Hiding chronic illness from people
July 17, 2013 7:11 AM   Subscribe

I have been living with chronic illness for around 10 years now. I am only able to work part time, but I look completely healthy on the outside. Nobody apart from my family knows about it. I hide it for many reasons but unfortunately this makes it unable to get really close to anyone. What to do?

To clarify it's Chronic Fatigue Syndrome (CFS). It affects me by having significantly less energy than a healthy person would so I need a lot of rest. If I rest and don't push myself into utter exhaustion, I am relatively OK. This means only working 3 days per week. I sometimes get other symptoms like feeling nauseated out of the blue or light-headed/weak. If I lie down for a while, I feel better. My coping strategy is to push through the symptoms as much as I can. I am not a complainer by nature.

Many years ago, I was open about it. People didn't understand and two things happened: either they would accuse me of it being all in my head and being lazy (I am far from it - in fact they have no idea how tough it is to push trough feeling unwell on almost daily basis just to have some kind of life). Or they would feel weird around me and avoid me. CFS has a crappy name and is still very misunderstood illness, with lots of outdated info online that people can read and take as a gospel. So what usually happened is that I constantly had to defend myself against "lazy" and "crazy" claims.

So I eventually stopped telling people and started hiding my symptoms. I have my family as a support network and my new friends have no idea that there is anything wrong with me. I have noticed that this makes life easier but it also feels like this big secret/burden that I am carrying around. If I out with friends and feel unwell, I make up an excuse to leave (that's not health related).

It gets even more problematic with dating. I had 2 serious relationships. First ex thought it was all in my head and looked up online articles that confirm that. CFS is classified by CDC as a physical illness (a neurological disorder) and all latest research supports that. However, there are still 1990s articles floating around. Like that certain personality type gets CFS more frequently or similar and my ex would latch to that as proof that CFS doesn't exist. I am pretty sure that there are studies that say that certain personality types get cancer too. My ex didn't listen and for months I tried to make him understand. I even took him to my doctor's appointments and had my doctor explain it to him. Ex just came back with saying that my doctor seems dumb. Every time I felt unwell, he told me to ignore it and push myself. Eventually I got a lot sicker and he left me, saying that he doesn't want to deal with any of it.

In my second LTR, having that bad experience - I decided to hide it. I even moved in with the guy without telling him that I am chronically ill. I went as far as to secretly take naps when he is at work, just to have enough energy to pretend that I am well when he gets home. I would also have normal weekends with him and this would take so much out of me, that I slept for all of Monday and Tuesday while he was at work and thought I was out and about. I kept this up for many months. Sadly, it made me extremely unhappy and frustrated. I picked fights with him for no reason, I was always grumpy because I was exhausted. That alone did too much damage to the relationship. Eventually I told him the truth. We broke up soon after, which to be fair to him was not just my illness, but how poorly I handled things by hiding it as well. He quickly moved on and started dating someone else.

I have now been single for 2 years. To be honest, in many ways I am so much happier this way. I can rest when I need to and my health has improved as a result. I took up some hobbies that I can handle and am doing great at my job. I did some casual dating but didn't really want to get involved deeper.

I do get lonely and I wish I could meet a man that would be able to understand me. I want to be able to tell him that I have CFS, for him not to attack me over it. To be able to tell him when I feel unwell and for him to be OK with me taking a nap or sitting down for a bit when I get nauseated. Just little things. I am independent and don't need a lot of emotional support.

I am at loss how to handle this. Do I tell men early on? Won't it scare them away?

I just know that I can't be in another relationship where I need to take naps in secret or pretend to be healthy when I am not. I feel like I have a lot to offer to someone. I am attractive, smart, loving and kind. I have a lot of inner strength and despite my physical limitations, I have managed to get postgrad education, good career and travel the world.

If anyone has any other thoughts on my situation, please let me know.
posted by anonymous to Human Relations (20 answers total) 6 users marked this as a favorite
I am at loss how to handle this. Do I tell men early on? Won't it scare them away

There will be some guys who are scared off by this. Those are the guys you don't want to be dating anyway.

You dated one guy who was an asshole about this; that doesn't mean you can't date, it just means he was an asshole.
posted by Tomorrowful at 7:18 AM on July 17, 2013 [12 favorites]

My ex didn't listen and for months I tried to make him understand.

Whether it's CFS or migraines or depression or not liking Indian food, if someone doesn't listen to you, move on.

Do I tell men early on? Won't it scare them away?

Anything terminal or contagious you should put right up front. For chronic but not terminal/contagious, I'd tell someone as soon as you see potential for a real relationship. If it scares them away, better to know sooner than later.

Remember, you're not looking for men/relationships, you're looking for one man/one relationship. Might as well make sure that man has your back.
posted by headnsouth at 7:19 AM on July 17, 2013 [16 favorites]

Be 100% honest. When you date someone you can broach it this way, "I have a chronic illness, I deal with it pretty well, but every now and then it flares up." As you continue to date, you can clue him in on the details. "Boy, I was having a bad day and spent a lot of time asleep."

Your first boyfriend was a jerk, he treated you badly and you are well out of it. Your second boyfriend, you didn't really give him a chance to step up.

This time around, be honest, and see where it goes. If the guy can't deal with it, let him go. You'll find someone who will love and cherish you right where you are.
posted by Ruthless Bunny at 7:20 AM on July 17, 2013 [2 favorites]

Being honest with someone about your illness early allows you to weed out the jerks who want to spend more time dismissing your symptoms than being a supportive partner.
posted by xingcat at 7:21 AM on July 17, 2013

I have chronic fatigue issues myself and I really hear you about all those assholes who don't understand and/or don't want to understand what CFS is like. God is it maddening. And I'd say what you need to do is choose your friends and men you date carefully and avoid the ignoramuses. I mean, I bet you don't want a friend or a boyfriend who makes racist comments and you screen those people out. So this is just another kind of bigotry to screen for.

How do you do that? Well there's nothing wrong with only telling people on a need-to-know basis. But a boyfriend does need to know. So I'd suggest that you tell him fairly early on, not on the first date, but in the first month before either of you are too attached, and just make it a casual, matter-of-fact reference. Don't present it as some big negative — it's simply how things are. It's like being diabetic or some such illness that you have and you live with and that you see as primarily your responsibility to manage, but that will mean the guy needs to make some allowances.

Then see how the guy deals. If he can't handle it, if he's being ignorant or making demands you can't handle and he doesn't respond to you trying to talk to him about it, dump him. You don't want that kind of guy anyway and there are better guys out there for you.
posted by orange swan at 7:24 AM on July 17, 2013 [2 favorites]

So your boyfriend who didn't believe you was a complete and utter asshole. I'm so sorry he did that. I think you will be better off disclosing early in the relationship so that you can run the other way if you meet someone like that. Trying to convince people who don't believe you is not worth it, but hiding it is also not worth it.

I also have a hidden disability and I have struggled with this question of when to disclose. I too have had people end relationships because of it. It's painful, but you don't want to be with someone who can't deal. What I settled on was disclosing when I realized that the relationship is going somewhere and I really like the person, maybe after around a month of dating.

Getting some therapy or support so you can feel better and more confident about this process might be good. Honestly there are many people you could date who are going to find your illness a dealbreaker, it takes a lot to deal with that.
posted by medusa at 7:25 AM on July 17, 2013 [2 favorites]

Your ex handled it poorly. Not every man will.

I think you should tell them when it comes up naturally. The sooner the better, obviously, so that 1) it doesn't seem like you were trying to hide it or that it is some dirty little secret (because it isn't) and 2) to ensure you don't waste time with someone who isn't okay with it. Bring it up casually, matter of factly. Don't be apologetic, just matter of fact. If during a date you get suddently nauseated or exhausted, tell them then. Say, "Sorry [person I am on a date with], I'm suddenly feeling really nauseated. Nothing you've done wrong, I just have Chronic Fatigue and sometimes it hits me out of the blue. I'll be better in a bit, don't worry about it." If you approach it as Not A Big Deal you will increase the likelihood of the other person taking it in stride, I think. If they react poorly or dismissively, move on to someone else.

best of luck!
posted by PuppetMcSockerson at 7:25 AM on July 17, 2013 [1 favorite]

If someone gives you shit about CFS, tell them to google Laura Hillenbrand. She is clearly not lazy since she's published two incredibly successful books while dealing with the condition. Anyone who believes she is making it up is not worth your time.

I think that if you are looking for a relationship, you will have to tell people you are dating fairly early on. If they can't deal with it, then they can't. I have discussed this kind of thing a lot with family members who have autoimmune conditions that make them get tired. Most of them seem to tell people on a need to know basis, i.e. when it is affecting your plans with someone. Which, naturally, comes up pretty quickly when you are dating.

My sister has a career and social life while living with a combination of disorders that cause a lot of fatigue and she is ruthless about marshaling her physical resources. A lot of people are unaware of the amount of time she has to spend resting. But she absolutely does not compromise on that.
posted by BibiRose at 7:27 AM on July 17, 2013 [4 favorites]

The guys you dated who were jerks didn't really like or care about you. People who care about you will understand.

Your CFS has nothing to do with why those guys were assholes. Those guys will go on to be jerks to future partners, too, because there's something wrong with them.

Also, being single is better than being made miserable by someone you're in love with.
posted by discopolo at 7:38 AM on July 17, 2013

Here's how to avoid spending months trying to make someone understand: if they treat you like it's all in your head after you've explained, DTMFA.

Spend your limited energy on someone only if they respect you.
posted by yohko at 7:39 AM on July 17, 2013

I would tell your friends and also tell anyone you are dating (it doesn't need to be first date material - maybe third?).

Your first ex was an ass. He sounds awful. As for your second ex - well, I would probably leave someone too if they hid a chronic illness from me because they didn't trust me enough to tell me about it. But that's in the past; going forward you can tell people, and if they are jerks, find someone else. Most people will believe the current research and will respect you for dealing with something difficult.
posted by insectosaurus at 8:03 AM on July 17, 2013

PuppetMcSockerson's script is a good one. i don't think it's first date material, that's when you talk about pets and jobs and whatnot. but maybe after you've had a few dates and feel like you could move into "bf/gf" territorty, then bring it up. if he scoffs, move on. if he seems interested and asks questions, educate him. if you have to cancel a date because you don't feel well, there are men who will call later to see how you're feeling, not judge you for being "crazy".
posted by misanthropicsarah at 8:11 AM on July 17, 2013

The problem in your first relationship was not that you have CFS, it was that your first boyfriend was a dick. The problem in your second relationship is that you hid something you should never have hidden from someone you were seriously dating, again because your first boyfriend was a dick.
posted by DarlingBri at 8:20 AM on July 17, 2013 [7 favorites]

While this doesn't help with jerks or people who don't believe you, it serves to explain this to those that are actually interested in what it feels like to have severely limited energy: Spoon Theory.
posted by meijusa at 8:37 AM on July 17, 2013 [3 favorites]

At the risk of my answer seeming like a derail, I'd like to suggest, based on my own experience with a largely "invisible" condition, that you see what's available in your geographic area with regard to a support group for people with CFS. As a diabetic, it never occurred to me to hide it from (the many) people who might be innocently ignorant of what it's about (or from jerks like your first boyfriend). But I'm a member of a local chapter of Diabetes Sisters, national group that I know has helped give a lot of people good language and processes for feeling comfortable in sharing information about their condition. There was even a regional conference with one session specifically designed for talking to family, friends, dating partners, etc., about life with diabetes.

Just as someone can't see my blood sugar go up and down and know how I feel, but should respect my medical and personal needs, someone can't see your exhaustion, nausea, etc. Someone who doesn't believe that you have a medical condition the symptoms of which they can't see, or who doesn't respect your needs, isn't worth knowing. (Your boyfriend just didn't like being inconvenienced -- he'd likely have been the same if you'd broken your leg.) I know it's exhausting to have to be in "explainer" mode, but people worth knowing, especially romantic partners, will listen, learn and become your champions. I encourage you to seek guidance from your fellow CFS peeps and gain confidence from the collective experience.
posted by The Wrong Kind of Cheese at 9:11 AM on July 17, 2013

First (((gentle hugs))) to you. Dealing with chronic illness is very difficult at the best of times. Hang in there, you can do this.

I have had CFS and FMS since I was a teenager, though I was not dx'd until age 38. I so understand about being so ill, and in much pain, with everyone, including doctors, telling you nothing is wrong, quit malingering! (I am 55 now and have acquired a long list of other acronymed illnesses along the way).

My first husband was not supportive, refused to help, and for the most part I had to "raise" him as well as our (combined) 6 children. Finally after 16 years I was too ill to stay with him. Literally. But still with no official dx.

Single for about 7 years, I got some good health care, dx, and on to disability. I signed up on a few online dating sites, more as a whim, as well as chatting with a lot of pe ople on varous forums and in game rooms. The first thing I would tell any man who contacted or seemed interested in me was 1) I am chronically ill and disabled by it; 2) I weigh 300 lbs (I do); and 3) I have a disabled son who may always live with me. I did this to IMMEDIATELY weed out anyone for whom this was a problem. 90% disappeared. Good riddance. A few said, hmm, okay, thats interesting, and we remained friends, but not romantic interests (and never met in person). But one man said, so? whats your point? We've been married for ten years now.

I share this with you for encouragement. There are men out there for whom your health will not be an issue. And friends who will love you for who you are and not judge you. Anyone who is less than supportive doesn't deserve your time.

Feel free to memail me if you want more information on coping or anything else.
posted by batikrose at 12:21 PM on July 17, 2013 [4 favorites]

Your first boyfriend was an abject asshole. He colored the way you think people will react to your CFS. Most people will not react that way. It is going to be a challenge for you to communicate it. Just like any other disease, some people will not want a partner who has it. It might be too much for some people to handle. But what was really improbable (that you unfortunately had to deal with) is someone who dated you AND belittled you for your disease. That person was an asshole and probably emotionally abusive. You might run into people who will end up wanting to not date you (and they will likely be upfront, honest, and compassionate about this, or they'll just cut things off early just like the rest of us have to deal with). However, you are very unlikely to date someone emotionally abusive again, who agrees to be your boyfriend but belittles you the whole time. Get it into your head that you experienced an anomaly. And not something you'll have to put up with again because you will cut it off early. Hopefully that will give you some more confidence in dating.
posted by htid at 12:47 PM on July 17, 2013

I have FMS. I found out this year, but I've been feeling like crud for as long as can remember. I'd already been with my SO for a year when I got the diagnosis. Prior to this relationship, I'd had similar experiences as you, and I have friends right now who don't "believe" in it - one of whom is a medical professional.

It sounds glib, but I just don't waste my limited energy and "good days" giving a fluck, anymore. My SO is wonderfully supportive, as are my closest friends. Talking about my chronic pain, low energy, low mood, and all of that isn't always easy -- because early on, I had started believing the haters, that I was lazy, it's all in my head, and that I just needed t,o try harder... and sometimes I catch myself buying into that thinking.

I told my SO that I was tired and achy all the time right around the time we made the relationship "official," which was about three weeks in. When I tell people, I say it pretty much as PuppetMcSockerson has it - not a big "There's Something I Must Tell You That You May Find Troubling" but just "So, there's this thing..." I no longer discuss my health with anyone I don't trust or who isn't supportive and while I am not ashamed to say that I have FMS, I don't tell all and sundry about it either.

Hang in there.
posted by sm1tten at 1:03 PM on July 17, 2013

I sometimes find it easier to say "I get tired easily" or "I'm low-energy" rather than "I have Chronic Fatigue Syndrome." It serves to explain for the moment, without it being a label. I've been easily tired since I was a teenager and didn't find it impeded my ability to date (though occasionally my ability to stay awake for one) or marry. It does make raising a kid a bit more difficult, but my husband and I balance things so that I get enough rest, and it works. With the right partner, you should be able to take care of your health and get enough rest.

It's nice to be able to have your community of friends know that you need a bit of extra rest, but I don't think you need to tell any but the closest friends any details or why you need a bit more rest than other people. Just remember how many spoons* you have when you make plans with friends, so you don't have to cancel from tiredness too often. If I have invitations to multiple things in a weekend, I'll usually turn down most of them with a "Oh, we're busy that weekend" even if they aren't happening at the same time, because if I'm doing one or two things, I don't have the energy for any more. So for all intents and purposes, those one or two events make me busy.

Likewise, I have a friend who has a disease (I think, sketchy on the details) which makes it bad to be on her feet. I need to know very little of her details or condition -- but it means the world to me that I can make sure she always has a good place to sit (with her feet up -- it helps) at my house. I think your friends will feel good knowing little things that can make life easier for you too, whether it's not planning to do to many things in a row, or whatever can make your spending time together better.

*Yes, I love spoon theory. It's so useful and explains better than any doctor's files why I can't do more in a week.
posted by Margalo Epps at 8:36 PM on July 17, 2013

I posted a similar question here to on dating with fibromyalgia a few years back. My husband had dumped me over it, I had a lot of guilt about it and despaired about when and if to disclose.(btw he later came down with cancer and apologized profusely for his earlier lack of understanding). I just logged on to say that it's been easier for me personally to date men who themselves have health issues. I've dated one man with a bad back and another with a bad heart. We understood each other's needs to pace and take it easy and still enjoyed each other's company. There are plenty of men out there with health issues too. I've just kind of stumbled upon them, so I've no tips for meeting anyone yourself, but do endorse them as good and understanding partners (if they've emotionally come to terms with their limitations). Good luck, my dear.
posted by Jandoe at 10:21 PM on July 17, 2013

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