Caregiver's Love

Last updated: February 2023

It takes a special person to be a caregiver. There are different types of caregivers; some are partners, some are family, and others are friends. They all have a special place in my heart. They all have helped me more than they probably even know.

My main caregiver, my partner, my wife

With Valentine's Day coming soon, I want to talk about my love, my main caregiver, and partner in my life.

I have had many different caregivers in my fight with my rare disease, sarcoidosis. My wife, Diana, has been my everything. She has been my rock and has done so much for me in my tough journey. I wouldn't be where I am without her. She is the breadwinner, the level-headed one, the mother to our daughter, and of course, she takes care of me whenever I need her.

Diana has been through so much with me. She has seen me at the worst of times and the best of times with this disease. She sat at the hospital through my many hospital visits, surgeries, and really rough times in which we didn't know if I would make it. I really must give her so much credit for being there for me. I always say she married me, knowing I had this rare disease. Not many people would do that.

Getting caught up in my own care

Living with a rare disease patient is not easy. We have so much going on and get so involved in our own care that we sometimes forget what is going on with our partners' lives and how our decisions will affect them. Unfortunately, we patients sometimes get tunnel vision and don't see how it hurts them.

Some of the things I do are not on purpose; I think it is best for me but I don't ask my partner her opinion and how it will affect her. I am truly sorry for that. As an advocate, I know I have been gung-ho being an advocate, and my wife has supported me in most of my advocating. She also tells me when I need to step back and practice self-care and when I make a decision that might hurt others and myself.

My wife is always there for me

I know I am not the easiest to live with and deal with. I am stubborn, do things I feel are right, and make mistakes too. I also push myself so hard at times that I get sick. But the biggest thing about my wife is that she is there when I crash.

Being a partner and caregiver takes its toll on her as well. She deals with the stress of my health, the stress of taking care of her patient partner, the stress of the household, and most of all, she is there to take care of me, the patient, during good and bad.

Caregivers are unsung heroes in healthcare

I have always said that caregivers are a misrepresented group in health care. They are "expected" to do all of these things for the ones they care for, but they weren't taught how or how to prepare for something like caring for someone with a rare disease.

The patient doesn't even know how to prepare for something like this. How do you expect the caregiver to know or understand how we feel? Most of the time, we don't know how we will feel from day to day. I dislike when people tell caregivers or others in a patient's life how to act or what to do. Each person is different, and each patient is different, so who are we to tell others how to act and react?

Caregiving relationships are not one-sided

I always try to say that I will tell you how I feel, and we can discuss how you feel and work together to ensure we are there for each other. As patients, we need to be there for our partners and caregivers, too. It can't be one-sided. No relationship should be one-sided. I am still trying to learn that.

Caregivers need caregivers too. People need to listen and help one another. I know it is hard being a patient and worrying about your health, but human nature shows that we all need to be heard. We all need help and need to talk to one another. It is just the way we are. My wife is a godsend to me and I am sure I don't tell her enough. I know "I love you" isn't said enough, and what is meant by saying that as well.

Show love to the caregivers in your life

Caregivers are so important in the life of a rare disease patient – and any patient, for that matter. Don't forget to try your best to find a way you can be there for them too. I know every day is different, and everyone is different, but please don't forget that even though we are suffering physically and mentally, they may also be suffering.

Love them as much as they are showing you their love. Also, remember that we are all different people and react to circumstances differently. So don't forget to talk and try to understand where you both are.

I am truly lucky to have my wife, Diana. I just try to remember that when I am going through hard times, she is too. I love my wife and know I am the luckiest person in the world. I also know I can do better and try every day to be better than the past day. I sometimes fail, but I am always a work in progress. Aren't we all?

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