The Hardest Thing I Deal With in My Life With Chronic Illness
The one thing I have the hardest time dealing with in my life is the lack of understanding.
• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?
That’s pretty broad, so let me break it down.
First, you’ve got doctors and nurses and surgeons who know what they’re taught in school about the disease/illness/syndrome/disorder, but they likely haven’t experienced it in their own life, so they may not know what it’s like.
Then you’ve got family and friends, who see what you go through but sometimes can’t help themselves from offering advice, cliché phrases or even criticism.
Let’s not forget the general public, too, who may think they’re entitled to judge you (we’ve all seen the stories about people leaving ugly notes on cars parked in handicapped spots).
Few of these people actually understand. I believe they can never grasp the fullness of it until they experience it firsthand.
Here’s what I feel they (doctors, family, friends, strangers) can’t understand about my chronic illness:
Fatigue
It’s not just, “Oh yeah, I didn’t sleep last night, either.” It’s more like, “I have slept 14 hours a day for the last six months, but I feel like I haven’t slept for three years.” Simply living is exhausting. Literally, standing up is tiring for my body (thanks to postural orthostatic tachycardia syndrome [POTS]), and when I’m in any position that’s not laying down in bed — heck, sometimes even in bed when I am “relaxed” — I’m always consciously holding all of my joints in place. It’s tiring. Things that may come naturally to others are things I have to exert energy for, on top of everything else that takes energy, and it causes fatigue, which is not the same as being tired. Also, just being in pain causes fatigue. There’s painsomnia (a term coined for those of us who can’t sleep because we’re in too much pain), which makes us groggy all day. And brain fog.
I can’t recall anything that happened more than a few seconds ago. My brain is so cloudy I can’t sift through it, so please don’t get mad that I forgot half the things at the store or forgot to do the laundry.
There’s so much to this that isn’t understood. People think I fake it because they don’t understand that when one lives with it for so long, you learn to do things despite it. I learn to go to work with a migraine, ignore the stabbing pains I randomly get, or to occasionally eat that one food I know I shouldn’t because it’s going to give me hell later but it tastes so good. In those situations, I’ve consciously weighed cost and benefit, and decided it’s worth the cost. People will ask why I can do the things I enjoy but not other things they want me to do, and it’s simple: I know what’s going to hurt, and I’m OK hurting myself to do things I love, but if I do everything people ask me to do and it hurts, I will have nothing left for myself. Some days I will do those things, but some days I have to be selfish and do things for myself — we all do; we all have to take care of ourselves, and that’s how I do it. And yet, there are some things I am not going to do despite the pain. Some things will make my situation worse, and I’m not going to do something I know is only going to make myself more sick, which leads me to my next point.
The Spoon Theory
Personally, I don’t like this metaphor for somebody who has a chronic illness — it’s a little too abstract. I prefer a battery metaphor: My whole body is constantly running on back-up power, on a generator if you will, because my entire life is just tiring. Literally existing is exhausting. When I want to do anything (go to school, work, the doctor, exercise, walk my dogs, socialize, cook, clean, anything) it takes up more power than just the baseline slow drain we all get throughout the day (like when you unplug your laptop and leave it on but you’re not using it, it slowly is draining one percent an hour or so). So you pick and choose, because you can’t always do it all. Some days I will not have any juice left in my battery so I do nothing. Others I will have 50 percent left and choose to spend it socializing or doing something I want instead of what people expect me to do. And some days I think I’m running at 35 percent or 100 percent, and suddenly I crash. I get the black screen and there’s no fixing it, only plugging it in and letting it recharge (sleeping).
Your “Advice”
I do not need your advice on how to live my life. I’m an expert in it in a way that you are not. When you offer advice or say “Try this” or “There’s got to be something else you can do,” I really just find it irritating. I know it’s coming from a good place, but do you really think I haven’t tried everything I possibly can? Do you really think I like living my life like this? No. I want my life back. And I’ve done everything I know and my doctors know to do. After we get our diagnosis, and sometimes even before, we are constantly researching what we can do to feel better.
How to Help
Don’t be upset that I don’t want to hang out, and don’t stop asking. Offer to help me grocery shop, offer to go with me to the park with my dogs, offer to let me text you on a bad day when I’m bored. Do not offer advice unless I specifically ask for it, or try to fix me and my situation.
Exercise
Exercise seems to be the cure everybody wants everybody else to try. Diet and exercise. Lose weight. I am meticulous about what I eat, although I have a sweet tooth and POTS so that makes it hard to stay away from junk food, but I track what I eat and really try to make sure I’m not being completely unhealthy. My diet is limited for reasons you may not understand — I can’t (well, I shouldn’t) eat meat, food dye, artificial sweeteners, hydrogenated oils, high fructose corn syrup, caffeine, high fat, high sugar, white carbs — the list is endless. And you’d be surprised at just how many of the foods you’d think I can eat have those things. So I follow most of those rules, but sometimes I can’t (if don’t want to be rude or I’m out and about) or just want to splurge, but I also can’t exercise. I’ve tried everything, even physical therapy for months, and nothing helps. It all causes pain that doesn’t go away, and I never actually get stronger. I could start working out more, but if I did I’d have to give up most everything else because I’d be too exhausted to do anything else.
Complaining
Most of what is bothering me isn’t even vocalized, so imagine that the things I’m actually saying are the really bad things. And honestly, a good bit of the time people think that we’re complaining when really it’s not a complaint, it’s just a statement. “My head hurts” is a complaint to most, but when I’m saying that, it’s really just what’s on my mind and I’m not looking for sympathy, just absentmindedly talking about what’s on my mind. Or I’m saying it as a reason for something. This is not a complaint, it is a reason why I don’t want to go out.
Mobility Aids
I want a wheelchair, it’s that simple. It hurts to walk, and it’s tiring to have to be on my feet the entire time we’re out, and I feel like I’m making everybody leave earlier than I even want to leave because I’m tired, so I want a chair. It would make my days last longer and make me feel less tired and burnt out. But when I say that, people think I don’t need it because I do those things that I’m trying to stop doing. Just because I look OK on the outside or did something last week without it, that doesn’t mean I don’t need it, and likely it means that whatever I am using is making my life significantly easier.
Medications
I am not going to stop my medications. Without them, I would probably be dead, and I’m not exaggerating when I say that. Also, I’m not going to take every medication you throw at me. I want to know what’s causing my issues, and I would rather have a fix than a pill to cover up a symptom. I would rather experience the symptom in some cases than take a pill that causes side effects.
On the flip side, I can’t magically take meds and be cured. Some do lessen symptoms significantly, some just slightly, but there is no miracle pill for me. Some chronically ill patients get labeled addicts and drug seekers because they ask for pain medicines. I live off of Aleve and Tylenol and I have a few other things I keep for “bad days,” although I’ve never actually taken them because I’m afraid once I start I will have to use them long-term. But I’m also afraid of the day that the doctors tell me my liver can’t handle any more Tylenol and my stomach can’t handle more Aleve, because then I have to move on to the stronger things. So I basically don’t treat my pain, because I want to be able to use the stuff I have for the bad days. I use creams and braces and hot baths and heated blankets to help, which does help, but it doesn’t fix it.
My Online Support System
When you have a chronic yet rare condition and you have no social life because you have no “spoons” to make and keep friends, you rely on your online friends. The virtual support groups have been as much if not more therapeutic than counseling, because I can connect with people who experience what I experience. They understand my pain and dislocations and how frustrating it is when doctors are trying to tell you that you don’t know what you’re talking about. The validation that comes from these people is incredibly crucial to my mental health, and when we get comments about how we need friends in real life or how they’re probably fake people, it’s really disheartening. Maybe they all are fake, but even if they are, I’m going to cling to them for as long as I can because that’s what’s keeping me together.
The Mental and Emotional Turmoil
Being inside my head is just scary and annoying, and takes a serious emotional toll. There’s constant questioning. Can I make it through this activity? Is doing X going to cause me pain? Should I cancel those plans? Why do I feel nauseous? Why does X hurt? Should I use my “spoons” on this or that? Is the doctor going to think I’m looking for drugs? Should I try that new medication/treatment? Am I going to get looks and questions if I go out with my cane/wheelchair/service dog? Should I just stay home? Why am I so tired? Why should I have to live like this? Who wants to marry me when I’m like this? Can I have kids? Should I have kids? How hard is too hard to push myself? Is pushing through the pain going to cause permanent damage? If I don’t push myself, am I going to get worse anyway? Why isn’t physical therapy/exercise/X treatment helping? Is this the dose of Aleve that’s going to make me get an ulcer? Will my friends stop asking me to go out if I cancel or say no again?
People think I’m obsessed with my health.
From outsiders or friends or significant others — we get that a lot. And I try really hard to not let my illness consume every aspect of my life. I want dinner conversation to not be about my doctor appointments. I want my date night to be fun. But that’s not always an option when you’re using a mobility aid or service dog or have to stop and take medications at a specific time, it can make something not as fun as you’d like. That doesn’t make me obsessed, it makes me mature enough to manage my health in the appropriate way. I try to not let it rule my Facebook and other social media pages. There are some decisions I have to make based on my health, so it’s going to come up sometimes.
Respect
Doctors, understand that I do know all this about my health. This is my life; I know everything about it since it’s my life, so treat me with some courtesy and respect. Respect is simple. Respect to privacy and acceptance is something we deserve. People do not have the position to ask anybody about their disability. I know maybe people are genuinely curious, maybe they think I’m faking, maybe they’re just nosy — it’s really none of their business. Ehlers-Danlos syndrome is real. My illness is invisible. I know you can’t see it. But that doesn’t make it fake.
Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.
Lead photo source: Thinkstock Images
Alexandra is a wife and nurse dealing with Ehlers-Danlos syndrome (a connective tissue disorder that affects every body system and causes chronic pain) and its comorbidities (postural orthostatic tachycardia syndrome, migraines, irritable bowel syndrome, mast cell/allergy issues, sensory processing issues, adrenaline dumping/panic disorder, and general dysautonomia). She loves her husband and three golden retrievers more than anything and still tries to do the hobbies she can, when she can (photography, horseback riding, painting, singing and playing violin and piano).
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