Seventeen months ago I went from being the chronically ill person in my marriage, to simultaneously being a caregiver. I have been living with spondylitis and rheumatoid arthritis for over 23 years. Just to keep things interesting, my husband’s genes decided to trigger and he developed severe Celiac Disease that is still not well controlled. Our world quickly turned into being able to speak the same autoimmune ‘language’ – a language you never want someone you love to know.
Luckily, my years of experience helped us. I was able to expedite my husband’s testing, diagnosis, and plan for treatment. Expedite is the nice way of saying I put my foot down, and demanded what we needed. If we didn’t get what we needed, a doctor or two found themselves fired.
My husband hates the word “caregiver” and I have my hunches why. He’s always prided himself on being able to take excellent care of me, of being able to make my life easier. But to suddenly instead be the one who needs, now that’s a different story.
But maybe I am wrong, so I asked him. The discussion did not head in the direction I expected. What I learned from interviewing him, is that more than anything, we as a society need to look out for the caregivers in the world. Just be there for them. And those of us who have diseases? We need to give our caregivers time to decompress, and let them escape. It’s only fair, seeing as I try to do the same.
After this conversation with my husband, I plan to find more ways to ‘escape’ together, to relax, to focus on just being us as people, not patients. That way we are more mentally recharged and able to care for each other and meet the challenges at hand.
So, I present to you, a discussion with my husband on our ever-expanding roles as people who have chronic illnesses and are caregivers:
Me: Why do you not like using the word “caregiver”?
J: It feels like it implies I can’t do anything for myself, when in reality I can do almost everything for myself. In our marriage, I am still doing most of the caregiving. When I go down in a bad way, I can’t. When you’re there and offer help, of course I’ll take the help. I view it as we’re married and we take care of each other.
Me: So what would you call it when I take care of my brother or mother who also live with chronic diseases?
J: Sister, daughter, or even friend. To me it doesn’t seem like it needs its own term. This is just what we do.
Me: What was it like to be the healthy one in our marriage for so many years, and caring for me?
J: Hyper-stressful. Stress to the point of maybe triggering my own problems. In no way is it a small undertaking. The less money you have, the more stressful it is. The unhealthy person was working the most, and I was trying to support you through that, while also trying to find a steady job.
To be honest, I hated that time in my life. It didn’t help that I didn’t like where we were living, and our environment. I didn’t have support, because no one understood the kind of undertaking it is. Even my family and close friends don’t understand.
Me: Have you thought about asking your friends and family for support?
J: I feel like I can’t ask them for support. I don’t feel entitled to support. If there was a better understanding of our situation, then it would have been easier to accept the support.
I just wish people would do it on their own instead of feeling guilted into supporting the caregiver, or feeling like they have to do it.
Me: What does it mean to “do it on their own?"
J: I’m only referring to our inner circle of people. It’s not about understanding our diseases per se – it’s about understanding the undertaking our combined health is in our lives. Just a little understanding. So I could call someone for support if I ever needed to.
Me: What would that support look like?
J: I don’t know, haven’t had it** Me:** Are you talking about mental support, or physical support – like bringing a homemade meal over?
J: Just lending an ear. Someone I can vent to, that’s really all I need.
Me: Do you think there is a way our doctors could help facilitate better support?
J: No. I think it would be too much on top of what they already have to deal with in their job.
Me: What could I have done better to help you when you were the only caregiver in our marriage?
J: Honestly, I’ve never thought about that. It’s in the past, and I would rather move forward. I prefer to think of what I can do more now, what I can control.
Me: So often my health is out of control, how do you feel during those times?
J: At times I felt helpless. Here in Los Angeles I don’t felt helpless. The doctors we used to have were never up to par with the severity of your diseases—they were never going to get you the help you need. We weren’t going to routinely drive six hours for better doctors. Now, we have access to better doctors. That gives me peace of mind. I don’t think we think about that enough. That our current location gets us excellent care.
Me: Do you think the access to better healthcare reduces your burden as a caregiver?
J: Your doctors here are willing to take risks and make decisions. That gives me physical stress relief, but also mental support – I’m not the only one fighting for your health.
Me: How has caregiving changed for you since you’ve been sick?
J: Depending on the day it can be harder. If you really need a lot of caregiving, and I’m not feeling well, it can be tough. Whoever is feeling the worst gets the most care.
Me: What have we learned in our marriage since you got sick? Do you think we communicate better? Perceive each other’s needs better? Make the day-to-day easier for each other?
J: That. That’s exactly what I was going to say.
Me: So at the end of the day, what do you think has changed now that we both live with autoimmune diseases?
J: I feel like we’re emotionally closer.
Me: Yup. I completely agree. What advice do you have for other caregivers?
J: Why worry, we’re all gonna die anyways.
Me: That’s a little morbid!
J: I’m still just taking it one day at a time, I’m still learning. Take it one situation at time. When you get a health event behind you, don’t keep thinking about it. Move forward with life.
Me: What one way do you care for yourself as a caregiver?
J: I try really hard not to think about the things I have to do as a caregiver. That’s probably another reason I don’t like to think of myself as a caregiver.
Me: Let me ask that another way, what hobbies help you relax?
J: Watching sports or movies, listening to records – anything to take my mind off it, and just be me, and not a caregiver for as long as I can.
Me: This isn’t the discussion I expected, lol!
J: Well, you wouldn’t have wanted to marry me if you always knew what to expect from me!
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