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.


Progress as a Process

There is a lot going on right now. My depression has finally begun to lift. I completed my Intensive Outpatient Program this week and it felt like the right time even though I am anxious about leaving such a supportive environment. I also went back to work on a very part-time schedule last week, so that is another change. Luckily, I love where I work and who I work with. I had a great time and it felt good to be productive. Additionally, I am at the point of tapering my TMS (Transcranial Magnetic Stimulation) and will be requesting maintenance treatments from my insurance company. Due to my pattern over the past 3 years, maintenance TMS treatments will be vital to maintaining my health and hopefully stunting the possibility of a reoccurrence of the depression. My pattern over the past few years has been: major depressive episode for several months treated with medication and ECT (Electroconvulsive Therapy) followed by 6-7 months of being well which was then followed by the depressive cycle again. My current episode is the third within three years. My treaters and I want to break this cycle so I can live a healthier life.

While these are very positive things, it is also scary and overwhelming for me. I have been through a lot over the past several months and I am different. I must recognize that I am in a constant state of change, as most of us are, but with individual therapy, group therapy and just life, I have changed dramatically over the past few years. My ability to tolerate things is quite different and I feel overwhelmed by things that never did so before. I am trying to give myself a break and not be hard on myself in relation to when I feel overwhelmed about folding laundry, running an errand, or even sending an email. This is the hard part for me. I must find a way to give myself a break and allow things to fall into place. I also need to live life and while I know I am getting better I cannot have unrealistic expectations of the depression completely disappearing tomorrow. I need to take it easy on myself when it comes to the timing of my recovery. The next several weeks will be difficult but will also include positive moments which will turn to positive hours which will then turn to positive days, etc. I am open to this trajectory and constantly tell myself that this is a good thing.

Life is hard and life can be messy. My anxiety is sky high these days but I am trying to use my skills when I can. I am also trying to talk more to my husband about my feelings as they are happening. This helps with my connection to him and informs him of exactly what is happening in my head. This is not easy for me but I am trying. My life, right now, is a step forward and then a step back but this is a process and I hope as time goes on things will continue to positively progress.


Recovery from Illness