I Have to Hold Back So Much Because of My Illness
What a rough three weeks my family has been having. I’ve had to put a hold on writing my column because of events outside of my control.
Once again, I am angry with this rare illness of mine. It not only puts a hold on my life, but it also puts a hold on the lives of my husband and daughter.
Because of my immunocompromised status, I am an easy target for contracting COVID-19. I am also more likely to be hospitalized and suffer severe illness from it, which makes it hard for those around me to live some resemblance of a normal life during the pandemic.
Tested
A close family member was diagnosed with cancer several years ago. Since then, the cancer has ravished her whole body. It has been tough watching her suffer through this.
While in the hospital, she tested positive for COVID-19. As a family, we wanted her to come home; however, the doctors notified us that until she tested negative, she would continue her stay at the hospital. Finally, the decision was made that she could be released to her home so that she could spend the last days of her life with her loved ones.
These past three weeks have put us through a test. We have been dealing daily with doctors, preparations, out-of-town relatives, and a roller coaster of emotions.
Because of my illness, my doctor advises that I not visit her at her home, for fear that I could contract COVID-19. This has put me in a predicament because she is family. I need to see her, to let her know that I am there, that we are all there.
My husband and daughter had to make the difficult decision to refrain from visiting her as well, due to my being immunocompromised. Our decisions are being plagued by my illness.
How am I supposed to be OK with this? Why do they have to stop their lives just because I have to put a hold on mine?
Anger
I don’t even know who or what to feel anger at anymore: myself, my illness, or this pandemic.
I am constantly apologizing for making everyone adjust their lives just because of my frailty. No one is asking for apologies; everyone has been supportive. It is just me, my emotional demon. I don’t want to miss out on saying my last goodbye or having the last touch or hearing her last words.
I am angry with this illness of mine.
It doesn’t matter if or when the pandemic ceases to reign over our lives. My illness will still be there, stalling my freedom from being a part of this collective society.
I am not sure if my anger is due to the emotional stress of losing yet another family member or if it has always been there, buried so deep in my mind.
I want to live as she would have lived had she been given the chance. I want to embrace my illness as she has embraced hers. I want to open the door to the daylight of my existence. I try to allow my illness to be a part of me, but at the same time, I face denial.
Every time I allow my strength to occupy this space of doubt, some event happens to question it and my courage. I have to hold back so much because of my illness, and it constantly reminds me of that.
A degree of comfort
I eventually decided to visit her from outside her home. I felt like a stranger looking in from the outside. Looking through the glass door of her home, I waved and whispered, “I love you.” She smiled and weakly waved her hand at me as she repeated the same words.
I felt a wave of so many emotions: anger, sadness, guilt, and eventually comfort.
Her smile said it all. She was the one giving me comfort, instead of my giving it to her. It felt as if she wanted me to know that all would be good. She was right where she wanted to be — with her family, her children.
She owns her illness because she understands it. She has lived with it and accepted it. She has become my inspiration, to own my illness, to live with it, to accept and respect it.
It has been a tough three weeks. My illness is still with me. It will never leave me. I respect that. The anger lingers a little, but I am a work in progress.
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
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Comments
Tonya Worley
Well, I find myself in a dilemma as to respond because I am afraid my responses might sound like I am a bitter victim of this disease or better yet all kinds of diseases just the PF is the one that has and will rob me of life. I never would have thought of being told I am terminal and all that comes along with realizing and accepting it, that life goes on. OK.. Hold up a minute just because I don't look or act sick, and I still can keep pace with almost every age group in my family I have had to stop midlife and think that my days are truly numbered and, something exists in me that will be my probable demise. It's like I am the only person that sees this as remarkable and not in the good term of remarkable it's like it was said and now get on with it. Good Grief And as I said, Hold up a damn minute and expect me to be a little thrown by this. Some family and/or friends were told and have forgotten it and so, they expect me to fix them up or help them out. So just for the record, your blog/post reminded me there are worse off than me and that yes it is possible to own it and accept ad resect it. Thank You... a friend in suffering Tonya W.
Ann Reynoso
Hi Tonya, good to hear from you. It is hard not to become bitter. I am always fighting the anger I feel towards the disease. I am still a work in progress. Accepting this illness is the first step in trying to move forward with our lives, and it does help if we have support from our loved ones. I pray you stay strong and continue onward. As a fellow PF fighter, we can fight together along with our PF community.
Mary Geissler
I want you to know that we all understand out here what you're going through. So very sorry for your loved one's life and the barriers this disease puts on all of us. You sound very strong to me - reading between the lines - you will be doing everything that you can and sometimes, that's to just wait, pray and hope.
Ann Reynoso
Thank you Mary. I am so pleased that you read my column. I am grateful for your kind words.
George Beck
I find these well thought out contributions so helpful to understand that I am not alone in the world with PF and to know that my emotions are shared by others.
Ann Reynoso
Thank you George for reading my column. I am glad that you no longer have to feel alone in the world of PF. I believe this is why writing my column is so important to me. It not only helps reach out to others, but I know that the PF community will always be there when we need them.
Virginia
What you shared is what each one with PF is feeling. I am angry that I have this chronic illness. Though, I am still working, I felt I wasn't good enough for my patients nor co staff. I need to work because I am not ready for retirement and I am working so I can avail of the expensive Ofev med. Great it was partially covered by my insurance company. I beg to be kept in the job. It hurts when I am not as vibrant as I used to be. My body tries to do things as I used to but the shortness of breath and wheezing prevents me. People around me pity me. I have to dress and put-on some makeup so I won't look sick. I am miserable. At times, I want to die.
Ann Reynoso
Hi Virginia. It is true that this illness can be extremely challenging and at times exasperating. I hope that you will allow yourself to have that strength and courage. Take time out and allow yourself to heal from the day. Tomorrow will always be there. Stay strong.