Thrown into the Deep End: Concerns of a Novice Caregiver
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After that painful, sleepless night in the fall of 2006, Lisa finally received a diagnosis. What caused the pain and discomfort in her extremities? It was rheumatoid arthritis. Although the good news was that with the diagnosis, medication could be prescribed to help alleviate her symptoms, the bad news was that Lisa had now been diagnosed with a second autoimmune disease.

I’d naturally been concerned after Lisa had been diagnosed with MS about eighteen months earlier. I knew MS was a progressive disease that could have a significant impact on quality of life. But I also knew that medications available to control the symptoms of MS had improved since I’d first learned about the disease as a child. Thus, while discouraged and worried about Lisa’s MS diagnosis, I tried to maintain a cautious sense of optimism that our life together wouldn’t suddenly change overnight. And so far, she had responded well to her MS medication.

Her RA diagnosis, however, left me with a much greater feeling of anxiety about what it would mean for us as a couple. This was because the RA had a much more overt effect on her. Just looking at her swollen fingers and hands and watching her suffer from the pain in her joints made it clear to me that the disease was impacting her. As she sought a proper diagnosis, she experienced this sort of pain and discomfort almost daily and I had lots of questions.

Would her pain continue even after she’d been diagnosed and could be put on a medication? What could I do as a caregiver to help her, or support her? Could I even serve as an effective caregiver? I just didn’t know what to do.

All of these questions swirled around in my head, but the last question worried me the most. I knew very little about health and wellness. Throughout my life I’d been largely free of health issues. As I child I had regularly caught cold with season changes and occasionally got sick just as everyone does. And sure, I’d had my share of bumps and bruises doing what children do; wandering through the woods, playing pick-up sports with the local kids, riding bikes in the neighborhood, and so on. But I’d somehow gotten through childhood without any trips to the ER.

My good fortune has continued into adulthood. The only serious health issues I’ve experienced, even now in my mid-40’s, are all basketball related; one broken wrist over twenty years ago and two dislocated kneecaps. As you might expect, I don’t set foot on the court much anymore.

My background left me feeling completely lacking when it came to what I could do for Lisa. I didn’t have any ongoing health concerns, rarely visited the doctor, and just as rarely had to take medication. I felt ill-equipped to navigate the healthcare system. Even more worrisome to me, I was deeply concerned that I lacked the empathy and awareness to provide Lisa effective and timely assistance when she needed it. As Lisa faced two serious diseases, MS and RA, I could only wonder if I’d be able to manage as a caregiver.

These concerns still trouble me and thus seem good topics to explore further. One positive which helps me is knowing that I’m not alone in this journey; Lisa and I are learning and growing together.

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7 comments on “Thrown into the Deep End: Concerns of a Novice Caregiver

  1. TracyE says:

    Thank you. I enjoyed reading. I am a Registered Nurse and newly (self lol) diagnosed (one of the things my doctor loves, I’m less work for him). Being the nurse, I am always the care giver. This provides many issues. My husband don’t know what to do or say which makes him frustrated which in turn makes me frustrated.

  2. Kari says:

    Really love this post! My boyfriend shuts me out when he is frustrated with my health. He could use a chat with you Thank you for posting this and all the other posts as a caregiver!

  3. Rob author says:

    Hi Kari,

    Your comment prompted me to re-read this post, so thanks! I’ve written several articles about care-giving which you are welcome to read. I’m still learning about the whole care-giving thing, so I certainly don’t consider myself an expert. However, I’m encouraged when folks are able to take a little something from my articles. We’ve got a fantastic bunch of writers here on RA.net, so please also explore their work!

  4. swbw says:

    Kari,
    I feel for you…and your boyfriend. Before I became ill, I was not always as understanding about the health issues of others as I should have been. Now that I am the one with an illness that no one can see, I have apologized to some of the people that I was insensitive too. That being said, it is better to stay away from people who put you down or ignore you or ridicule you for being unable to function as they do. The stress of being under constant condemnation from a difficult partner actually has very negative consequences for anyone’s health. My husband has finally come around to be kind and loving to me after 30 years of marriage…but I am not sure I would go through it again.

  5. Jillian S moderator says:

    Swbw,
    Thank you so much for your feedback. It sounds like you have come a long way since your diagnosis. It takes a lot of courage to go back and apologize to people for something you may have did or said in the past. RA is difficult enough to live with and having a partner who can’t understand that might not end up so well. I am glad that your husband is kind and loving to you even though it took some time. Please know that you aren’t alone and that many who live with a chronic illness, not just RA, have more difficulty finding balance in their relationships. I thought you might enjoy reading more about this topic: https://rheumatoidarthritis.net/living/relationships-illness-a-chronic-problem/
    We hope to hear from you soon.
    Best,
    Jillian (Rheumatoidarthritis.net Team)

  6. Kelly Mack moderator says:

    Excellent post Rob and you bring up some great, honest questions. From a patient perspective, I deeply appreciate the time and effort my family members, friends and husband have contributed to caregiving. It is not an easy road, but I think it is also a journey people appreciate because it brings them a different perspective on life. Thanks for sharing your story.

  7. Rob author says:

    Thank you for your kind note, Kelly. I hope the article helps add a little perspective about what might be running through the mind of a caregiver as they learn that a loved one has a serious disease. Just as each patient’s experience will be their own, so it is that each caregiver’s experience will be a little different and I think it its important to recognize this.

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