During our Vegas elopement, my wrists hurt constantly and my hand cramped up a lot, but I pushed through the pain, and managed to have an okay time. When we got back, however, things got worse. After seeing several specialists who couldn’t determine why my hands were cramping up, stiffening, and in so much pain, I finally heard this…
“You have Avascular Osteonecrosis in the wrist, also known as Kienbock’s Disease. It’s extremely rare, incurable and beyond my expertise. I’m sending you to a very experienced surgeon who specializes in hand micro-surgery right away.”
I was diseased, it was very rare, not much is known about it, and it is incurable.
My disease causes bones in the hand/wrist to die spontaneously and crumble — causing arthritis and other painful problems. If other doctors had recognized it in an earlier stage, there are operations that could’ve been done to try to slow down the progression of the disease, but it was finally diagnosed in stage 3B. And my only viable option was total fusion: broken bones, bone grafting, metal hardware, the works.
By the time I was diagnosed, just a month or so after the wedding, I couldn’t even get dressed by myself anymore. My husband had to help me eat, by putting the utensils in my hands because I couldn’t grasp them. It was awful. I had to quit my career as a dog groomer, which hurt emotionally because I’d spent my whole adult life working to get to the top of my field.
Melinda and Paul talk marital teamwork, solo time, and commuting craziness in the Lone Star State
Since we got married we've both graduated -- we're Doctors now! We've almost moved a ton. Paul moved from Chicago to a town north of... Read more
I had my big operation immediately, and my husband was there for me every step of the way… He made my meals, looked after our dogs, provided for us financially, and was there for me emotionally, too. It was such a terrible, whirlwind time.
I became a disabled housewife so quickly after we married, that I’d felt as if I’d tricked him.
Going through all that as newlyweds was so stressful.
I became a disabled housewife, without any warning, so quickly after we married that I’d felt as if I’d tricked him, or pulled the ol’ bait-and-switch.
A lesser man would’ve taken the opportunity to say, “I didn’t sign up for a crippled wife; I’m out,” but he stuck by me.
After my operation, which had a year-long healing time, I immediately began to feel better. My husband says he noticed a huge improvement in my mood and attitude within a week of the fusion. Being in chronic pain had made me depressed, and even the pain of healing from surgery was a relief in comparison. Gradually, movement in my fingers came back, and the pain went away more and more every week. I’d made it.
My husband has a great job, that can easily, comfortably support both of us and our rescue dogs. He reassures me that he loves me wholeheartedly, and that he’d have wanted to marry me even if we’d known about the disease before the wedding. He said it wouldn’t have changed a thing, and that he loves our life together. But I still deal with feelings of guilt for not being able to financially contribute to our partnership.
It’s been a year since the operation. Now that I’m pain-free and have full finger movement back, I can do just about everything normally and by myself (although my dog grooming days are over forever). I feel so lucky to have found a partner who’s proven that he truly is willing to stand by my side no matter what life throws at us.
A diagnosis like that would’ve easily broken up many couples. But getting diagnosed with this rare incurable disease brought us even closer together, and just reaffirmed that we made the right decision to be together.
I never, ever thought something like this would happen to me, but it did. I now believe that life isn’t about what happens to us; it’s about how we choose to deal with it, and about who stands by our side and helps us heal and grow.
Anyone else dealt with a surprise disability after a wedding or big relationship event? How did you guys handle it?
My husband and I have had a similar situation. I’m disabled and it is very painful for me, emotionally and physically but my husband loves me!!! We are a lucky women!
Not after a big event, no. I have Ankylosing Spondylitis, which is a painful autoimmune disease. I’d found out about it about six months before we met, and even after he knew, he didn’t care. The hardest part for me has been the slow decline. I’m nowhere near as active as I once was, like when we first met. I’ve applied for disability. And he’s still here. It’s hard on him, I know that. But any time I ask, he says that he wouldn’t leave me for anything. And he’s proven that through every hardship we’ve been through the last six and a half years, even moving home to live with my mom and brother in a tiny town that he loathes.
It’s hard to not work, or help much with chores, and to feel pretty useless. But he’s not here because I was useful. He’s here because he loves me. And I love him. And really, that’s what’s important.
Mine was after but I can totally relate. Not working kills me.
I have a bipolar disorder. I was well medicated through the entire course of our courtship and into our marriage. A few months ago, we started talking about having kids and I had to shift medications to something that would be safe for carrying. He’d never seen me through a medication shift before – mood swings, weight shifts, sleep cycle off, imagined slights, rage spells…it was pretty much the worst.
He stuck with me, no question. I continued to increase my medication. At the same time, I started seeing a therapist who specializes in bipolar behavior and we together started seeing a couples therapist. It’s taken a few months, but we’ve finally come to a place where we understand each other and where we have the coping mechanisms to work with my disorder.
I know very much how you feel! My spouse had at least some amount of “warning” — my health has always been poor — but then not quite 3 years in, I developed Meniere’s Disease, which causes almost constant dizziness (as well as fairly severe hearing loss). I was about a half step up from bedbound; I could walk to my recliner and the bathroom, but only because there was an unbroken ‘path’ of things to hold on to so I didn’t lose my balance, and that was it. Totally dependent on my spouse to help me dress, shower, get food or drinks, etc. Luckily after a year of misery we managed to find a combination of meds that has it under control, but I have the stamina of a day-old kitten after a year of barely moving, and still get dizzy spells unpredictably.
I was diagnosed with fibromyalgia during my pregnancy. I had had it before, but it was never bad enough to cause problems on a daily basis. Now it does. He has a hard time with it sometimes, but he does his best to be understanding.
I feel similar to this because of my crazy 24/7 pseudo-migraine headaches. There are days when being awake and upright hurts and there’s no way in hell that I can make dinner. My fiance has stuck by me through all of it. I feel like I’m not a good fiancee sometimes because of my issue. I also am unable to contribute equally to our house bills because of my expenses and how much money I make. So, I can definitely relate to your situation. I’m glad you’re feeling better and I always enjoy reading your posts. Thanks for sharing!
~Ang
I’m in the opposite situation – I’m the healthy one. A month after our wedding, my husband started getting sick. It’s been over a year now and he’s constantly in a black mood (because he feels so bad) and doctors don’t know what’s wrong with him. It has caused so much stress; so much for a fun year of newlyweds! Instead I’m tiptoeing around him and have now given up most of our shared activities, everything we did together, because he feels bad and it wasn’t fun for either of us.
It is NOT what I signed up for. He’s not the guy I married. And you know, that sucks, because I take my vows seriously.
Will he get better? I hope so. But for now I’m in survival mode and trying to both be supportive AND focus on my own activities away from him because that’s the only way I’m retaining my sanity. I have to carve out the part of me that was ‘single girl’ and focus on her because married girl is not very happy, and the ‘us’ that was dating-engaged girl+boy doesn’t exist any more.
And I know it’s not his fault. I still love him. It just sucks.
Keep pushing for a diagnosis! After 16 years of (undiagnosed) chronic fatigue, lingering near-constant illness, and domino-effect side symptoms, I got into some pretty black moods, myself. But when I was eventually diagnosed, and they found a treatment that started to work, it made a HUGE difference. Even when I’m not doing well, it’s a relief to be reassured that it’s not all in your head, you’re not morally weak, you’re not “just being dramatic/lazy/crazy”, etc. Hope has that stunning effect.
So glad your surgery went well and you’re feeling better! That’s awesome.
We got engaged in August of 2014 and less than a month later I thought I had a UTI. Got antibiotics like every other time I’d had one but they didn’t work. Nothing worked. I was constantly uncomfortable, constantly felt like I had to pee, and was really miserable. I was bounced from doctor to doctor for months until in late November I was preliminarily diagnosed with Interstitial Cystitis since everything else had been rule out. This is a condition in which there are microscopic holes in my bladder lining which allow urine to leak out and touch my bladder wall causing spasms and other UTI like symptoms. I was placed on a low acid diet and a month later my symptoms had lessened by about 50%. I was then placed on a low level overactive bladder medication which helped with more of the symptoms. Today I’m now nearly completely symptom free most days. But sometimes I still get flare ups and they’re awful. This diagnosis came on top of me already having frequent migraines. My husband is so patient and wonderful with both conditions and is always there to do whatever I need done. I told him once that I’d understand if he was sick of dealing with my conditions and didn’t want to get married and he told me “I’m not marrying your head or your bladder. I’m marrying you.”
My husband spent much of his childhood in and out of the hospital for brain surgeries due to recurring brain tumors. He had his 5th brain surgery and some radiation at 17, and then 18 came and went, 20, 25, 30, all clear! We married on July 4th, 2014. In May of 2015 after watching the series finale of Justified (I remember every detail as if it happened yesterday) he looked at me and told me his tumor was back, and that he would need another surgery. 2wks later we were at Johns Hopkins (the only hospital ever willing to do his surgeries. Shout out to Ben Carson!! He had a different surgeon this time of course) for my sweet husbands surgery. The road to recovery has been very long, and at times very slow. He has once again showed his strength and is mostly back to the man I married. I wouldn’t consider him to have any deficits, though his memory and speech can be a little off at times, I’ll take it!!! He has his next MRI scheduled for July 1st. We leave that day to head to the beach and forget about the world. No matter the results, I’ll travel that road with him.
I’ve got Chronic Active Epstein Barr Virus, which gets worse the longer it goes on. When I met my fiance, I didn’t even have a diagnosis yet (but have had it, on a downward spiral, since 1999). Two years ago it got bad, then last October it got so bad that I was facing permanent disability and a black hole of depression. My fiance’s industry pays crap, so he couldn’t financially support us. Plus, we’d just purchase our first home. There were days I could barely get out of bed, and knowing I wasn’t the same woman I’d been when we met, the guilt was killing me (one fun side effect is totally losing your sex drive). But like you, I’ve hitched my wagon to an amazingly supportive, patient man. And it’s not just him stepping up when I can’t function normally, or patiently listening to my diatribe about medicine, or making the tools I need to do certain things at home…it’s his paying attention enough to see when I’m too tired to cook and taking care of things quietly so he doesn’t call attention to my infirmity, or his never once making me feel bad for turning down sex, or his explaining of my condition to his friends without even a hint of disbelief or frustration in his voice. Supportive partners are amazing, and I’m glad that so many of us have them (or are them- go you!), even though I’m sad so many of us are sick.
Been there. Still there. Different complex of diseases but the same feelings. Still deal with guilt 31 years later–but never provoked by him.
I’m happy to hear that your surgery has given you relief and mobility! All progress is still progress. Remember to celebrate the small things and stay positive.
I had sciatica off and on over about 20 years before meeting my husband (I was 47, he was 44 when we met). I had been feeling really good, no issues until 3 weeks after we got engaged. We had a fun date day on Saturday but I woke up Sunday in agony, unable to get out of bed. The diagnosis this time was herniated disc. I would end up having a microdiscectomy two months later. It reherniated and I had a 2nd microdiscectomy 3 months after the first.
I lost my job (that paid twice what his does) and was left with nerve damage. The chronic nerve pain was awful. I was no longer able to do things we used to to, like going to concerts, even going to a movie. He never wavered in his devotion to me. We couldn’t really plan a wedding since my health was always changing & unpredictable. We ended up putting together a small wedding in just 3 weeks. It was beautiful & perfect.
Last Friday, 8 months into our marriage, I woke up one morning in worse pain than I’ve ever had. He called an ambulance because I couldn’t walk from the bed to the bedroom door, even with a walker. I spent 6 days in the hospital on IV & oral pain meds, anti-inflammatory meds and steroids. I received an epidural steroid injection and was well enough to walk from bed to the bathroom with the assistance of a walker so they sent me home. Plans are to use drugs, therapy and conservative treatments, reserving surgery as a last resort. If it comes to it, surgery will have to be a fusion procedure.
I have a disability hearing in a month. It’s been over two years of struggling emotionally, physically and financially but we’re in it together. I feel the guilt but he’s my rock!
Ive always had issues, but it got way worse after we got married when I had some food poisoning on out honeymoon, and after our first ‘surprise’ kid things got way worse. Luckily I got a diagnoses and we deal with it all on a daily basis. Some days I’m good, some days I can’t put my shoes on or walk. We’ve amazingly adapted our lifestyle, and the way we’ve adapted it all to make it easier for me, I sometimes forget I’ve had a disability.
I do turn to hubby and ask him about it.. I still feel guilty.. And I feel guilty for our kids now having to put up with a ‘not so normal mum’.. But I have to tell myself that that’s all they know, and they love me just the same. My disability will get worse, but I love that they’re my support
I think that this post came at a great time for me. I met my wonderful husband online. He bared all of his mental health challenges early on. However, I was in a great place with a great job, feeling as healthy as I ever have. Unfortunately, after moving across the world and losing my support systems, I’ve become 100% a different person. I’m depressed and currently battling Chronic Fatigue and pain. My doctors have pretty much given up on finding a diagnosis, as every test has come back as normal. I am still able to work, but my hours have been reduced so much. When I come home, I battle between rest and doing the minimal amount of housework. I choose between spending quality time with my husband and friends or keeping the house clean. This choice is never an easy one as my husband feels the pressure no matter what.
I developed chronic fatigue syndrome and chronic pain 6 months after my fiancé and I started going out seriously, and developed a constantly worsening anxiety disorder soon after. At the same time my depression kicked back up badly. So far it’s been five years where I couldn’t do anything, couldn’t work, couldn’t do housework, couldn’t study for most of it, and he’s still here. What I want to know is, how do you all spend your time? I’m at a loss of what I can do with my days and feel completely empty and unfulfilled
My husband and I had been living together for 4 years before marriage, and that entire time I had severe “allergies”. About 6 months before our wedding my vision went black and I had to go in for an emergency spinal tap to drain off fluid that had been crushing my ocular nerves and brain. I walked away from that with a diagnosis of Psudotumor Cerebri (or also called Idiopathic Intercranial Hypertension). We spent the next year and a half with me in and out of the hospital chasing neurologists, ophthalmologists, and other various specialists with the constant fear of going completely blind or brain hemorrhaging. I could barely work or function. Despite all of that he still decided to stay with me and get married. Now we have my health mostly managed, I have up days and down days, but for the most part I’m here. 🙂 This may come back, but I’m so happy and glad we stuck it through!
My husband and I were just recently married on June 25th after being together for only almost 3 years (first as friends, then as lovers, living together, and finally marriage). My issue is that I’ve had a lot of health issues from a very, very young age. I have been clinically dead and come back four times from all of it. From severe asthma, heart issues, arthritis, inflammatory disease in my eyes, stomach, intestines (of which I only have the small intestine now) and cancer…. I felt it was all on me as my personal responsibility to warn him of all of this. I told him about everything when we were friends, and long before we lived together, I asked him if he was absolutely sure he wanted to take me on because it wasn’t baggage that just anyone could handle (point of reference: a LOT of failed relationships). He has stuck around and goes to work every single night to allow me to remain at home while I work with an attorney to get disability benefits as well as work on my art as best I can. I could not be happier to have found such a great man, and it’s so amazing to see others who find that, too! So glad things are getting better for you!
Hi Thanks for sharing your story, I think it’s important that stories about people in relationships are shared when a partner has a disability. On a different note my husband really dislikes it when people refer to how good a husband he is (I have a physical disability and now use a wheelchair) he feels it can take away what I contribute to the relationship. That’s not to say that he hasn’t been so supportive with the fast changes in my health in our seven year relationship but I think he tires as being up as the ‘hero’ rather than just being a regular old couple where one person happens to have a physical disability. In some ways my disability has pushed us in terms of cramming in a lot of overseas travel while I was up to it Don’t get me wrong there has been alot of sadness and loss but a whole lot of fun and adventures as well. I’m currently still working part time but aiming for an ‘ early retirement’ at age 40 in three years time, after our house has been modified to being wheelchair accessible, it’s a big job!
I get this, so much. I was diagnosed with ovarian cancer a few years ago. My health has its ups and downs (during treatment cycles vs times when I get a break, etc), but it’s pretty manageable, for the most part. The thing that’s been really hard for me is that I got involved with my partner right around the time of my diagnosis (which nearly caused me to flee the relationship before it got a chance to get going!), and my treatments have taken a sort of accumulative toll on me as time goes on; the more committed our relationship has grown, so too has my borderline-disability. Between treatment scheduling and the havoc it wreaks with my energy and well-being, I haven’t been able to work full-time in the last two years, which is also about how long we’ve been living together. It’s been devastating for me to try to come to terms with being a woman even partially dependent on her man for financial survival.
Personality-wise, I’m by far the more driven (and workaholic-leaning) of the two of us and I would much rather be the breadwinner, even with all its attendant pressures, than be the dependent. At the very least, I always pictured a shared partnership, and preferably one where we both earned enough to cover all our bills solo if need be (so we could save a LOT of money over the years). Besides feeling terrible about the earning pressure on him with my loss of income, I worry constantly about how tight our finances are all around with my health expenses combined with my making SO much less money than I did before. I don’t think I’ll ever stop hating it or looking/hoping for solutions and healing so that I can regain my abilities to contribute more to our partnership and our future.
That said…I’ve been so grateful for the man I fell for, and in a weird way, for the opportunity this illness provided for me to see the proof in the pudding of his character. Most people go through a lot of their adult lives not really knowing how well their partner would cope “in sickness” as well as in health…I’ve gotten to see how amazing and supportive my guy is pretty much right from the start. It was just never an issue to him. He has a lot of compassion for my angst about not making very much money anymore and my feelings of inadaquecy, but he has never once contributed to those feelings. I love him more for that than I could ever do justice to with mere words.
Exactly one month (to the day) after we were married, I was crushed underneath the tires of a huge delivery truck that ran me down without any warning sounds on a pedestrian sidewalk. I’ve been physically and mentally disabled for four years now. I’ve had half a dozen surgeries and am undergoing a hugely demanding depression and anxiety treatment right now.
I’m so heartened to read your stories, even though I’m sad there are so many. I was grateful to be an Offbeat Bride, and now to find a community in Offbeat Home & Life simply brings tears to my eyes. Thank you ladies! We’ll make progress together!