Do You Have a Chronic Condition That Is Invisible?

@SilentSerenityy

Possibly. If it is obvious for everyone they can make some allowances and adjustments.

On the other hand it opens you up to prejudice and stigma so I'm not so sure.

HAE can be both visible and invisible, most of my swells are invisible or at least not visible without medical instruments.

This makes it difficult to determine a swell at times, so I wish it was visible for that aspect. LIke when getting a throat swell it would be great if my neck turned red or something. It also might make doctors take it more seriously than many do.

When it comes to the public, mine being invisible is likely preferable. The swells can be disfiguring and they scare little kids sometimes, get bullied for it when young and then there are the stares. There's also the abdo swells where even the person with the flattest abs suddenly looks comparable to someone ready to pop with twins. I know people who have to argue with doctors that they aren't pregnant.

There are times though that I wish the public could just see how I'm feeling without the disfiguring symptoms. Like when I either need to use a courtesy chair or not shop and the employee gives me a lecture about the purpose of the chair. Needing to sit down on public transit. Why I'm taking an elevator up one floor (actually have gotten lectures on that too). How sick their smoke or scents make me.

I have both chronic and episodic illnesses. Basically it started with an intussuception at the age of 8 months. (That means part of my intestine was removed because it grew shut)

Fast forward to today, and I have circulation problems, allergies and chemical sensitivies, IBS, spastic colon, a higher requirement for number of sleep hours, DLE (my mom has SLE) and yes, the list of internal problems unfortunately goes on. In a nutshell, unless I carefully manage my sleep, temperature, food, and stress, my body deteriorates rapidly. On top of this, I experience a level of menstrual pain that requires 1-2 days sedated on pain meds every 24-27 days.

The fact that the majority of my problems are invisible, and the rest I just "grin and bear" or have minor visible presentation, makes my life very very difficult. All of my life I have heard all the familiar phrases - "you look fine", "can't they just do x, y, or z about it?", "what's wrong *this* time" (this one usually comes with rolled eyes and a sigh), or my most dreaded "everyone else can do it, why can't you?". I have constant daily fear of job loss, due to only being able to put in 30 instead of 40 hours per week (nevermind the volume and quality of work I do - wherever I've worked it's always butt-in-chair time that matters). In my lifetime I have had to deal with non-stop passive-aggressive comments and behaviour from friends, family, bosses, coworkers, etc. (The worst was the day my employer actually asked why I don't just have my uterus removed so I no longer miss work, despite the fact that I am still of childbearing age, and have not yet married my fiancé. We have up to ten years left to decide if we want to have a child, and whether or not we want one naturally, or just adopt.) Some days I honestly don't know how I convince myself to keep going. Crying, anxiety, and depression are things I've grown up thinking are a normal part of everyone's day. In public and around anyone except my fiancé I just joke with people that it's further proof that I'm not actually human.

I don't know that I'd have an easier time if my conditions were more visible. I experience disbelief and dismissal of even the things that are visible, like my scarring along my hairline and eyebrows from the flourescent lights at work aggravating my DLE on flareup days, or the fact that I am now less than 100lbs despite being 5 foot 5, and eating like a grown man of over 6 feet. I don't think it's a matter of easier. I think I'd just be trading up the mental anguish for further phyiscal limitations. Boiled down and weighed against each other, I think I'd rather the mental anguish rather than lose the ability to say, see, or walk, or whatnot.

What would really help is having the people around me not forcing me to fit "average" or "normal", and not penalizing me for the way I was born.

If I've learned to live with what I can't do, and just find and enjoy the things I actually can do - why can't anyone around me seem to even put in the effort to try to learn to understand what I'm dealing with?

Do you have a chronic condition that is invisible to those around you?

Endometriosis.

How does it being invisible affect your mood/life/relationships etc?

It's hard for people to understand just how much pain I am in and why I do need to call in sick/leave work because of "just cramps." It's very hard to see a silver lining when I'm constantly failing my coworkers because of my uterus and when I can't so things I love such as martial arts, horse training, and hiking. Some days, it's all I can do to go to the restroom to vomit and go back to bed.

Do you think your condition would be easier to manage/cope with if it weren't invisible?

Possibly. What would make it easier would be for it to not be suck taboo to be young, childless, and still get a hysterectomy. I'm fighting for one (have been for years), but apparently I'm a baby factory because saving my uterus is more important than saving me. I've had to start a Go Fund Me campaign and save up money because my insurance refuses to pay for it.

@SilentSerenityy

I have about ten chronic pain conditions and others that aren't pain conditions. It is incredibly hard for me to do everyday things (things as basic as taking a shower). Forget having a job. Which causes stress.

Because I'm overweight I feel like people judge me and just think I'm lazy.

I absolutely think they would be easier to manage if they were visible. They would be easier for doctors identify and possibly treat. Others would believe me when I say I hurt. Or understand that when I cancel plans is not because I don't want to spend time with them. It's because my body won't let me.

@SilentSerenityy

I do have a chronic illness that's invisible to people around me. It's called fibromyalgia. It's a chronic pain disorder characterized by widespread musculoskeletal pain accompanied by a tidal wave of other symptoms including fatigye, sleep/memory/mood issues and more. Fibromyalgia amplifies painful sensations by affecting the way that the brain processes pain signals it recieves from nerves. So something as simple as a stubbed toe can end up feeling like your toe just got ran over by a train lol
It's caused me a lot of problems in school. I had to drop out, actually. I would go for a day and the 8 hour school day would drain all of my energy and then I would be stuck in bed for 3 days (the rest of the week, usually) recovering. The chronic fatigue that accompanies fibromyalgia is extremely difficult to manage, especially when you're trying to juggle school and work and extracurricular activities. I gave up lol And anyone who's strong enough to make it through that kind of physical/emotional pain is a saint.

This insible illness has several effects on my relationships with friends/family. Sometimes I'm unable to attend birthday parties for my nieces and nephews, or other holidays. With friends, I often have to cancel plans last minute which is annoying because I usually make all my plans weeks in advance, but some mornings you wake up and you just know that you cannot do it. It's hard to manage friendships, much less a relationship with a significant other when you're struggling to make it day to day with an illness like this.
The thing that sucks a lot too is the fact that there is no cure for it; Only treatment of symptoms. Since the main symptom is pain... That's everywhere... They just send you home with narcotics and pray you don't get addicted. It's extremely rare in kids, so none of my doctors will prescribe me narcotics right now since I'm not 18 because they are unwilling to take the risk of me becoming dependent on drugs, therefor I cannot go to school or do anything that would cause me extra pain because I have no treatment. Natural remedies help, but nothing takes all the pain away. Not even narcotics, but it'd sure be nice to take the edge off sometimes so I could function lol

I do think that my condition would be easier to manage if it weren't invisible. People, especially at school, who knew I was "sick" would always tell me "You don't look sick!" And that just drove me up the wall, because people are so quick to judge others based on how they look! They didn't realize I spent an hour contemplating if I should even get up that day, much less the effort I put into my appearance so that I would feel somewhat better about myself. Much less all the pain I'm hiding.

I have arthritis in both knees that you would not know by just looking at me, but if you are with me and I need the stairs it will be a different scenario. Going down the stairs is a major struggle, going up not much better.

I have trouble with my blood sugar which is invisible, my OCD is invisible. I do however wear my eating disorder and BPD.

i suffer with serve pins and needles in my legs and I do not sit with my legs and driving me nuts