Sunday, June 1, 2008

What I Wish People Understood

Most of my posts on this blog have a taste of tongue-in-cheek humor or insight or perspective or...something useful or entertaining. I don't think I have a positive spin for this one.

I'm going to be 42 years old this week. I look much younger; most people take me to be in my early thirties, and people are often shocked that I have a twelve-year-old daughter (and more shocked to discover that I was nearly thirty when she was born). That may or may not be relevant, but I think it is--I think the fact that I don't "look sick" works against me every day.

I have a malformed renal artery that may or may not be the cause of chronic high blood pressure. I am dependent on a medication that causes fatigue and depression. I have a minor heart valve problem, not serious or life threatening, but which means that when I get a jolt of adrenalin or I'm sick or I don't get enough sleep or any of a dozen other triggers, my heart rate shoots up and stays there...I feel my heart beating in my whole body, and I can't sleep because it gets worse when I lie down. When my blood pressure is unstable, I have migraines sometimes 10 or 12 days a month, so severe that I throw up and the blood vessels in my eyes break. I have dizzy spells and see little silver spots floating in front of my eyes.

Sounds like a long whine, I know, and I'm really not whining. I know that a lot of people have it a lot worse than I do, and I'm very grateful (especially since I'm a single mother) for the fact that I've been able to keep working. But here's my problem...because I AM able to keep working despite the cost, because I do make it a point to get out and do as much with my kid as I can, even though it more often means just sitting outside and watching her play these days than playing with her, people tend to dismiss my limitations. I don't think it's that they don't believe me, quite. Well, not most of them. I did have one boss, recently, who opted not to believe that I was sick and to solidify his position by refusing to look at medical documentation because he "didn't want to be that kind of boss." But it's rare. For the most part, I think it's more that it's just not concrete for people.

I get diagnoses, treatments are suggested, sometimes tried, and my friends are sincerely concerned. But life goes on. Nothing changes. And I don't LOOK sick. I don't sound sick. The person sitting across from me can't see the little lights floating in front of my eyes and when I say I can't walk any farther, the person walking next to me can't feel the way my heart is quivering.

Sometimes, I have long periods when I feel reasonably well and, if I'm not stretched too thin by necessities, I can go about my life like a normal person, socialize, walk, play with my daughter. There are other periods, sometimes equally long, when it is literally all I can do to show up to work every day, feed my kid, and get enough sleep to stay alive.

And that "stay alive" thing isn't drama. Before I was out of my thirties I was hospitalized for my blood pressure twice, and both times it was terrifying. The medication that is supposed to instantly drop your blood pressure didn't work on me. My blood pressure was so high that one doctor said that if it stayed that high it could cause brain damage even if I DIDN'T have a stroke. I know what it feels like when I'm in trouble, and I know what's going to happen if I don't take firm hold of it.

And yet my friends...people I know are sincerely concerned about me...simply can't accept it when that happens. They email and call in guilt trips about how long it's been since they've seen me and how I'm neglecting them and how they miss ME even if I have better things to do. They bombard me with invitations and counter-proposals and talk about me having "excuses" not to do this or that.

I have an excuse. It's that the number one goal in my life is to live to see my child into adulthood and to be able to work long enough to support her until she's self-supporting. That's it. That's what I'm living for. And anything that threatens that doesn't happen.

If that sounds like melodrama to you, then you're a very fortunate person, and I envy the fact that you've never had to choose between living your life and preserving it. Sometimes, that's my reality.

My daughter recognizes it to some degree and I hate that. I can't bear when she says, "Mommy, why don't you go take a nap?" even though it's a summer day and she's dying to get out somewhere, because she just watched me fall asleep with my head in a pile of laundry I was folding. I hate when she comes out at night when I'm working and asks if there isn't anything at all that she can help me with. It makes me ill that her childhood is limited by my health.

But it also makes me angry. It makes me angry that my 12-year-old is willing to set aside her own wants to make sure that I get the rest I need and don't push myself, and most of the adults in my life can't do anything but take it personally. Sometimes, in my worst moments, I envy the people who are just a little bit worse off than I am. If I were in the hospital, after all, no one would be mad that I couldn't go out to dinner or make a quick trip into the city or go swimming at someone's house or any of the hundred other things that seem as far off and unreal to me, in the bad phases, as flying to the moon.


Barb said...

Thank you for posting this. I think this is a reality that most of us are sheltered from... I've only gotten a taste of how debilitating it is to have a true physical limitation and MINE isn't life threatening.

BNS said...

Let me add my thanks for this post. I, too, have some chronic ailments: osteoporosis, plus degenerative arthritis in my spine and hips. These ailments are not life-threatening, but they certainly do prevent me from doing many of the things I would like to do these days. I experience pain at some level on a daily basis. The day to day difference is one of degree. I don't squawk about it much, so many people do not understand why I can't or don't or won't do this or that.

As a young and middle-aged woman I was what my husband calls a "sport model" - very active, outdoorsy, physically fit. Now these ailments seem to have curtailed my middle age and hastened me into physical old age before I was ready for that.

Well, this is turning into a parallel post instead of a comment, so I'll stop -- after I say thanks again. Sometimes there's nothing better than a little mutual self-disclosure for making us feel a little less alone.


absolutelytrue said...

I love this post and thank you for putting it out there this way. My Epstein Barr is annoying to me and those around me, but I am thankful that it is not life threatening.

I feel for you and Tori. It's certainly not fun and many people just simply don't have the capacity to understand. They don't see you bleeding or in a body cast and since they can't SEE what's wrong, even if they believe that it is wrong, it's hard for them to wrap their minds around.

So many times I've been thought of as lazy or just dull...and maybe I am to some degree...but I wish people would "get it" and understand that there are many serious health problems that are not visible to the naked eye.

Thank you Tiffany. You put this into words perfectly.

timethief said...

Thanks so much for posting this Tiffany. I wept as I read it and the comments too.

I also have invisible disabilities and what you relate with regard to the constraints you cope with in your life and the responses of your friends to them is is so very close to being me and the life I'm living that I was gob-smacked, as we Canadians are wont to say. I too have mitral stenosis and experience what you describe, aside from that the dragon in my bones is in recession but this summer it stirred briefly, and every day of my life I cope with the symptoms and pain association with fibromyalgia.

Like BNS I too saw my active middleage years that included training horses and dogs, teaching aerobics and yoga, and working a fulltime job give way to a premature physical old age. I am now to a very large degree housebound.

I am grateful that I have skills that I can put to use doing contract work. I work hard when I can work but sometimes I can't. I cope time as best as I can without whining. I'm most grateful of all that I have a compassionate and caring husband.

Like you and the other two who have commented I wish all of my new friends and acquaintances would "get it" and not assume I'm lazy, odd, or making up excuses. My invisible disabilities are very serious and I have constraints. I can tell when I need to back out of plans due to my health. I cannot push the envelope without winding up in hospital. I am allergic to 129 different drugs and aside fro opiates there are none that can be used to combat the pain when it becomes intolerable.

Bobbie said: Sometimes there's nothing better than a little mutual self-disclosure for making us feel a little less alone.

I add my thanks to hers as well.