help out there. It is OK for us to experience these emotions. We are human above all else. If you are experiencing any of the feelings that I was, please reach out for help and understanding; speak up and let your voice be heard and allow your heart and mind to mend.
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