Tag Archives: isolation

Not Particularly Original Thought


Plenty of people have written about the oddities of social niceties; particularly the expectations bundled into the question, “How are you doing”/”How are you?” as greeting. We all know that 90% of the time, this is not a question that expects (or desires) an honest answer. The prescribed response is, “Fine! How are you?” To which the answer is also supposed to be, “Fine!” Then we go along our merry way, where everyone is fine and no one is burdened with too much information about one another.

Having spent much of my life emotionally chained to a person who is borderline and a compulsive attention-seeker, I learned to really dread that question. That person’s answers were often so packed with TMI one felt they might have stepped in something squishy and hard to remove. As a result, I developed a severe allergy to any and all attention-seeking. I became the sort of uptight white lady who would be aghast (and a tetch judgmental–ha, okay, far more than a mere tetch) if someone were to suddenly launch into an inappropriately intimate response to the question.

An example: I recently ran into an acquaintance at a local shop. I asked, “How are you?” and swear to dog, within minutes I was regaled with information about a pregnancy scare, a broken condom, and someone’s spasmodic vagina. Honestly, most of me immediately ran away, leaving only a shell to nod and say, “Oh…” and “Wow” in a faint voice. It’s a double-edged sword, in that having suffered much judgement in my life, I endeavor to be a person that others feel they can talk to while at the same time often being the listener and not the speaker in those exchanges. They can tell me all that, and I can leave them feeling like it was okay, and they know that I am doing “fine.”

So, while I became the X-man of Showing Not My Hand, I also ended up being pretty damn isolated and lonely. I think that’s a big part of why I find blogging so enchanting–I get to talk about myself, and for much of my life, I’ve not allowed myself to do that. It also results in a sort of boiling over, though—when I start to resent how much I am expected to not only care about others but to also always be FINE, I may lose my composure in a big way, becoming the vulnerable mess of raw nerves and anger that I want no one to see. So I walk this line, fearing that I might accidentally share and be punished, while also brimming with unspoken reality (one of the traps that my borderline often set was to furiously attack anyone for sharing anything that might distract the audience from her, the center of the universe. That’s actually why you can’t google this blog–even as cloaked as my information is, the idea that I speak of my own experience would trigger that person to pour gasoline all over this and set it ablaze. It’s happened before.).

Having this wild and woolly collagen-based disorder that affects everything in my body has added a new wrinkle to this set-up. I’m not sure that I will ever, really, feel “fine” again. Yet, I do not want to be that person that spews a litany of problems every time a socially prescribed inquiry is made. I’ve come a long way, in that I am no longer completely locked down and committed to always being FINE–I have found some people who do want realistic answers and respond lovingly when I say, “I’m not feeling well” or “I’m having a hard time coping today” and such. Yet, even in intimate relationships, I fear that a daily, honest answer will wear away at those closest to me.

I tend to go through a sort of triage when my spouse asks me, “How are you feeling today?” Like this morning when he asked that. I could list everything: “Well, I slept all night last night so that was great but my carpal tunnel is flaring up and my hands hurt, and my hip wakes me up briefly at night and my shoulder is fucked up and I think it’s starting to cause nerve damage, and I am really dreading first dress tonight and fantasizing about quitting my job and becoming housebound.” On the other end of the measuring stick would be, “Fine.” So to be in the middle, I try to pick maybe two things. “I slept well, finally, but I wish we didn’t have first dress tonight.” What’s most pressing in my load of troubles right this minute? I worry he’ll get compassion fatigue eventually and resent the fact that I can’t just be “fine” anymore.

The key to some of that is having more than one person to confide in. I cannot, and should not, make him the only bearer of my ills. I have a Shrink for that (although tomorrow is our last visit as she’s retiring and I haven’t set up a new one yet). I have a handful of close friends that I feel pretty comfortable with and that I think won’t start to see me as just a set of illnesses and not a person. I have my mother.  I have the message boards at the Ehler’s Danlos Foundation’s group on Inspire.com. And, I have this blog. Everyone’s life, ultimately, is lived alone. This both terrifies and comforts me and I try to find my way through the social swamp and determine when the answer should just be “fine” and when it can be in the middle and when the rare occasion that I can set the whole mess in front of someone presents itself.


Maybe I’m Allergic to July


If my husband were writing this, he’d likely say that my sudden descent into fury and then hysterical, ugly sobbing for over an hour last night came right out of the blue. Except that careful examination of events leading up to that suggest that there were many warning signs that might have been noted in order to batten down the hatches in time. I am past the point in my life where my behavior is something that happens in a vacuum and is related to the inscrutable whims of having ovaries.

Most of my life my emotional tactics have been polarized by being in the shadow of a person whose voice needed to the the loudest in the room, whose needs had to be greater than anyone else. The tacit agreement that this person deserved all the space/love/attention was that which forced me into a corner with my own emotions. I’m tightly lidded, and sometimes  even I am not reading my inner barometric pressure very effectively. It’s my job to be fine. Always. It’s my job to be rational. Always. I am never sure what the right balance is, so I tend to fail to release some steam in time to avoid a complete breakdown. Sometimes I’m not in touch with my feelings enough to know that I need to bleed a little air from the lines before something blows.

Second only to having a rare, incurable condition that includes chronic pain and a host of other oddities is the isolation and loneliness that come with it. It’s not as if someone comes across to find me bleeding from the head or with a visibly broken bone that demands action. People really only know if I am in pain if I tell them. It’s not my style to report my pain to people constantly, and I don’t want to become the sort of drag that can only talk about themselves more and more loudly to gain attention. I compensate well enough to fool even myself sometimes.

From Sunday night until Tuesday night I woke at about 1:30 or 2:00 am, with significant pain but also a racing heart and scattered, unsettled mind. I lay awake until 4:00 am each time, trying not to freak out. Tuesday night I planned for it. I drank less in case that was the issue. I took a bath to relax (instead it put my heart rate at 119, but I tried) I went to bed early. I set my mind up with things to think about should I wake up, and reminders about relaxation. I woke up at 1:30 am feeling both angry and unable to focus or settle my brain. My shoulder was terribly painful so I iced it, and whiled away the anxious hours until I fell briefly back to sleep at 4:00 am.

Once I got up, I Dr Google’d the beta blocker I’m on–Propanolol. Surprise, it can cause wakefulness and disturbed sleep particularly in the wee hours. Believing my PCP to be away on vacation, I finally decided to text him anyway around 10:00 am. I said to my husband at lunch time that I didn’t really think I could be asked to deal with all of this (pain, sleeplessness, lack of professional medical support). I caught the edge of tears in my voice and stuffed that back away. Part of me might have hoped that my spouse would immediately take me in his arms and reassure me, but that part of me is an immature girl who wants her mind read. Or, what it really is–I need someone else to bridge the gap between the growing emotional tension and the place where I can let some of it out constructively. When they don’t hear that unspoken request, I feel abandoned and angry.

I waited all day to hear from my PCP. I finally did, at a little after 5:00 pm. He’s not away on vacation after all (the only excuse I would find acceptable for not getting back to me). He told me to taper the Propanolol. I had to query then as to how much? How long? A series of texts trying to elicit information from him. And then at the end of that conversation he texted, “I have another EDS patient who is doing well on Cymbalta. Have we tried that?”

If you wish to go back through my archives you can see that last July/August, we tried Cymbalta not once, but twice, and my reaction to it skirted the edge of “needs to be hospitalized”. On the surface, maybe, this is just a boo-boo on his part. To me, it felt like a ton of bricks. First, it would help if my PCP remembered my history, especially the parts that required constant texting for two or more days to make sure I got through the reaction. Second, I felt shamed; he has another EDS patient who is apparently easier to work with and gives him the satisfaction of helping. Third, I was alarmed that he thinks he’s good enough at this to manage another EDSer, because I generally feel like he would give anything to pass me on to someone more competent.

I texted back, “Twice. Serotonin reaction both times.” I never heard back. I actually went back to my archives, too, to make sure that my recollection was correct–once again allowing a medical professional to cause me to question myself and what I know. My husband even said, “That’s what he tried on you last year that was so bad?” At that point I was already imploding and missed that he was with me on this and might have my back. I was aware of feeling angry and tired and pain. I did not take a full inventory to see that my internal pressure was approaching the red line.

I’m giving up massage, the one thing that I could hang my hat on as working and helpful. My shrink is retiring in September. My pain has ratcheted up significantly. I’m again having a drug reaction that crosses yet another item off the list and leaves a significant problem unsolved. I haven’t slept well in awhile. I don’t have adequate medical care or support. I’m going back to work soon, when I will not have the ability to sit around all morning because I stayed up crying half the night. I have lost some of the support I used to get from my mother, because a mentally ill family member is too close for her to not to lose her focus and boundaries. There are NO solutions for any of my most pressing problems.

So the fact that I then went on to very much overreact to a perceived slight on the part of my spouse and go on a rampage of shouting that ended with him leaving the room while I sobbed and ugly cried is somehow not so surprising as it seemed last night. I can see that I made myself unlovable even as I demanded it from him, and was somehow thorny while wanting him to be willing to hold that thorniness close to him and be tender with it. I can see that there is no way I can be neat and surgical about my emotional state and subsequent falling apart. I completely lost my balance last night, and I feel pretty wobbly yet today. I’m not sorry for the sobbing because I needed to release it. I’m sorry I wasn’t able to let any of it out before it reached the atomic level. I don’t know how to have a well-timed, scheduled breakdown, nor should I be so constrained, but for my own sake I need to stay a little more in touch with my internal state.

Which is difficult when so many things are just not working for me right now. I’m probably not done crying.