joint decisions

Letting in a Caregiver on Your Chronic Illness Journey

I was a sophomore in college when I met my husband, T. I mentioned on our first date that I had “this arthritis thing” that made some days rough, but left it at that.
Us circa 2007
As time went on, T expressed more curiosity about my illness. I did not know much about it either, so I took to the Internet. First, I started blogging so that I could help T see what kinds of issues I was dealing with without talking directly to him. I didn’t have the best emotional support growing up so discussing a chronic illness was scary. 
Describing my arthritis through writing removed some of the emotion from the situation. It also allowed T and me to develop ways to research medications and other issues on our own, but to then also come together to discuss once we both had an understanding of the issue at hand.
I refused to think of T as a caregiver for a long time. Even now, I hesitate. There can be such a negative connotation to that word. It implies some loss of dignity that doesn’t need to be there. Even if my husband occasionally has to help me walk to the bathroom or wash my hair, that doesn’t mean I am worth any less than him – and he’s not worth less than me. My husband has helped me understand diagnoses, find medications, take care of myself and accomplish my dreams. He takes on so much more at home when I cannot function as well. He pushes me to take care of myself and helps me get better care from my healthcare team.
If there is a better definition for a caregiver, I don’t know it.

Us at Crater Lake in 2010

Our relationship is unique in the fact that T has health issues of his own. We routinely find ourselves on a see-saw, switching from more balanced in health to ups and downs. The fact that we figured out how to talk about my health issues has helped us work on his as well.
It took a long time and a lot of work for both of us to get to the point where we started understanding my physical limits. For a long time, the biggest issue was that I wasn’t communicating my needs or pain to T. Without doing that, it made it hard to recall issues to bring up at medical appointments and more. I had to break the wall I had built initially so I wouldn’t scare him away, and it was the hardest thing I’ve ever had to do. There is a vulnerability inherent in sharing your intimate life with someone in such a way. 
It’s easy to celebrate the successes with others, but harder to include them in the struggles.
The biggest turning point happened when I was still in college. We were driving somewhere and listening to 10,000 Maniacs. T searched for a song called Trouble Me and asked me to listen to it, saying that it reminded him of me:
Trouble, trouble me
Disturb me with all your cares and your worries
Trouble me
On the days when you feel spent
Why let your shoulders bend underneath this burden
When my back is sturdy and strong?
Trouble me 
I lost it and started crying. I was so used to having to cover up my illness issues to make other people feel comfortable.
Us at our wedding in August 2014
I know that I am incredibly fortunate to have such a supportive and helpful husband. T supports me wholly in managing my disease and treatments. He has a better memory than I do about my pain. We sit down before most rheumatologist appointments and discuss what has happened since my last communication with the clinic. We routinely look at medicine changes. 
Heck, we do that with just about every healthcare provider I see. I always text him after appointments with the key points and then we discuss once we’re both at home. This helps me to remember the important things.
This post is especially timely as I’m wrapping up my last two weeks of working in my current position. I currently do not have another job lined up. I’m nervous, but also excited. See, leaving my job was T’s idea. I’ve been in a flare-up of my fibromyalgia and missing at least one day of work every two weeks if not every week. The strain of my illness activity along with immense stress at work has taken a toll on both my physical and mental health. 
It was hurting me to keep pushing and it was hurting him to watch the cyclone of pain continuing to grow.
If I wasn’t sharing so much with him and allowing him to carry some of the weight of my illnesses, this would not have come up. By allowing him to share fully and wholly in my life, we’ve bettered ourselves as people and our relationship. 
Another amazing wedding picture
We certainly laugh a lot more.

I have learned that it is okay to ask for help and be unable to do things instead of stubbornly trying and winding up in pain. 
I still choose how much information I share with him. Some days, it is because I know he is under stress or dealing with his own illness issues. Other days, it is because I don’t want to admit to myself how I am truly feeling. As long as we are both involved in what affects our quality of life as a couple, we do well. 
This post is sponsored by Joint Decisions, an educational initiative developed by Janssen Biotech, Inc. that empowers people living with RA to take a more active role in the management of their disease and have more open and honest conversations with their doctors. I was compensated by Janssen for my time spent collaborating on content for Joint Decisions.

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