Chad and Kisstopher Musick are Twitter’s favorite couple. Kisstopher is a psychologist and Chad is a writer and an editor, a mathematician and computer programmer. They are both so loving, supportive, and funny; they bring so much joy to all of their mutuals. They share an account but you can always tell who’s tweeting. Chad and Kisstopher are both in their forties and have been married for 20 years; they met in college.
What illnesses have you been diagnosed with?
K- Lupus and hereditary coproporphyria (HCP)
C- In alphabetical order: ankylosing spondylitis (a kind of arthropathy, similar to arthritis), asthma, autism (but not an illness), epilepsy, and psoriasis. These are the ones that stuck -- I was diagnosed with a variety of joint conditions before being finally diagnosed with AS and having that confirmed.
What's your primary or most pervasive diagnosis?
K- Lupus
C- Autism probably affects me most pervasively, but I find it kind of boring to talk about most times. It’s just how I think, and I wouldn’t change it if I could.
Day-to-day, ankylosing spondylitis probably affects me most because it causes chronic pain in my spine and joints. I use a walking cane, which helps a lot.
The epilepsy is less predictable, which is worse, in some ways. I have to keep to a pretty strict wake/sleep schedule and take a nap every day. I wear a pair of Zeiss Z1 F133 Claret lenses to cut down on the number of seizures because I’m very photosensitive. They’re blue, and extremely dark, cutting 80% of all light and more than 95% of red light. My vision is limited to about 25 feet when I’m wearing them, and a lot of people comment that they’re uncomfortable not being able to see my eyes.
When were you diagnosed?
K- When I was 35
C- Throughout my life. I was diagnosed with asthma when I was 7, and misdiagnosed with Osgood-Schlatter around the same time. I wasn’t diagnosed with the other things until my mid 20s, although my first memory of a seizure being reported to me is also when I was 7. My parents were told it was a side effect of the asthma medication. I was only recently diagnosed with AS, after being misdiagnosed with a variety of other types of arthritis. The funny (but not really) thing about that is that my mother had ankylosing spondylitis, and it’s known to have a strong genetic component, so it should have been an easy win for diagnosis.
How has your illness affected your relationship?
K- Because Chad was integral to me getting a diagnosis, it initially brought us closer together. After about a year of looking for effective treatment, it became more challenging for Chad who wanted me to focus on creating a sustainable life rather than continue to look for a doctor who could make me “better”. I was really focused on getting “better” or cured for about 3 years and for me that was unhealthy because there is no cure. The best I could hope for was management of my symptoms. It took me about 5 years to accept that “better” was not in the cards for me and that I needed to stop chasing ways to fix my illness and instead focus on living with my illness.
It was really hard for Chad because he felt the doctors were taking advantage of me and actually making my health worse with ineffective treatment. He was supportive of me, but it was clear to me that he was unhappy with my quest. He went to all of my doctor appointments with me. After each appointment, we would talk about what the doctor advised. A big issue is that a lot of treatments for lupus involve steroids, which I cannot use due to my HCP. In the end, all the doctors could actually do was give me pain medication.
C-I think it’s caused both of us to reveal our true selves a lot more quickly, which has been really good for communication. Because I have a lot of seizures (I have mostly focal seizures, so it’s not a major physical event), my memory can be extremely erratic. I have to trust absolutely that Kisstopher is not lying to me about when I said/did during a seizure. She and our son are the only people in my life who have that level of trust from me.
Aside from that, it’s made us both a lot more patient. We plan things in advance, and we usually make backup plans if it’s far in the future so that we can accommodate the other one not being able to do something.
What illnesses have you been diagnosed with?
K- Lupus and hereditary coproporphyria (HCP)
C- In alphabetical order: ankylosing spondylitis (a kind of arthropathy, similar to arthritis), asthma, autism (but not an illness), epilepsy, and psoriasis. These are the ones that stuck -- I was diagnosed with a variety of joint conditions before being finally diagnosed with AS and having that confirmed.
What's your primary or most pervasive diagnosis?
K- Lupus
C- Autism probably affects me most pervasively, but I find it kind of boring to talk about most times. It’s just how I think, and I wouldn’t change it if I could.
Day-to-day, ankylosing spondylitis probably affects me most because it causes chronic pain in my spine and joints. I use a walking cane, which helps a lot.
The epilepsy is less predictable, which is worse, in some ways. I have to keep to a pretty strict wake/sleep schedule and take a nap every day. I wear a pair of Zeiss Z1 F133 Claret lenses to cut down on the number of seizures because I’m very photosensitive. They’re blue, and extremely dark, cutting 80% of all light and more than 95% of red light. My vision is limited to about 25 feet when I’m wearing them, and a lot of people comment that they’re uncomfortable not being able to see my eyes.
When were you diagnosed?
K- When I was 35
C- Throughout my life. I was diagnosed with asthma when I was 7, and misdiagnosed with Osgood-Schlatter around the same time. I wasn’t diagnosed with the other things until my mid 20s, although my first memory of a seizure being reported to me is also when I was 7. My parents were told it was a side effect of the asthma medication. I was only recently diagnosed with AS, after being misdiagnosed with a variety of other types of arthritis. The funny (but not really) thing about that is that my mother had ankylosing spondylitis, and it’s known to have a strong genetic component, so it should have been an easy win for diagnosis.
How has your illness affected your relationship?
K- Because Chad was integral to me getting a diagnosis, it initially brought us closer together. After about a year of looking for effective treatment, it became more challenging for Chad who wanted me to focus on creating a sustainable life rather than continue to look for a doctor who could make me “better”. I was really focused on getting “better” or cured for about 3 years and for me that was unhealthy because there is no cure. The best I could hope for was management of my symptoms. It took me about 5 years to accept that “better” was not in the cards for me and that I needed to stop chasing ways to fix my illness and instead focus on living with my illness.
It was really hard for Chad because he felt the doctors were taking advantage of me and actually making my health worse with ineffective treatment. He was supportive of me, but it was clear to me that he was unhappy with my quest. He went to all of my doctor appointments with me. After each appointment, we would talk about what the doctor advised. A big issue is that a lot of treatments for lupus involve steroids, which I cannot use due to my HCP. In the end, all the doctors could actually do was give me pain medication.
C-I think it’s caused both of us to reveal our true selves a lot more quickly, which has been really good for communication. Because I have a lot of seizures (I have mostly focal seizures, so it’s not a major physical event), my memory can be extremely erratic. I have to trust absolutely that Kisstopher is not lying to me about when I said/did during a seizure. She and our son are the only people in my life who have that level of trust from me.
Aside from that, it’s made us both a lot more patient. We plan things in advance, and we usually make backup plans if it’s far in the future so that we can accommodate the other one not being able to do something.
How has having a disabled partner been a benefit?
K- I feel like Chad gets what it is like when the mind wants to do something my body just can’t do. He understands the frustrations of doing everything right to manage my illness and still having really bad flares. It is nice that our home is free of ableism. I never feel judged by Chad, and that allows me to not feel defensive when I flare, which leads to better self-care and total honesty about where I am at physically.
C- I’m not sure how to answer this generally. Kisstopher being my partner has been a benefit because she’s the kindest, most insightful, most delightful person I know, aside from the obvious beauty. Because she’s disabled, I feel like she’s a lot more patient with me than someone who isn’t would be. She knows if I say I can’t do something, I really mean it, for example. There’s no pressure to just “push it through”.
Do either of you wish you could do more for your partner?
K- I think we both do. I wish there was a way to prevent Chad from being hit by random visual stimuli that causes seizures. There are times when Chad will be online and not aware that his screen has a strobe or flash pattern that will trigger a seizure. Chad is often unaware that he has had a seizure, especially when he is online. I wish there was a filter for such things. I also wish movies would come with a warning.
C- Always and no, at the same time. If I could cure what she’s got or even take some of it to share, I would, but that’s easy to say since it’s an impossibility. When there’s something I want to do for her, I generally just do it. It took a lot of years to learn how to listen when she’s not looking for a solution.
What do you do to maintain a good relationship when you or your partner isn't well?
K- Patience with myself and with him. It is helpful to keep in mind that even when he does everything he can to avoid being sick, he still has bad weeks. We also talk a lot about what we need when we are sick. We have these talks when we are both doing well. We also debrief after one of us is sick to check in and see what we did well and what we can improve on for the next time. We are both really focused on being a good source of support.
C- We give each other enormous amounts of slack. We talk a lot, and if one of us (usually me) is having a non-verbal day, the other one generally lets them or says it’s really important to talk anyway. There’s lots of compassionate touch, just reaching out and putting a hand on each other to say “I’m here”.
What do you think you could do to improve your relationship?
K- Our relationship is really solid and in a terrific place. I think we need to keep doing what we are doing. I honestly am completely fulfilled and happy with where we are at and what we are doing.
C- Get older. I know this seems a little flippant, but I’m so much more in love with her than when we got married. Our relationship just seems to get stronger every year. I think a key to that is developing absolute trust about who each other is. For example, I wash/dry all of our laundry, and I might tell Kisstopher I’m going to do a load but then forget. But she knows forgetting is part of my problem, so that’s not a violation of trust. We talked a lot when we became a couple about what we needed from each other, and it’s a conversation we still have because our needs are continually changing.
What is it like parenting with disability?
K- It was great in that it allowed us to raise a child that understands how harmful ableism and bias is. It also made us aware of the need to truly co-parent. I think we did a great job turn-taking and dividing labor fairly and specifically to us. I’ve never parented without one, and my mom and grandparents were all disabled, so I’m not sure what it would be like without one.
K- I feel like Chad gets what it is like when the mind wants to do something my body just can’t do. He understands the frustrations of doing everything right to manage my illness and still having really bad flares. It is nice that our home is free of ableism. I never feel judged by Chad, and that allows me to not feel defensive when I flare, which leads to better self-care and total honesty about where I am at physically.
C- I’m not sure how to answer this generally. Kisstopher being my partner has been a benefit because she’s the kindest, most insightful, most delightful person I know, aside from the obvious beauty. Because she’s disabled, I feel like she’s a lot more patient with me than someone who isn’t would be. She knows if I say I can’t do something, I really mean it, for example. There’s no pressure to just “push it through”.
Do either of you wish you could do more for your partner?
K- I think we both do. I wish there was a way to prevent Chad from being hit by random visual stimuli that causes seizures. There are times when Chad will be online and not aware that his screen has a strobe or flash pattern that will trigger a seizure. Chad is often unaware that he has had a seizure, especially when he is online. I wish there was a filter for such things. I also wish movies would come with a warning.
C- Always and no, at the same time. If I could cure what she’s got or even take some of it to share, I would, but that’s easy to say since it’s an impossibility. When there’s something I want to do for her, I generally just do it. It took a lot of years to learn how to listen when she’s not looking for a solution.
What do you do to maintain a good relationship when you or your partner isn't well?
K- Patience with myself and with him. It is helpful to keep in mind that even when he does everything he can to avoid being sick, he still has bad weeks. We also talk a lot about what we need when we are sick. We have these talks when we are both doing well. We also debrief after one of us is sick to check in and see what we did well and what we can improve on for the next time. We are both really focused on being a good source of support.
C- We give each other enormous amounts of slack. We talk a lot, and if one of us (usually me) is having a non-verbal day, the other one generally lets them or says it’s really important to talk anyway. There’s lots of compassionate touch, just reaching out and putting a hand on each other to say “I’m here”.
What do you think you could do to improve your relationship?
K- Our relationship is really solid and in a terrific place. I think we need to keep doing what we are doing. I honestly am completely fulfilled and happy with where we are at and what we are doing.
C- Get older. I know this seems a little flippant, but I’m so much more in love with her than when we got married. Our relationship just seems to get stronger every year. I think a key to that is developing absolute trust about who each other is. For example, I wash/dry all of our laundry, and I might tell Kisstopher I’m going to do a load but then forget. But she knows forgetting is part of my problem, so that’s not a violation of trust. We talked a lot when we became a couple about what we needed from each other, and it’s a conversation we still have because our needs are continually changing.
What is it like parenting with disability?
K- It was great in that it allowed us to raise a child that understands how harmful ableism and bias is. It also made us aware of the need to truly co-parent. I think we did a great job turn-taking and dividing labor fairly and specifically to us. I’ve never parented without one, and my mom and grandparents were all disabled, so I’m not sure what it would be like without one.
What were the victories? The challenges?
K- The biggest victory for me is that our son who is now 24 years old feels loved and is happy. He also is very unbiased and considerate. My biggest challenge was finding time for myself and maintaining good self-care. I still struggle to take time off and prioritize myself.
C- Between me and Kisstopher, I think the victory is that our son is grown and well-adjusted and says he’s happy most of the time. My parents pressured me to “live up to my potential” a lot, and I tried to keep myself from putting that pressure on our son.
A couple of years before we moved to Japan, Kisstopher was hospitalized for about six months, and the doctors kept telling us she was going to die. There are things we would have done differently as parents if we’d known she wasn’t, but I think we did our best at the time.
What could you have done better?
K- I wish that I had been more patient with myself.
C-My mom died when I was 13, and they kept insisting right up until she went into a coma that she was going to be just fine. We kept our son updated on what was going on. If we’d known Kisstopher was going to live, I might have kept more of that from him.
How has your illness affected your activities you do as a couple for fun?
K- We tend to do indoor actives and rarely go out together. When we do go, it is always well planned. For Chad, we need to be aware of lighting and noise. For me, we need to be aware of how much walking there will be. I often need to rest due to muscle fatigue.
C- There are a few things we like to do--rafting in particular--that are fairly strenuous. We end up canceling and rescheduling things like that a lot. We’ve also got some low-energy activities. We do jigsaw puzzles together, which is very low stress. We can sit and puzzle together for 5 minutes or 5 hours, sometimes talking the whole time and sometimes silent and just enjoying each other’s company.
The main limitation is that I don’t drive. I used to ride a bicycle, but I had a near-fatal accident about 5 years ago and don’t really ride since then. When we plan activities, we prioritize in advance, so that we can cancel the things we least wanted to do and still get our favorites done. For example, we love Cirque du Soleil and have attended every visiting show since 1999 and a few of the shows in Vegas. We plan for that as soon as a show is announced, about 9 months in advance. Both of us can medicate enough for a single outing if we know it’s coming.
What advice do you have for disabled couples?
K- Talk about how their disability affects them. Read about your partner’s disability and then ask them if the information reflects their experience. Be supportive when your partner is struggling. Be aware of ableism and do your best to recognize and deconstruct your own ableism.
C- Give yourself the same compassion you give your partner. If you don’t have compassion for your partner, your relationship probably won’t last long, but most Disabled people I know are a lot harder on themselves than on other Disabled folks. When I remind myself to give myself compassion, it helps me be a better partner because I don’t put the emotional burden on Kisstopher of reassuring me that I’m “worth” it. She doesn’t mind doing it, just like I don’t mind doing it if she needs, but it’s just a lot of unnecessary suffering to beat yourself up over things that are out of your control.
Establish limits about what you will and won’t share about each other’s disabilities. I don’t talk about Kisstopher’s disabilities much because it’s her story to tell. She’s open about what she has, but I generally point people to what she’s already said if they want to know more. Because even though I see it every day, I don’t have lupus or porphyria. I know what it’s like to witness them, but not to have them. Remembering that and affording her whatever privacy she wants seems important, and she does the same for me.
These two are so awesome! I hope this chat with them has been helpful for you.
K- The biggest victory for me is that our son who is now 24 years old feels loved and is happy. He also is very unbiased and considerate. My biggest challenge was finding time for myself and maintaining good self-care. I still struggle to take time off and prioritize myself.
C- Between me and Kisstopher, I think the victory is that our son is grown and well-adjusted and says he’s happy most of the time. My parents pressured me to “live up to my potential” a lot, and I tried to keep myself from putting that pressure on our son.
A couple of years before we moved to Japan, Kisstopher was hospitalized for about six months, and the doctors kept telling us she was going to die. There are things we would have done differently as parents if we’d known she wasn’t, but I think we did our best at the time.
What could you have done better?
K- I wish that I had been more patient with myself.
C-My mom died when I was 13, and they kept insisting right up until she went into a coma that she was going to be just fine. We kept our son updated on what was going on. If we’d known Kisstopher was going to live, I might have kept more of that from him.
How has your illness affected your activities you do as a couple for fun?
K- We tend to do indoor actives and rarely go out together. When we do go, it is always well planned. For Chad, we need to be aware of lighting and noise. For me, we need to be aware of how much walking there will be. I often need to rest due to muscle fatigue.
C- There are a few things we like to do--rafting in particular--that are fairly strenuous. We end up canceling and rescheduling things like that a lot. We’ve also got some low-energy activities. We do jigsaw puzzles together, which is very low stress. We can sit and puzzle together for 5 minutes or 5 hours, sometimes talking the whole time and sometimes silent and just enjoying each other’s company.
The main limitation is that I don’t drive. I used to ride a bicycle, but I had a near-fatal accident about 5 years ago and don’t really ride since then. When we plan activities, we prioritize in advance, so that we can cancel the things we least wanted to do and still get our favorites done. For example, we love Cirque du Soleil and have attended every visiting show since 1999 and a few of the shows in Vegas. We plan for that as soon as a show is announced, about 9 months in advance. Both of us can medicate enough for a single outing if we know it’s coming.
What advice do you have for disabled couples?
K- Talk about how their disability affects them. Read about your partner’s disability and then ask them if the information reflects their experience. Be supportive when your partner is struggling. Be aware of ableism and do your best to recognize and deconstruct your own ableism.
C- Give yourself the same compassion you give your partner. If you don’t have compassion for your partner, your relationship probably won’t last long, but most Disabled people I know are a lot harder on themselves than on other Disabled folks. When I remind myself to give myself compassion, it helps me be a better partner because I don’t put the emotional burden on Kisstopher of reassuring me that I’m “worth” it. She doesn’t mind doing it, just like I don’t mind doing it if she needs, but it’s just a lot of unnecessary suffering to beat yourself up over things that are out of your control.
Establish limits about what you will and won’t share about each other’s disabilities. I don’t talk about Kisstopher’s disabilities much because it’s her story to tell. She’s open about what she has, but I generally point people to what she’s already said if they want to know more. Because even though I see it every day, I don’t have lupus or porphyria. I know what it’s like to witness them, but not to have them. Remembering that and affording her whatever privacy she wants seems important, and she does the same for me.
These two are so awesome! I hope this chat with them has been helpful for you.
