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rockfan's avatar

A question for those that have been diagnosed with a chronic disease or illness - did you make an effort to let extended family and friends know?

Asked by rockfan (13429points) January 15th, 2019
16 responses
“Great Question” (4points)

A few years ago I was diagnosed with PXE, a rare genetic disorder that negatively effects the blood vessels in the body, especially around the eyes, heart, and stomach, which can cause vision loss, bleeding, and heart disease.

Fortunately, I’ve been eating an extremely healthy diet the past year and a lot of my symptoms have been relatively mild. I’ve also avoided lifting heavy things which has helped the blood vessels around my eyes.

But, I still deal with chronic fatigue, brain fog, stomach issues etc, which has affected my social life a bit.

I want people to understand that it’s because of my genetic disease, but I also don’t want people to feel sorry for me or treat me differently. So I’m still unsure whether I should let people know.

For those that have been in this situation, what did you do?

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Answers

Jeruba's avatar

No. I didn’t tell anyone but my husband until much later. I had to figure out how I was going to deal with it myself before I started answering anyone’s questions.

I eventually mentioned it to friends and family, but without much emphasis. I didn’t want others stepping in to try to manage me. My husband wisely left it to me.

I never did tell my in-laws, not in more than 20 years. I knew they’d be bringing it up at every opportunity: “Should you be {eating | doing} this? Won’t it cause a problem with your condition?” “Will this {food | activity | flower arrangement} bother your condition?” “I know you might not {want to | be able to} X because of your condition.” Ugh. No thank you. I went through this once already. What was masquerading as consideration was really a nonstop passive-aggressive reminder of some deficiency or inadequacy. No amount of resistance, from light brushoffs to pleading, would get them to stop. So from then on I kept it all away from them. I wasn’t losing much in the way of support anyway.

If it had been a different sort of disease or disorder, I might not have had much choice—especially if the symptoms were conspicuous and affected our interactions. Then I think I’d have been matter-of-fact about it, but downplaying it as much as possible. I’d have offered to answer all questions candidly up front. And then I think I’d pretty much have stopped talking about it. I would not have wanted to be asked about it all the time.

canidmajor's avatar

Only if it directly affects them in a way that is ongoing, and requires an explanation. Otherwise I might only refer to the visible symptom(s), as they are all easily explained by circumstance (fatigue, etc)

Kardamom's avatar

I don’t have a chronic illness, but several friends and relatives do.

One of the best things that a dear friend did, was to go on Facebook and make an announcement. Not publicly, but to all the people she thought needed to know, or would want to know, so that she wouldn’t have to repeat the story a hundred times, or to have other people trying to explain the situation to others, and maybe getting it all wrong.

She also did it, so that she could make one statement to explain to everyone why she would not always be available for family gatherings, or casual outings with friends, or to make any plans that were set in stone. This was to explain to folks that she wasn’t ignoring them, or trying to be rude, or to be a party pooper, it was just because she was and still is in a lot of pain, suffers from fatigue, has to keep a regular schedule of doctor appointments, and her meds have to be taken at the same time every day, and some of them make her drowsy.

It was easier to “give her excuse” in advance, within her Facebook message, so that her friends and loved ones wouldn’t think she was ditching them, or didn’t like them, or didn’t enjoy their company, but she also couldn’t keep on having to explain to each and every person, because it was simply too exhausting.

She gave a brief, but not graphic, account of her condition, her treatment, and her prognosis for the future.

Basically, she was answering the questions ahead of time, so that people wouldn’t need to ask.

Then she gave some ideas for things she could use help with, and she was very specific, and named names.

She explained to “everyone else” that she would appreciate getting cards and letters, but she simply didn’t have the strength to reply to most of them, but she still appreciated receiving them.

She also explained how she was delegating tasks to a few people (I was one of them) who would be the “middlemen” for her. Also her husband, and two other friends. That way, when people got curious, or wanted to share information, or offer to help in some way, we acted as the go betweens, and the people tasked with updating everyone, so my friend would not have to worry about all of that responsibility of explaining things to everyone. People could go to us, instead.

So now, she periodically updates the info that she shared with everyone on Facebook, so that people know she is still in their lives, even though it’s often not possible for her to join them in their activities.

This has really been helpful, because she has tons of friends and relatives, and all of them were asking questions to her, and often the same questions. This was her solution, and so far it has worked pretty well.

Jeruba's avatar

This is also one of those irreversible things: If you don’t tell them now, you can tell them later; but if you do tell them, you can’t untell them.

Also once you tell a single person, you might as well tell everybody; that is, a secret is a secret only if you don’t tell anyone. But at the same time, it won’t be as important to anyone else as it is to you, so they might actually forget about it (and not care to be reminded all the time). And if they do forget—will your feelings be hurt?

So it can be a bit tricky. My sympathetic good wishes in handling this.

Mariah's avatar

The short answer is yes, I tell people.

The longer answer: at times in my life, it wasn’t something I could hide. There is no other explanation for weighing what I did, besides some form of sickness, and I didn’t want people to think I had an eating disorder or cancer (high school rumor mills can be something else) so I told people. Only my closest friends knew the specifics because mine is a “gross” disease.

When I first went off to college I tried to hide it from my new friends, mainly because of the “ick” factor (especially now that I was sharing a bathroom with 19 other girls) and that backfired terribly. Being sick, alone in a new place, with no support system was one of the worst things I’ve experienced. What really kicked my ass was learning years later that the RA of my floor had the same condition. If I had just asked for help – from the precise person whose help I should have sought – I would have received it.

That taught me a lesson. I don’t keep quiet anymore. It is a fundamental part of who I am and is relevant to a huge percentage of my life experiences. One cannot really even know me without knowing this about me.

Plus, I am now politically active and I feel that being public about my health helps people understand the human factor of what’s at stake in healthcare politics.

My boss knows. My whole company, actually, knows (I gave a presentation about some of my experiences – it’s relevant to our work). Anyone who’s Facebook friends with me knows. It’s just out there. I’ve never regretted that, but maybe I will someday. One consequence is that people feel safe coming to me to talk about their own illnesses, which I love.

There’s no right or wrong way to do it. I choose a radical openness because that’s what feels right for me, but you’re not wrong to keep it private if that’s what feels right for you. If it’s affecting your ability to be social (e.g. fatigue) it might be easier to just come out with it than to make up excuses all the time.

JLeslie's avatar

I didn’t tell people right away. After years I started telling people, and then at one point I wished I hadn’t told so many people.

Below are the pros and cons I experienced:

Pros
– a few people knew other people with my problem and I got some good leads and some advice to try new treatment and find doctors who specialized.
– Many people told me sometimes it takes years, but things can get better. They were right. They shared their stories. These were people who had very different illnesses, but had the experience of time.
– once you reveal chronic illness to people they often will disclose their chronic illness if they have one, and you are now part of the club that understands. I personally think it is almost impossible for people to understand chronic illness and chronic pain if they don’t suffer from it themselves.

Cons
– people will start giving advice you don’t want to hear or aren’t ready to hear.
– Some friends will be overly dramatic with you, which can be very annoying. Worried about you and making it into a big deal even when you’re doing fairly well. (However this will be the minority in my experience, I’ll say most people will barely flinch about your problem if you “look” ok). This is the problem with most chronic autoimmune type illnesses. If you look good you must feel good, right? Yours is genetic I think, I don’t know if it’s an autoimmune.

I think be selective who you tell. You told us, so now you have a place to talk about it. You can test telling a friend or two, but also remember if you want something to be a secret then you have to keep the secret. Meaning you tell one person, and eventually they might slip and tell.

For me telling friends was easier than family. Family worries too much.

That’s my experience.

Hawaii_Jake's avatar

It was a process. I opened up slowly to a few people over the course of a few years. It’s been 17 years since my diagnosis, so now I tell anyone that needs to know without fear.

Dutchess_III's avatar

I don’t think that I would. It pissed me off so BAD when Rick went and blabbed to everyone who would listen about how sick I was when I wound up in the hospital with pneumonia. I mean he told everyone in town, and everyone in his family. But…that’s just the way his family rolls. I guess it’s part of what makes their lives with each other interesting.

Kardamom's avatar

Another thing to beware of are the few people that will come out to “one up you”. One woman, who was only an aquaintence of my friend, when she learned that my friend was sick, suddenly remembered that she was a cancer survivor, and now has two completely different kinds of cancer (my friend does not have cancer, she has a completely different type of illness). The acquaintance never mentioned ever having had cancer, until my friend went public with her own illness. My friend discussed the “cancer” with the acquaintance regarding when and where she had been treated. She only gave vague non-answers. The acquaintance began to become very needy, and overly chummy. My friend’s illness was progressing and she didn’t have time to hold this woman’s hand. The acquaintance grew upset and started to text my friend all the time, demanding to know where she was, what she was doing, and why my friend stopped treating her like “family”. Remember, this woman was only an acquaintance.

So after my friend had put out the general email alert, explaining why she couldn’t personally answer everyone’s emails, texts, and phone messages, this is when the acquaintance woman announced that she now had 2 more, different kinds of cancer.

My friend asked her about the treatments she was receiving, and got more non-answers. That’s when my friend came to thw conclusion that the acquaintance was either just lonely, jealous, or batshit crazy, or a combination of the 3.

My friend chose to walk away from her. This was about a year ago. Other people that know the woman, have seen her recently, and have reported that she looks fine, and as far as they know, she never had cancer.

So beware of people who want to be “worse off” than you

rockfan's avatar

Thanks everyone for your answers, I really appreciate it.

Adagio's avatar

If I suspect anyone is feeling sorry for me, or treating me “delicately”, I promptly hit that on the head and don’t allow it. If there is someone who can’t get over their temptation then I would keep contact with them to a minimum. I know this is not always possible, especially with family, but being up front about it is the best approach, for me at least. Sometimes writing to a person and explaining very specifically what you need and don’t need is quite sufficient to affect change. Sometimes people need brief “reminders” along the way, but that’s okay.

cookieman's avatar

Nope. Nobody’s business other than my wife and daughter’s.

Aethelwine's avatar

Yes. I see no shame in being honest.

Dutchess_III's avatar

It makes me uncomfortable.

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