My Family’s Experience During and After Illness

I have been thinking about this as I have been recovering from my most recent severe depression. These are important questions that often get ignored as the focus is always on the “patient.” The reality though is that while I am the identified patient and I was the one who was suffering in a way that no one else was, my husband and daughter struggled with being a part of our family where illness has been so prominent for the past 4 1/2 years.

**What happens to the caregivers of those with a mental illness? How does mental illness affect the immediate family of the one with the illness?**

My husband was constantly on guard and wanted to support me and most importantly our daughter. He was the one who did the physical activities with our daughter such as taking her to birthday parties, synagogue, play dates, etc. He was constantly “on” both physically and emotionally without any rest or break to the point of exhaustion.

Our daughter coped relatively well until last year in first grade. She exhibited extreme anger when she did not get her way at school and could not process disagreements for what they were and would become physical as her immediate response. These behaviors rarely occurred at home. We were constantly in meetings with the school counselor and the learning support specialist to navigate and help our daughter’s difficulties. At the time it was not clear what the precipitant was and while we did think some of it was her responding to my constant illness, it was such a difference from her “normal” behavior, there was concern there was more to it. It was this year that we realized it was due to my being so ill and emotionally and physically detached from her. Her anger was her way of trying to cope.

So where does that leave us now, not only as individuals but as a family unit? We have always referred to ourselves as a “team” and that could not be more true. I think that those who have not experienced a direct experience with a family member with a mental illness, or any illness for that matter, may not understand the gravity of what happens during and after the family member’s fight for health. During, there are constant issues for everyone, individually and as a family. Our family changed into individuals fighting for ourselves and each other, to be well and to hold on to that. My husband was tortured by my being so ill and felt extremely helpless. He watched me fade away in every possible way: his love, his best friend…his partner for life. My daughter desperately wanted to connect to me and there was not much she could do to feel that connection as I simply could not return it in the way I wanted to or she wished for. Our house felt like a pressure cooker, ready to explode at any moment.

It’s been a few months since I began to feel better from my most recent episode and I feel better than I have in years. I think more clearly than I have in my entire life. I am re-connected to my daughter in a physical and emotional way that I missed more than anything. She actually emotionally regressed a bit in August just as I was becoming more emotionally present and it is clear that she was scared. She must have been worried if this would last.

My husband and I are in a process of re-connecting. Although I’ve been the ill one, I now feel like I’m higher up than he is on the scale of feeling well. He has been seeing a therapist for what he describes as his “PTSD.” He is still trying to take in my health and not panic if I have a bad day, even though he fully understands that we all have bad days. He is in a word…terrified. He has watched me become ill, severely ill, four times within the past 4 1/2 years and therefore is completely terrified as there could be another episode, so I understand that he has every right to feel this terror. While I do not wake up each morning wondering when or if I will become ill again and am able to be in my life, he is not there yet. If I am irritable, he asks what’s going on and I have to work on not snapping at him telling him, I am simply irritable…I am not becoming sick again. People feel irritable at times. It happens. I know I must work on my patience and respect his working through. I cannot even imagine what this has been like for him as my “caregiver.”

Not everyone may know or understand this part of recovery and how it is not simply about the patient. I realize my illness did not only affect my husband and daughter but also our family and friends who wanted to help. I chose to focus on my husband and daughter here as this has been our 24 hour a day constant existence. I hope that others can take in how much of recovery involves the family system and is certainly not neat and simple. When I wrote in July, “Welcome Home, You’re All Better?” my focus was on the mere fact that just because I was discharged from the hospital, it by no means inferred that I was all better. This is an ongoing process that may take several more months.

I do hope that others may have a better understanding of how my family is experiencing this process and, yes, we are almost entirely focused on ourselves. Some may say that we are too narrowly focused on ourselves and not necessarily spending more time with other people in our life who are very important to us. All I can say is that this is working for us and we must continue to heal together. Honestly, we have been to hell and back and not only are we entitled to time together, we simply deserve it.

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