There is more to life than what we perceive. Some days we might feel that the burden we carry is so heavy and we just want to give up but there are also days when things are going so well that we feel everything is possible. Whatever we are feeling is the consequence of how we choose to feel. However, talking to a patient today made me feel that a lot of the time my problems are so tiny compared to whatever I see in the hospital. Today was one of those unfavorable days whereby I was suddenly scheduled to look after the intensive care unit (ICU). I love intensive care medicine but do not appreciate that I was randomly assigned to work there and it was only for a day. In my opinion, it is best to assign people working in the intensive care monthly if not a fortnight at least to ensure there is continuity of care. Oh well, I tried my best today to give the best care I could give and amidst of providing care, I had a chat with a patient who was supposed to be transferred out of the ICU.
The reason I wanted to talk to the patient was to
1) Advice compliance towards her medications as she had defaulted them since last September
2) Highlight that autoimmune disease such as Systemic Lupus Erythematosus (SLE) is a lifelong disease that she needs to live with and our aim is to help her cope with the disease while ensuring good quality of life
3) Address her concerns and to understand why was she not compliant to her medications
I spent about half an hour talking to her which is not very long yet I learn a lot of things from her. She made me realize I am not very good at addressing some of her problems and yet in the end she thank me and told me that she prefers speaking to healthcare providers as they give the best advice. The encounter with her was humbling and I wish I could do more for her or provide her with more information such as introducing her to support groups (Which I am clueless about). I did offer her to be referred to a counsellor but she declined and gave me more information about her health. She shared that she was diagnosed with major depressive disorder but had not required pharmacological intervention and she is no longer on follow-up. I was shocked to learn this piece of information as it was not stated in her medical notes. I was concerned because there was an incident where a patient with depressive disorder attempted suicide in the hospital.
She was sharing how hard it is to live with SLE and all she wanted was to be able to live normally, to be able to play her role as a wife, mother, and daughter. She expressed that she had often asked her husband to divorce her as she felt rather imperfect and pitied her husband for having her as a wife. She also felt like she was not a good mother as her 4-year-old would often ask her questions like "Why can't mommy play with me like other mommies playing with their children?". She told me it was hard whenever the disease flared and affected her ability to do even the simplest household chores. She told me she could see how sad her daughter looked and she felt broken as a mother and she was afraid that her daughter would be psychologically affected by her disability. After talking to me she apologized for being emotional and said that she held everything in her and did not want to talk to her family about it because she did not want to be a burden as she felt she needed to fight the disease and be strong. Indeed I see a very strong woman in front of me, yet I also know this strong woman needs a shoulder to cry on.
I asked her if she had a support group or knew anyone with the same disease so that she could have a support system as I think people who share the same challenges could give each other better support and bond better. I felt a sense of bleakness when she replied that the people with the same disease who used to be her support had succumbed to the disease. I quickly recovered mentally and told her that there are still a lot of patients sharing the same struggles as her and that she could always make new friends as it would be good for her emotional well-being. She seemed receptive to my suggestion but I'm not sure if she will open up to other people.
I find her to have a good insight into her condition but at the same time, I think the lack of support and the character of wanting to handle everything on her own is affecting her mental health which resulted in non-compliance. I highlighted to her that is it okay to ask for help or support from her family especially her husband as he has made it clear that he will stay by her side no matter what happens. Furthermore, although she thinks it is best to suffer alone, I reminded her that her love ones would not want her to suffer alone and perhaps by sharing her burden with them it will make them feel that they could be helpful too and not just watch her suffer alone helplessly.
There were also some of her concerns that I do not know how to address mainly because it could be culturally or religiously sensitive. One of them was about her early menopausal symptoms and loss of libido which she thinks affected her love life with her husband. I appreciate that she was outlining all her concerns and yet I had no proper solutions to her concerns. I offered to refer her to a gynecologist but she said she had seen one and nothing much could be done. I felt helpless that I couldn't help her and I do not think there is a sex therapist in our setting. I could only advise her to do a yearly pap smear for surveillance as one of the problems was bleeding during intercourse. To be truthful, I do not know how to give professional medical advice when it comes to questions like these and I think I have done what I could by suggesting referral to other specialties which I believe could help her better.
Thus, what I learned today is that I need to develop professional skills to address patients' concerns which I plan to discuss with my supervisor so that I can give solutions instead of leaving my patients' problems unsolved. On a personal level, I am thankful to be relatively healthy and I hope we can all appreciate our lives and make good use of it. Although the psychology book said we can't consciously prime ourselves, I think we could at least help ourselves by maintaining a positive outlook because it does make great changes. I strongly believe in positivity as someone dear to me has SLE and due to her contagiously positive nature, she seems to be controlling the disease instead of the disease controlling her.
I find this website to be a good way to learn about lupus.
Found a song that resonates a lot with my heart.
Good night!
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