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Getting Married?


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I'm not sure where to post this exactly..I don't think it belongs in the chit chat forum because it has to do with dysautonomia.

I've been with a guy for over 2 years now. We met online years ago, decided to meet in person about 3 and 1/2 years ago. Things worked out with us and he drove to visit me every month (we lived 8 hours apart) since. In October of last year he found a job in my state, moved an hour away from me and now we see each other all the time. He proposed to me on our 2 year anniversary (November 19th). We don't have a date set or anything like that yet, but we have talked about it now and then since.

Now, here is my problem (?)..I was just diagnosed with POTS in October..I've been dealing with dizziness for a long time, but within the last year it's gotten worse. Almost constant. I know he loves me and cares about me..I guess I'm just nervous about living together and taking such a huge step when I'm used to pretty much spending a lot of my days laying around at home (my parents house) and my mom helping me out with whatever I need, whenever I'm having a bad day (which is a good bit of the time).

Another big (the biggest) concern and why I'm so hesitant is because I don't have a job..It would be impossible for me to work right now, and I have no idea when that will change. He told me I don't have to worry about that..but I always thought before you start a life with someone else, you should be able to take care of yourself..and dealing with POTS has made that quite a struggle for me. He told me that we shouldn't put everything on hold because of my health because I might always have to deal with this, which is true.. I just honestly feel useless and worthless half the time since I can't do a whole lot..and if I was living with him, I feel like I wouldn't be pulling my weight in the relationship since there isn't much I can do.

He's been super understanding and supportive of everything going on with me. He's gone with me to doctor appointments and seen me at my worst in the hospital..I'm not afraid of him changing his mind about me or whatnot anymore, I think it's just a me thing that I need to get over. How does everyone else do it? If you live with someone, or are married..and can't really do a whole lot - how did you become okay with that? I'm always one for telling people they should do what they can do, and not feel bad about it because they're doing their very best..and I truly believe that. I guess I just have a hard time taking my own advice.. :)

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Hi Nikki,

I can relate to your questions. One month after I got engaged to my hubby, we were T-boned in our convertible and I had severe pain for 2 years afterward (and 2 hip surgeries). The following month, I had my first pre-syncopal/POTS episode and began seeing a litany of doctors. He still married me as planned 6 months later. Less than 2 months after our wedding, I had to leave my nursing career because of worsening hip pain. I've actually nearly completely healed from the car accident, but I came down with constant neuropathy pain in June of 2008 (POTS-related). So even though I'm recovered from the accident, POTS is preventing me from doing any type of work right now. I've been disabled since May 18, 2007.

Losing my ability to work was a real grieving process... somedays I was more at peace with it and other days I'd just have to distract myself from guilty thoughts. I also saw a counselor when my POTS got worse in 2008, which helped a bit. My greatest resource has been my mom, who also had to abruptly stop working due to illness. My family has a great work ethic. I put myself through nursing school working 3 jobs and graduated 2nd in my class. I never dreamed it would be taken away after just 7 years. However, I can say that I have more peaceful days now than I did 2 years ago, although I always hope that I can work again.

As to your question about being married and disabled, it sounds like you and your fiance have given much consideration to each others' character. He sounds like he is willing to take you as you are, limitations and all. Have you had discussions about expectations regarding housework, cooking, and how your illness might impact sex? My husband actually takes pride in being able to financially provide for both of us. Maybe your guy will feel like this too. I find that if I can rest all day while he's at work, I usually am able to cook some supper and spend time with him in the evenings. It's the days he's home all day that he gets 'cabin fever' when he realizes how much time I lie around every day.

We each have to make allowances for the other person. He realizes when I'm too sick to do much and doesn't expect anything of me during those times. And I have to sometimes push my body when I'm not feeling great because we need to spend time together. He understands my sacrifice during those times and is patient and grateful, and I make sure to appreciate all of his sacrifices regularly. And we try to tell the other person if we're feeling unappreciated or misunderstood. It's a learning process, but the most important thing is to be committed to each other, be flexible, and always try to give a little more than you get.

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This is an interesting topic!

I think a lot of how you feel has to do with the attitude of your partner. I have had serious/chronic illness with two different Husbands (I'm starting to wonder if my body is allergic to marriage! :)) I got married the first time at 21 to a guy I had been with since I was 14. I fell ill with cancer pretty soon into the marriage, with a relapse a couple of years later. I worked part time through the whole thing. My Husband was NOT supportive. He wouldn't take time off work to take me to the hospital (and that's wouldn't, not couldn't), he would constantly complain about the state of the house and the fact I hadn't done housework. He complained about me working part time, complained about me having no hair, complained about the weight gain during chemo due to the steroids. One night I was in so much pain I cried all night and was eventually kicked out of the bedroom because I was keeping him awake and he had to go to work in the morning. He controlled the finances, I never even knew how much he earned! Anyway, he wasn't a nice person and needless to say, my self esteem took a hit.

A few years down the track and I was divorced after finally working up the nerve to leave. Living by myself, managing my own money, working about 30 hours per week (never have got the stamina back for full time work), even learning to order for myself at restaurants! lol. I even bought a house! I swore I would never again be in a position to let someone do that to me again.

Well, the best laid plans and all that! lol.

On a holiday in the US (I live in Australia) I met my current Husband. A bit of whirlwind 5 weeks later we were engaged, and after 2 years of long distance relationship he moved out here and we were married in October 2006.

Then during 2008 I started having health issues and was finally diagnosed with Dysautonomia.

The difference between my current Husband and my ex could not be more pronounced. My Husband is wonderfully supportive, loving, caring, compassionate. There's nothing he wouldn't do for me. He never makes me feel bad about not being able to do as much as I would like around the house, never makes me feel bad about myself. He builds me up and boosts my confidence. I've gone from working 25-30 hours per week to one day, to not at all. And he's fine with that. My Husband is like thankful's, he's proud of the fact that he can 'provide for me' during difficult times. I think it helps him feel less helpless, which I know he often does in the face of my illness.

But like you, I'm the one with the issues about it. It's probably the thing we talk about the most. My feelings of lack of independence. Which are definitely made worse by things like not being able to drive, work etc. All you can do is work on it together, be open and honest with each other about your feelings. Negative and positive feelings. Neither of you should be afraid of telling the other when you are feeling down, or frustrated etc.

I think it's definitely worth working on, your guy sounds like a 'Keeper' :)

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