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When to disclose an Invisible #Disability in a #relationship?


The more extreme physical chronic illnesses can make dating seem unrealistic or especially difficult, causing people like Pierce to think, “don’t even tempt me.”
One major issue chronically ill people face in dating is disclosure. The question of when to share the illness with a prospective partner fills online forums, videos, articles, blogs, conferences, and discussions. Sharing too soon may scare the person off and sharing too late may lead to a lack of trust. Love in the Time of Chronic Illnes
 If I were single and you asked me now. No. I would say no. Because I am a hermit. I have no energy and am in too much pain. I would feel I have nothing to offer someone. Hell, there are times the guilt consumes me of what I think I have taken from my common-law spouse. Yet I have had conversations with him about it and he doesn't see it that way. Maybe we have more to offer than just our health. Maybe we are more important than that. Maybe we should realize that many people develop chronic illnesses in their lifetimes and their spouses don't just ditch them. I did not break up with my common-law spouse when he developed gastroparesis or cancer. The first scares me, the second terrified me... but the suffering of our loved ones in many ways is harder than our own suffering. Chronic illness is a strain on relationships in many ways, but it isn't the defining characteristic about them.

When I met my common-law partner the only health condition I had was hypermobility syndrome and I really didn't know at the time that was anything other than 'really flexible with a side of pain'. But I did know that I had a lot of other mystery symptoms that didn't add up and had been seeing doctors since I was little. I had stopped all that when I went to university, although the symptoms got worse. I adapted and continued on. I met him and disclosed pretty much right away because part of my 'adapting and moving on' was moderating my social activities. I was in university after all. I had taken a year off to help develop ways to cope with the worsening of symptoms to an undiagnosed condition but when I returned I had every intention of achieving honors (Which I did. Yay me). Which meant not working while in school and not too many social activities either. But people at that age... lots of things to do. Always getting invited places, constantly. My roommate at the time was rather protective of me and would insist to others that I was 'studying' and I think she would have fought other more 'partying' friends off with a stick if she had to, because she got that I couldn't do both. And I had this other friend at the time who persistently wanted me to go out on school days or every weekend. Even though she knew I wasn't up for it. So I had to be open about the fact that I had issues with insomnia, fatigue and pain. And it was very shortly after I was diagnosed with fibromyalgia and then migraines.

I honestly had not been looking for a relationship. Felt I could not offer enough time and energy to someone. Felt I rather had failed at the last one. But when the relationship just happened rather spontaneously I did mention my health issues... like I would to anyone, sort of in a casual way. That completely undermined the seriousness of the symptoms because I always did that. Still do. Stoic is my middle freaking name. But also because at that age and because I didn't have a diagnosis it was sort of embarrassing. Like a weakness I could not explain. (Yeah I have this pain all over for no particular reason. And a bunch of random symptoms with no explanation. But, no, I'm not a hypochondriac.) So I believe I went with my chronic insomnia and hypermobility syndrome explanation... along with a vague 'have had a lot of tests for other things but have not yet found anything'. Yet I had to mention it because I Could Not keep the pace of other people and that also meant I could not, I expected, keep a normal dating pace either. I didn't want to seem like I was brushing him off. It worked out this way. We did go out every second Friday and had some good times. But we also would stay in and play cards, him, me and my roommates and I remember those times fondly. We taught ourselves card games from a book I had. One of the ones we played most often was Canasta. And this is low energy use for me, but with a group of people was great fun.  Seriously I remember those early days of our relationship quite fondly. I did awesome in school. We had some real awesome times. And were in loooooove.

He didn't think my health condition when it wasn't defined or when it was was that important. He didn't think my limitations were that big of a deal. My illness never defined our relationship. I have a way of laughing about my health nuances and maybe that made it a bit easier. It was never seen as something that serious. To this day he finds endless amusement in my complete lack of balance, but always, always holds my hand to prevent me from 'spraining an ankle' or 'falling down a slight incline'. After knowing him maybe a few months I had in fact severely spraining my ankle running up stairs, and then my back going down the same stairs not too long after. They were steep stairs. He also has a lot of empathy. He had problems with me working most of my summer jobs, which were to be honest all jobs I should not have been working with FM (all learning experiences at what jobs Not to work). And he saw the impact they had on me. And for one a doctor insisted I not continue, although was rather moot since the summer was over. He never doubted my pain or symptoms. But never had a problem dating someone with this health problem either. It was not something that could be treated (or there was, but all my doctors were douchebags and didn't treat it. I was too young you see) so I did the best I could to cope. He did the best he could to help. Always cooked for me. Always did the shopping for me. He was a real sweetheart. I think he cooked because I sucked at it, but still, sweet.

Chronic illness is no doubt a deal-breaker for many people. 
On DateHookup.com, the question of whether people would date someone with a chronic illness has come up more than one time in the forums. Some would if they really liked the person. Some would if the disease or illness wasn’t contagious. Some have and realized it was too much for them and won’t again. And then there are people like the person in the forum who wrote, “No, no, and no!!” and explained that she doesn’t want anyone to interfere with her active life.
Freelance writer Sascha Rothchild, in an article on Match.com, considered the question of whether she’d date a chronically ill person. She wrote, “Was I really willing to step into a relationship with someone with health issues when love is hard enough healthy?” In her case, she was, but clearly not everyone is. Or, if they are willing to take the leap, find it too difficult later. There is a statistic—“75 percent of marriages dealing with a chronic illness end in divorce”—that floats around forums and sites like About.com and Focus on the Family, but I was unable to find its origin.
Some people just don’t want to end up caregivers or to mix “that world and this world,” as the girlfriend put it in the film “50/50”—starring Joseph Gordon Levitt as a cancer patient. Others nip the idea in the bud, since they can’t imagine losing someone they love to a disease (even though 7 out of 10 deaths in the United States are from disease according to a report published by the Centers for Disease Control and Prevention.)
I think maybe it was easier to have begun a relationship so early with someone in the early part of my diagnosis. While I may have had that undiagnosed portion for many years, he was there for the diagnosis right at the get-go right in the beginning of our relationship. But it gave him an immediate understanding of what I had. He was there for the appointment and I explained it to him. I in fact already knew all about FM because it had been long suspected I had it, just not 'proven'. So he had all the information on hand right away. Had he ditched then, it would have been early and not bothered me. It takes me quite some time to become attached. Not a love at first sight type of personality type. However, my health did decline over the years with the onset of the chronic migraines. And that brings on a whole new level of pain and disability. It is true that can break a relationship. I can see how that might have added a strain he could not have handled as it became very hard for me to socialize and he still wanted to at that age. So that was a difficult time. We grew a bit apart there for a bit. He had to decide whether it was worth it. I have felt immense guilt about the cost there has been to him. Chronic illness affects everyone around us. It is just the way it is. He was willing to take on a lot for me. When I was working I was not capable of much other than working. He did all the shopping and cooking as a result. And with no complaints at all. And I was very thankful of that. But that was extra energy on top of his workday as well. Not exactly evenly distributed workload there. And a lot of stress and worry as well. He didn't want me to work but I continued because of student loans and bills. I should not have. I realize that, but I did. But all of this can turn to resentment and arguments and break a relationship. And we can feel like it should have been broken because we are so guilty we are ill. Not every year of our relationship was easy going for sure. But we have gone on for 16 years now so it is a good run so far anyway. I think you have to work through each issue that comes up with you as a couple and find the compromises you can make that work I guess. Most than one issue can arise, but if they are not dealt with both parties can feel wounded on these health related issues.

So maybe it is a deal-breaker for some in the beginning of a relationship but for me I think I was lucky to have it happen the way it did. For others I think they might be better to become ill when the bonds of love are strong. You can never know. So maybe you would not choose to be with someone with a chronic illness because of some misconception about it... but illness comes to us all and maybe you will choose to stay with a loved one when they become ill. Love is not infatuation. It is full of complex feelings and bonds that I doubt people fully comprehend. But I would not just leave someone I love due to illness. When my spouse told me he had cancer me stomach felt like it fell to the ground. I just shook with worry and fear and anxiety. No way in hell did I have one foot out the door. I asked a hundred questions and then began to Google and then had more anxiety. But I was There.

These are often the objections the chronically ill face from people who aren’t sick. Karen Swindells, 27, who has epilepsy, says a guy once dumped her right after she had a major brain surgery intended to reduce her seizures.
“He felt like nothing positive was going on in my life at that time,” said Swindells, who works at a college bookstore and is now married. “He couldn’t handle it. It was too much. Too depressing.”
And being There for someone with a chronic illness isn't an easy thing to do sometimes either. I have FM and I have chronic daily migraines. Those two together when I was working nearly killed me, literally because I decided that life really was not worth living. As I imagine many people with that kind of pain think about or contemplate or act on. However that had a profound impact on my spouse. He knew I had trouble with work obviously but he did not know how suicidal ideation comes into play with acute pain and sleep deprivation, expcially with those damn status migraines. Nor did he ever think I would contemplate that or act on it. I think it hurt him a great deal that I never said anything and that I thought of leaving him that way. It hurt me a great deal After to realize the impact I had. But pain, distorts a lot of that, you just want pain to end. So I had to explain a lot about the nature of acute pain when it lasts a little too long without any relief. And that is why he is so adamant I never return to work. I don't know if that is feasible however I do agree with his declaration I never return to my previous employer. However, depression, anxiety and mental illness are very comorbid with chronic pain. Hard to understand in themselves. Poorly understood. And while our loved ones want to help they feel helpless. They feel as helpless as they are with the pain itself. We have to understand that that feeling of helplessness people feel... people react differently to it. Including not talking about, which can make us feel isolated. Or anger and frustration, making us feel misunderstood.

If I were to date again, which as I said, not likely... Sure I would still disclose right away, due to the plain damn obviousness of it, but the fact is I would feel like there is nothing there to offer. My spouse knows me. I am who i am. I have things to offer him and he knows my limits. I would instead be a weird eccentric recluse. Or a cat woman. Something like that. And likely okay with it. I've never had an issue with being alone.

How do you disclose? That is easy enough. Slip it into conversation. I cannot have wine it is a migraine trigger. Or 'wow it is sparkly out here'. Or 'Yeah I totally do wear my sunglasses at night. I am that cool or photophobic or both.'



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