Learn Something! / Other / Tips & Tricks for Illness Management

In Sickness and in Health – When Sickness Comes First 


I just got home from my appointment, which went well. It was a long day; we left at noon and got home at eight-thirty.

I am not thinking about what a long day it was. What I am thinking about is my husband, Jake. I am feeling very appreciative to him for driving me to all these appointments, hours away, then sitting around for an hour or two while I have the actual appointment and testing. I cannot imagine how different my perspective on days like today would be if I had a husband who groaned about being my chauffeur.

I was already in the sickness part of “in sickness and health” when Jake and I started dating, but that did not deter him. 

We have been presented with many challenges as a result of my illness – challenges as a couple, and challenges as individuals. I am not going to say this aspect of our relationship has been (or is) easy or fun for either of us. That would be a lie. It is hard being sick, and it is hard having a sick spouse. He and I each have our sensitive spots when it comes to the effect my illness has on our lives. We miss out on a lot of “normal” things for couples our age. When I have to stay behind at home, it isn’t only me missing out. He is missing out on getting to enjoy doing things with his wife. It is nobody’s fault, but the fact is, these things are difficult, and coping with them requires ongoing effort and communication. 

That said, I can honestly say we are happy, we both try our hardest, and we make the best of our situation. When my health presents an opportunity to have fun and get out of the house together, we seize it. We laugh together regularly, just like in the wedding photo at the start of this post. 

We even manage to turn appointment excursions into dates by tacking on dinner afterwards. Sometimes that means ordering dinner to go and eating it in the car … or me watching him eat in the car. Today, we ate inside the actual restaurant! On top of that, we went into a store and picked out a new comforter afterwards. 

(I know. An appointment, dinner, and a store all in one day; I’m wild! I will have a hangover tomorrow. Seriously though – I will. No alcohol required. 😀)

My husband and I treasure moments most couples get to take for granted. I wish eating at a restaurant then running into a store together wasn’t a notable event to us. However, since it is, I feel fortunate to have a husband who places as much value on days like today as I do. 

18 thoughts on “In Sickness and in Health – When Sickness Comes First 

  1. I seem to be a serial commenter but I again want to say thank you. I am single and I have Illnesses under the dysautonomia umbrella. I suffer much like you but I have good months and bad. I have thought about marriage and dating for that purpose and I started to feel selfish for thinking of that. I felt like I would get someone who would satisfy the things I needed but then I thought about the things I could not offer my husband. I started to feel like it would be too much to start something like this with my issues. Most people get together and get sick but not many people meet sick. It has been an internal struggle and one filled with prayer. I know that if it is for me then he is going to have to be one special man because illness or not, I am a special lady. Thank you for sharing

    Liked by 1 person

    • Nicole, thank you for the feedback, and for being a serial commenter! I love your comments.

      I actually hesitated before writing this because it is pretty personal. However, I realized it is no secret that one partner being disabled presents a challenge to a relationship. Maybe I will write more in the future (if my husband is comfortable too).

      It absolutely is not selfish to get into a relationship! I am sort of repeating what I said in my reply to Kelsey, however my view is that it is not up to you to determine if dating you is “worth it” to someone. Most people have something about them that would be “deal breakers” to certain people, and no big deal, or worth it, to other people. You’re right that you are a special lady. If someone sees how special you are, and thinks that your illness is small potatoes compared to what you have to offer, then that’s their decision, not yours! Just how if you meet someone and think they are wonderful enough that it is worth feeling a little more sick sometimes in order to have a relationship with them, then that is your decision.

      Lastly, I know you have plenty to bring to the table. You might not be able to offer certain things due to your illness, but there is plenty you DO have to offer that is unique to you. I could be the healthiest girl in the world, but if certain unique traits, characteristics, etc. about myself were taken away, Jake and I would be a horrible match – the good health wouldn’t matter! I am not minimizing what a huge obstacle me being this sick is to us as a couple, rather I am saying it is a surmountable obstacle.

      Check out my Mom’s comment as well. 🙂

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  2. This makes me so happy to read. The first time Sean and I hung out, he came to make me dinner at my apartment in Bloomington. About 20 minutes into cooking, I had a seizure. At that point in our relationship (if you call it that) he hadn’t experienced much of my illness. But ya know what? He stuck around. From that day forward, I knew he could handle it. He knew the very basics about what was going on, but it wasn’t much. I’m so so lucky to have someone who understands my bad days, buys me chicken broth when thats all I want, sits with me in the hospital about every 5 months haha, loves me even when I can’t get out of bed, drives me to Mayo Clinic every 3 months, (which this time coming up is our “honeymoon” so hes already promised fun things) and just loves me every single day.

    Way to go Jake. I can tell you this, the couple of times I’ve seen him lately, he just beams when you get brought up. You’ve got one hell of a husband!

    Liked by 1 person

    • Aww! I love your and Sean’s first date story. Thank you for sharing it.

      Needing to handle chronic illness definitely provides a level of closeness (or, sadly, distance) as a couple that I think there is no other way to get. Many people don’t deal with this sort of stuff until they are old and have had decades together.

      I agree I snagged myself one hell of a husband, and it sounds like you did too!

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  3. This has been on my mind a lot recently. I’m newly diagnosed with POTS but I’ve been sick for a long time. I’ve been thinking a lot about being the “sick person” in my relationship and feeling like I don’t bring a lot to the relationship because I’m not feeling well a lot of the time. I don’t understand why my partner would actually be with me and put up with the ups and downs. I feel like a burden so I rarely ask him for help. Do you ever feel this way? If you do, how do you resolve those feelings? I’m having a lot of trouble staying positive right now.

    Liked by 1 person

    • I used to have similar insecurities. I didn’t doubt all of the great things about me and what I bring to our relationship, however I would still feel really sad for him that he has a sick partner. Then, I slowly realized that I cannot make his choices for him. I also realized I would not survive with my sanity in tact if continued feeling sorry for someone over ME. Him being with me is his choice, and he thinks it is a good one. Lots of people have something about them that would be a “deal breaker” to many potential partners, but when they find the right person, it isn’t a big deal.
      I slowly came to the realization that if he doesn’t think he can handle my illness any longer, then that was his job to identify and let me know. I don’t need to constantly be thinking about whether or not it is worth it to him. Once I accepted this, I began feeling a lot better. It also was helpful for Jake when I accepted this. Imagine having to convince your partner you think you’ve made a good choice by choosing them when you have done nothing to make them thing otherwise. That is frustrating!
      My job is to take care of myself, do the things that are “my job” in our relationship, be sure he knows I appreciate him, never take all the things he does for granted, and keep the lines of communication open. It is fine for me to expect him to help me with my illness – that is what partners do for one another. I am sure you offer your partner help in areas in which you are more capable. Don’t lose sight of that!

      I make an ongoing effort when I am making my plans for the week to be sure I am leaving rest days where he and I can hang out. I never ever stop thanking him. I think appreciation is huge. He never has driven me somewhere and not had me say thanks for being my driver. I write him little cards now and then. I also do not lose sight of what I deserve (to not be treated like a burden) and what I bring to the table. Just because I am sick doesn’t mean I am useless as a partner.
      Sometimes if I am having a hard time staying positive, I ask my husband if he will remind me the ways I am strong, or the ways I am good at being a wife. I don’t do it often, but when I do, it definitely boosts me up. Never forget that it isn’t fair to be angry at someone for not offering the right type of encouragement, or the right words at the right time, if you don’t ask. Yes, it is nice when he just knows, but he isn’t psychic!
      So, I guess my advice would be to talk about it. Try and set the tone for the talk by letting your partner know you want to talk about feeling like a burden, and it isn’t based on any particular actions, it is more because of your own insecurities (if this is true). Ask what your partner has observed. Sometimes my husband notices things that I don’t, and we can come up with ideas from that. If there are things your partner could change to help you feel more secure, talk about them and explain why you feel how you feel. Hopefully they can lead to a non-defensive type conversation. It is from talking with him that I learned who my husband chooses for his wife is his business, not mine!

      Another piece of advice I have is to see a therapist. Being sick is stressful, and having a therapist to talk things out with can really help provide some clarity!

      Also, check out my Mom’s comment. 🙂

      Well, that got longer than my actual blog post!

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      • Thank you for taking the time to write back to me. I’ll try and keep all of this in mind. I guess it is a work in progress.

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  4. Posts like these rip my heart right out of my chest. I so wish life was easier for you or ithat you could just somehow get a break once in a while. Kind of like a week off to be able to do normal things and feel good. I’m so proud of the both of you and the way you work hard to make your life together work. To the other commenters who worry about not bringing enough to the relationship – you are bringing yourself, a wonderful human being who has an illness. You are not your illness. Don’t let it define you. Love you guys.

    Liked by 1 person

    • Aww, I love you! You and Dad have such an awesome marriage and are great role models for us. Also, it helps having a Mom like you I can call up when I am having a rough time. You always know what to say. 🙂

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  5. I love this post! I had my husband read it because I tell him all the time how thankful I am to have him but you have such a wonderful way with words- and so does your Mom 😊 Thank you for writing!

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  6. Thank you for your great posts! Perhaps you’ve already covered this in another post, but do you know why (like what specific physical process) you feel hung over the next day? I may or may not have a mild case of POTS in addition to a bunch of other health problems, which mainly have one poorly understood cause. I have been disabled for about 12 years because of this, and I definitely also have this feeling of being hung over when I do too much. I’m trying to figure out what the exact mechanism is for this, so that I can try to figure out how to fix it. Just as an aside for those who are feeling like they would just be an unpleasant burden for a partner, I would like to say that my husband and I are very happy, even though there are times when I can’t speak, can’t move, or can’t cope with anything. My brother in law is married to a wonderful, feisty woman who is very very ill. Just like with my husband, he went into the relationship knowing what he would be getting. I believe they are happy. I think, as people with chronic illnesses, we tend to undervalue what we do have to offer to others. We aren’t just an illness. We have personalities, feelings, and emotions. Sometimes, knowing that someone loves you really makes a huge difference, even if that someone can’t leave the house very often.

    Liked by 1 person

    • I’m not sure, but I know the term for it is post exertion malaise.

      The exhaustion sort of makes sense, in my opinion. Me doing virtually any activity requires more energy than a healthy person doing the same activity. Also, afterwards my conditions are likely to flare up, which requires additional energy.

      I have found d-ribose to be somewhat helpful – it helps on a cellular level with energy production. If you search d-ribose PubMed, you’ll find articles researching its benefit in several conditions.

      A Google search will turn up a lot of pseudoscience, but if you weed through it, there’s good information. It’s been awhile since I’ve read on it, but if I recall, d-ribose helps with ATP production. ATP is the fuel for our cells, and mitochondria recycle ATP. One school of thought is in certain chronic illnesses, the body doesn’t recycle it fast enough. I’m unsure if this is because of a higher energy requirement or because of poor mitochondrial production, or a combination of both.

      Good luck in your quest to figure out your body, and I’m happy to hear you have a supportive partner by your side!

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