One of the worst feelings I have almost as much as pain is guilt. I see the little inspirational memes on my support group sites that say, “You’re not unreliable, your health is.” It makes sense, but it goes so much deeper than that. And let’s face it, most other people don’t often see it that way. And part of me understands, because even though I have this disease, I don’t understand why some days you have somewhat tolerable pain and a bit of energy which allow you to bathe and possibly leave your house (with the aid of a pharmacy of medications), and others are so intolerable, they are spent writhing in agonizing, unrelenting pain so bad that you actually consider ripping your own hair out, just to try to redirect the focus of the pain. If your scalp is in immense pain, your body won’t be able to keep up processing all the pain in other places, so the focus moves to your scalp, or elsewhere. Yes, I speak from experience about that. None of this stops the overwhelming guilt you feel, though. Your body has betrayed you and failed you, and worse than that, this causes you to betray and fail everyone still in your life, when you know what it has taken for them to still be sticking around.
I hate not being able to be counted on for almost anything because I never know what my pain is going to decide to do to me not only day to day, but hour to hour, and even minute to minute. It really does take a fucking saint to put up with this, so there’s always that part of me that almost understands why we are forgotton. Almost. Then I always put myself in another person’s shoes. Is it that difficult to send out an extra invitation or make one more phone call to invite the cripple? I didn’t even get invited to my own brother’s wedding in Vegas because they assumed I wouldn’t be able to make the trip. When I got married in Hawai’i, I still invited him and others I knew weren’t going to be able to go, but I wanted them to know I was thinking of them and wanted in some way, although not possible, to include them. It just becomes too easy for people to forget about you when you miss out on so much.
There’s such a duality between getting sick temporarily and being chronically sick. When someone gets sick, people come out of the woodwork to visit you, bring you flowers or send you cards. They call you often. They even offer to clean up your house or help with the laundry, and maybe even drop off a meal for the family. Well wishes galore! But when you’re chronically ill, none of that happens. Just when you need help the most, everyone disappears. This also causes guilt. You’re angry with your body for betraying you, and you feel guilty for being sick, for had this not happened, you’d still have all those people in your life. Even though your disease did a tremendously expedient job of weeding the weak, worthless people out of your life, you still feel isolated and lonely, and guilty that you yourself had little say and even less to do with this process.
I am drowning in guilt. I feel guilty because my husband got shafted. I am unable to give him the marriage with which we started. Obvious sexual problems due to pain give me terrible guilt. I always felt we had the creativity to overcome some of these issues. However, shortly after my husband and I learned about the severity of my illness, he firmly decided to become my primary caregiver and ceased being my spouse. I think it’s just too much for him to handle. Everything falls on his shoulders, and it causes tremendous stress in our household. I wish we would have gone to a therapist who could have prepared us for some of the obstacles we were going to face as a couple. Now, I feel like my husband is just trying to keep his head above water, and for that reason has refused to go to therapy with me. It’s difficult to see how things can get better when all you do from the moment you wake up to the moment you fall in to bed is try to just get through the day, trying to hopefully get everything done. And it’s my fault that our lives are this way because I am the one who got sick and tagged out of life.
Believe it or not, there is nothing more that I want to do than chores around our house, which has turned into one giant hoarder mess since I haven’t been able to clean or even get after my family to clean. Ever try to get a teenager to clean the kitchen counters by yelling from your bed in the back bedroom? It simply doesn’t happen. And all those little nudges you give your spouse to finish a chore over the weekend end up being screams from the back bedroom, asking whether he’s done it, yet. Yeah, this brings nagging to a whole new level. Then there’s this bizarre counter-guilt martyr situation that happens. When I do feel okay enough to try and accomplish something around the house, my spouse doesn’t want me to cause myself pain by doing chores, so out of a mix of guilt, care, and quite a bit of anger, he stops what he’s doing to finish the chore I tried to start, screaming about why I have to do that to him at that moment. Fucked up guilt all around. It’s a guilt fueled catch-22 that results in anger and resentment, and chores that never get done. I’ve tried to explain that doing chores when I am able makes me feel normal. But he associates the inevitable pain I have later with me trying to do the chore. He can’t seem to understand that pain was coming regardless of whether I tried to do anything. Then he feels guilty, and I am holding tears back, white knuckling my blankets, waiting for him to go to sleep so I don’t have to visually hide the pain anymore. It’s ridiculous, counter productive, and something that I don’t think will ever change. And it makes me feel terribly guilty, but I will not give up.
I also feel tremendous guilt about how I have single-handedly knocked our family several notches down the socioeconomic ladder, and have several times feared losing our residence from the enormous financial strain having a chronic illness has put on my family. And we have pretty good insurance. But because I am unable to work reliably, we are a single income family. By itself, that wouldn’t be bad at all, but when you add the cost of doctors visits, procedures, surgeries, time taken off work by my husband to care for me, medical devices, implanted medical devices, walkers, wheelchairs, and the outrageous cost of the pharmacy of medications that I have to take every day. I honestly don’t remember the last time I bought anything for myself. Wait! I know I bought two bras a couple years ago, but we were on vacation, so I splurged. Who the fuck goes on vacation and when thinking about splurging, buys underwear?? Someone racked with guilt that they are costing their family money they don’t have, that’s who. And it not only fills me with guilt, but breaks my heart that I feel like we’ve had to turn down my daughter’s requests for normal teenage items. The worst part is that she feels guilty asking for things she wants or needs because she knows our situation. That is all on me. I am the cause of the financial strain. And the financial strain causes stress. The stress causes strife and resentment. The strife and resentment cause palpable tension. Palpable tension causes misdirected anger. All of that causes pain.
I feel guilty for each and every time I’ve had to cancel an event. Not just a night out (Ha! What’s that?), but I’ve missed countless Christmases, birthdays, family parties, school programs, events, and productions with my daughter, and even a vacation to my in-laws in Florida for Thanksgiving. My daughter is a sophomore in high school, and I’ve never even been inside of her school, let alone met any of her teachers or anything. A phone conference with the teacher is not the same, and it certainly says something about me as a parent- that I can’t be bothered to drive in to the school to meet them in person. At least that’s what I’d be thinking. And there’s nothing that makes me feel more guilty than when my daughter mentions it. She’s missed too many events, programs, parties and outings because I’ve been unable to drive her,and my husband has been working. My poor daughter has had to shop with her dad to buy her bras and panties. I’ve already begun setting aside some money to pay for the years of therapy that she’s going to need for that. I haven’t been able to take her shopping, except the occasional Wal-Mart or Target trips because they have motorized carts. These are things that I will never get another chance to do again. Pain has kept me from doing even the most basic things with my family. Nothing causes more guilt than missing an event for my family, except causing my family to miss an event because of me. I try to plan no more than one outing a week, because it takes a few days for me to recover from whatever event I attend. And you know when I say event, I usually mean doctor’s appointment. I feel terrible guilt. Guilt causes stress. Stress causes more pain, and it’s the same damn, vicious, never-ending cycle.
I feel the guilt more than I feel the pain. It hits me like a tsunami, and I can’t get my head above the water long enough to take a breath. There are only so many times you can convince yourself that it’s not your fault, it’s your body’s fault. And it doesn’t help that when I am able to attend an event, I look like I’m not doing too badly. I converse with as many people as I can because I don’t often get to see people in the flesh. I try not to use my wheelchair unless necessary because it makes people uncomfortable. And I, for the most part, look pretty good. What people don’t know is that it has literally taken me two days on average to get ready to leave my house for an event. I also had to take an almost illegal amount of various medications to be able to pull that off, and that I am carrying a pharmacy inside my purse and downing handfuls of medications throughout the event just to make it through. And I’m pretty sure people don’t know that attending that event will sideline me (bedridden) for the next week. The only thing I am left able to do is to try to forgive myself once in a while and remind myself that people usually go by what they see, which makes it more difficult for them to understand the already enigmatic syndrome of chronic pain. The people I do see are the people who are sticking it out with me, and that is more than worth the pain of getting ready and the pain following. Those are the people that are pure gold. In a way, people with chronic disease are very lucky because our situation has weeded out the people who don’t really truly love you. The last thing I must do is enjoy the hell out of the times I am able to attend. I may pay with pain to do it, but it is so worth it!