by Band Back Together | Sep 6, 2015 | Anger, Anxiety, Faith, Family, Fear, Guilt, How To Help A Friend With Infertility, Infertility, Invisible Illness, Loneliness, Marriage and Partnership, Romantic Relationships, Shame, Stress, Trauma |
I don’t think anyone knows the isolation that infertility brings with it unless they’ve lived it. Sure, we have several friends that we share all this with. Or rather, I do. I don’t know that my husband, Brian, has really told anyone what we’re going through. If you know him in real life, you know that he is silent about things that bother him. If you don’t know him, I cannot stress how quiet and private he is. But most of my friends know what we’re going through, and a few of our family members. Most people are unfailingly supportive, even if they don’t understand a bit of what’s going on.
Unfortunately, that doesn’t make it any less lonely, and doesn’t make me feel like less of a freak. Save your breath — rationally I know I’m not a freak. But that doesn’t keep me from feeling that way. And no amount of support from my very fertile friends makes it less lonely. Infertile friends — we are blessed with a few of those, too, though I wish they didn’t have to go through it either — make it even easier.
But when I’m in that exam room, having my lady bits poked and mishandled by the doctor and his ultrasound wand of pain, I am alone. When the Clomid headache sets in and I can’t even think straight, no one else is going to deal with that pain for me. When we schedule our love life, it’s just the two of us. When my cycle abruptly ends with the inevitable period, it’s just me.
That’s isolation.
That’s infertility.
But what really shocks me is the unexpected ways that infertility continually separates us from our family and friends. While it colors how I look at the world, it also colors how people look at me.
Between daycare and lessons, I come into contact with about 11 or 12 families each week. I have at least one doctor’s appointment each month and sometimes more, since I’m always having blood work and such, I need to let the affected parties know that either Brian will be here with the Munchkin Coalition, or that I’ll be late for lessons. None of them get too nosy or pry into my personal life, and all of them offer their support quietly, discreetly, and in a very sincere manner.
Except for one person. Who feels the need to tell me (again and again and again) the three stories she knows about other people suffering through IF, and how easy it was for her to get pregnant with her multiple children, and how she just can’t imagine how horrible it must be. And then, she says it…. “I am SO glad I didn’t have to do any of that! I just got pregnant so easily!” And laughs.
I’m not kidding you. She laughs at the misery of others and her amazing good fortune. One of these days I’m either going to punch her, or tell her what I’m thinking. Which is “Me, too. I’m glad you never had to go through any of this, because you couldn’t take it.” Nothing says “You’re a Freak” like that kind of statement.
My next example is a conversation I had with a family member who has expressed absolutely zero interest in our fertility situation until a recent phone call. Which, I have to say, was lovely and all that, but also really strange after two years of completely ignoring the situation.
It’s hard to catch someone up after two years of constant flux and ordeal. She then said “I wasn’t sure if you wanted to talk about it or not.” Um…yeah. I have a blog about this, ya’ll. It’s pretty much all I do talk about, it seems. Asking how it’s going makes me feel like you care, like you’re interested, like I’m not alone. The only reason I don’t talk about it 24/7/365 is because I know how that would annoy people.
So instead I wait to be asked, and feel separated from my family.
Finally, a very sweet friend recently made a comment that showed me just how much people must view me through what I’ve come to think of as The Infertility Filter. After all, it doesn’t just color how I see the world, but also how the world sees me.
We were talking about her family, and her new niece. She related an adorable story about her nephews as well. We rarely get to see them, so it was neat to catch up and think of them as little people and not as the babies we last saw. We parted ways and about 10 minutes later my phone beeped. She texted to apologize for her story, because she thought the content might have been inconsiderate and hurtful given our infertile state.
Granted, after I spent the next ten minutes really thinking about it I was able to see how someone could have taken offense or been hurt, given the actual content of the story she shared. If they were seriously sensitive and felt the world revolved around them. I, however, love to hear stories about other people’s kids — I spend 5 days a week caring for other people’s children, right?
Even though I was completely un-offended and hadn’t spared it a second thought until she texted, I appreciated her concern.
But I also had to wonder — who else is censoring what they say because I can’t get pregnant? Are we the topic of conversation when we’re not there? Are we your dinner conversation? How often are we referred to as “Brian and Andrea. They can’t get pregnant.” Or “this couple we know who can’t have a baby”.
I hate being pigeon-holed anyway, but to be ostracized by perfectly well-meaning people is kind of a bummer in and of itself. How many stories are we not hearing because someone is worried about our reaction or our feelings? Sure, it’s thoughtful. But it’s also terribly isolating.
A lot of the time, people with infertility isolate themselves. We really don’t want to make people uncomfortable or uneasy. We don’t want to be seen as abnormal, so we keep our problems hidden away. We don’t put our needs and concerns on the prayer list at church. We don’t ask friends to accompany us to the doctor for moral support (at least not after the first time you turn us down).
We don’t offer information, and we are crushed when you don’t ask. Quietly crushed. It’s so terribly easy to believe that we are all alone in our struggles, especially for couples who don’t know any other infertile couples. The longer we’re infertile, the more it builds up, and the lonelier we become.
That’s one reason I blog. Granted, I started blogging before we were “trying”, and I’ll hopefully still be blogging long after we have children, so it’s not technically an “infertility blog”. And yet it is.
I found that when we really started having trouble getting pregnant a lot of my information, ideas, inspiration, and encouragement came from the blogging world. I learned more from other infertile people than from doctors or journal articles. I want to give back to that. I want to be a source of information and encouragement to other infertiles out there who have just received a diagnosis, or just finished their fifth failed IUI, or who have discovered that Clomid doesn’t get everybody pregnant right off the bat.
So I make it a point to live our story out loud and proud. I won’t act ashamed of my infertility, and I won’t pretend it doesn’t exist to make someone else comfortable. I won’t be silent about something that affects so many people, and I won’t make anyone else feel embarrassed either by their fertility or their ability to pop out kids like it’s easier than breathing.
If you got here through a search, you are not alone. Pull up a seat, pop open a bottle of water (no booze in the infertile zone except CD 1-4), and share your stories. Ask questions.
If I can’t answer, maybe someone else can. Let’s learn from each other, and lift each other up. Need prayer? You got it. Need to gripe about how much this sucks, how cold your doctor’s hands are, or how much you really hate scheduled nookie? Go for it — we’re listening.
You are not alone, you don’t have to be isolated, and you are okay.
If we are all determined to do this right out loud, infertility does not have to separate us from them.
by Band Back Together | Jul 1, 2015 | Invisible Illness, Medical Mystery Tour, Pain And Pain Disorders, Psoriasis |
I had a moment of realization this morning. I don’t KNOW that I have psoriatic arthritis yet. I’m clinging to this diagnosis, yet I haven’t seen my xrays. I haven’t seen the blood tests. Who knows what they say? I know something’s wrong. I know it’s not all in my head. But there are so many things it might be.
Let’s lay out, 100% what we know about me.
1) I have psoriasis. My elbows and feet are flaky, itchy, painful, masses of skin problems. I’ve had psoriasis for as long as I can remember. FOREVER.
2) My hands hurt. My hands hurt every morning when I wake up. It takes an hour of slowly moving my fingers to be able to get up and brush my teeth and hair. To get dressed. Sometimes I can’t handle buttons or zippers at all. Some days my husband has to open doors for me – not because he’s a gentleman, but because I can’t turn the knob on my own. Sad but true: I didn’t quit smoking to be healthier. Or to save money. I quit because I couldn’t consistently use a lighter or matches and holding something so narrow hurt my joints.
3) I have hyper-mobility syndrome. Every joint in my body extends past the normal set-point. This is partially why no one believes how much I hurt… my joints are still moving in the normal range of motion! But, doctor, they used to move MORE. Apparently that’s not enough.
What I know, 100%, is that I hurt. Sometimes a little. Sometimes a lot. Movement is good – to a point. Resting too long makes my joints stiff. I’m finding myself more frequently getting feverish without being sick. In general, my temperature is higher than it used to be. The shapes of my joints are changing. The color of my skin changes with the level of inflammation. When I hurt, my hands swell to twice their size or worse. My fingers look disgusting.
So, what’s wrong with me Doc?
I’m clinging to psoriatic arthritis because even though it’s life-long pain, there are treatments. It could get better. At the very least, it could stop getting worse. That’s all I’m asking for now – that today’s pain is the worst it is going to get.
by Band Back Together | Jun 30, 2014 | Child Protective Services, Chronic Illness, Ehlers-Danos Syndrome, How To Help A Friend With Chronic Illness, Invisible Illness |
For many, becoming a parent is an inherent, indescribable experience that subconsciously transforms you into a fiercely protect caregiver. When your child becomes ill, your natural inclination is to seek medical attention and abide by the doctor’s orders. However, if the illness is caused by a complex medical condition, sometimes answers are not as easy to find. There comes a point in which, after numerous attempts to find the answer, the burden of proof appears to be placed upon the families or even the patient themselves.
With the embattled medical negligence case between the Pelletier family, Boston Children’s Hospital and Massachusetts Department of Child and Family Services (DCF), it brings to light the struggles of treating a complex and poorly understood medical condition, patient and family rights, and quality of life issues. I am not a medical expert, I am not a lawyer, and I do not know the Pelletier family. I am someone who struggles with a rare medical disorder, and thirty years ago I was Justina Pelletier.
In May of 1984, after numerous hospitalizations, tests, visits with specialists and multiple incidents of respiratory arrest, local doctors in collaboration with Boston Children’s Hospital were out of answers and filed a complaint against my parents with DCF. The complaint was based on unsubstantiated claims by someone who claimed to be an “acquaintance.” There was no home visit, no interview, not even a second opinion from an unaffiliated medical expert. My parents were accused of medical negligence even though they followed the advice of the pediatrician and the hospital’s attending physician.
Reading the report, I found it not only to be inflammatory but completely devoid of any factual evidence. There was no mediation or care plan developed between the hospital and my family, only threats echoed through the Department of Children and Family Services. When my father questioned the DCF case manager on the legitimacy of the accusations, her response was that she read the report and “just knew.” While I understand the intended purpose of these investigations is for the best interests of the child, that is not what happened with my family and it doesn’t appear to be the case for the Pelletier’s.
When you look at the Justina Pelletier case, it is mind-boggling; it feels like there has to be something more to the story that’s not being told. How could a world-renowned hospital and an agency dedicating to protecting children be responsible for the implied child abuse and child neglect? If you do not have firsthand experience, it’s hard to imagine. For my family and I however, we feel overwhelming compassion after every press release for Justina Pelletier.
Luckily in my case, my parents were able to reach an outside specialist who performed an emergency bronchoscopy – a procedure Children’s Hospital was capable of but failed to do – and located the source of my life-threatening respiratory distress. A rare structural birth defect called an “innominate artery” caused my aorta to cross over my trachea, crushing it, and in conjunction with a smaller lung defect would have cost me my life had my parents not pushed for more answers. Approximately one month following the DCF investigation, surpassing typical life expectancy for the defect, I had lifesaving cardiac surgery at Massachusetts Eye and Ear Infirmary, a world-renowned teaching and surgical facilities for disorders of the head, neck and chest. Had the Department of Children and Family prevailed, it would’ve killed me.
My health struggles did not end following the surgery. After twenty years of multiple surgeries, injuries, and complications, I was diagnosed with ehlers-danlos syndrome. The genetic specialists at Brigham and Women’s Hospital of Boston compared my medical history and, combined with my clinical presentation decided that I fit the profile for the hyper mobility sub-type of Ehlers-Danlos syndrome. My defective collagen and its systemic effects validated my experiences and helped me build a care plan with my team of specialists. In doing so, it helps ensure the best quality of life possible. Justina Pelletier and all patients with complex medical problems deserve this.
“Doctor shopping” is a term thrown around when a person seeks answers from multiple providers or alternate treatment. Being proactive and locating appropriate treatment is not doctor shopping. Complex medical conditions do not equate psychological imbalance or parental medical negligence.
Now that the state of Massachusetts has been granted permanent custody of fifteen-year old Justina, the irony is inescapable. If Justina’s condition is purely psychosomatic, as suggested by Boston Children’s Hospital, and her parents are to blame? Why does she continue to deteriorate whilst presenting with tangible physical symptoms? If her parents have not been permitted contact with her, surely there has to be a more logical answer. The fact of the matter is Justina Pelletier is being punished for being ill while the witch-hunt against her family plays out on a national platform.
My hope is that Justina is as fortunate as I was and receives the medical care she so desperately needs … before it’s too late.
by Band Back Together | Oct 9, 2010 | Chiari Malformation, Chronic Illness, How To Help A Friend With Chronic Illness, Invisible Illness, Pain And Pain Disorders, Trauma |
If you saw me walking down the street, you wouldn’t see the 8 inch scar up the back of my neck and head. You wouldn’t know that through that 8 inch scar I had bones removed, I had parts of my brain touched and adjusted. That I had a piece of a cow heart sewn into the lining of my brain.
If you saw me walking down the street, you wouldn’t know that the area around that 8 inch scar is in constant pain. You wouldn’t know that behind the smile is someone who wants to cry all the time. Who wants to lie in bed and wallow in pity for the pain that they’re carrying. You wouldn’t realize that when I tip my head side to side that I’m desperately looking for any movement, and little change that will reduce the pain I have. That even though I haven’t said anything to you, I am suffering badly.
If you saw me walking down the street, you wouldn’t realize that my left hand doesn’t work well. You wouldn’t notice that when I carry a bag of groceries in my left hand that my pinky finger never even gets looped in the bag handle. Or that even though my ring finger might be looped, you could pull it out with the greatest of ease. It’s a dummy finger. It’s there for appearances, and that’s it.
If you saw me walking down the street, you wouldn’t know that I have very little strength in my arms or my legs because last year I had to spend more than 2 weeks laying completely flat on a couch because spinal fluid kept pouring out into my back. And that just 2 weeks of strict bedrest can result in a strength deficit that can take a year to regain under the best of conditions. You wouldn’t realize that if I was given a 15 pound dumbbell that I would only be able to do one bicep curl before having to quit. You wouldn’t realize that I am weaker than your 6 year old child.
If you saw me walking down the street, you wouldn’t know that my balance is very poor. You wouldn’t know that neon lights confuse my vision so much that I nearly fall over. You wouldn’t know that I can’t touch my finger to my nose when sober about half the time. You wouldn’t know that laying down at night makes me feel like my feet are going to flip over my head.
If you saw me walking down the street, you’d never know. My battles are quiet, my scars are hidden. But they are real. Just because you can’t see them doesn’t mean they don’t hurt, that I don’t struggle every single day. Just because I’m up and about doesn’t mean I’m not in pain, doesn’t mean that I’m faking my symptoms or exaggerating them. Just because I go on vacations and make it to my morning class most of the time doesn’t mean I am healthy or capable of doing everything you can.
If you saw me walking down the street you’d never know that I have permanent disabilities. That I have to fight to get the help I need because I look fine. You’d never know how much it adds to the hurt and frustration when people say that I look fine, or say that it can’t hurt that bad because I’m up doing x, y and z.
If you saw me walking down the street, you’d still have never walked a block in my shoes. You’d never have walked a block in my pain, in my dizziness, in my weakness, in my fears. You’d have just seen a girl who looks like you. A girl who wishes that her insides matched her outsides. A girl who would give the world to be what you think she is.
by Band Back Together | Sep 6, 2010 | Anger, Chronic Illness, How To Help A Friend With Chronic Illness, Infertility, Invisible Illness |
Before I start, this is not your typical “I can’t have a baby post.” I am not the face of infertility, at least not as far as I know. I’ve never lost a baby. I’ve never even tried to get pregnant.
However, I do have Spondylolisthesis & Spondylosis which, in shorthand, means my vertebra on L4, L5, and S1 have less space between them than they should and have slipped forward.
This causes the muscles in my mid and lower back to try and compensate for what my spine can’t do, which leaves me in near-constant pain. I currently take medications for the joint inflammation and the pain. If I were to get pregnant, I’d have to stop taking the pain pills in the last trimester, be on bedrest for at least that long, and have to choose between breastfeeding and pain pills.
I’ve trolled through every forum related to my condition and pregnancy. It seems most women have experienced horrific pain during pregnancy that, in some cases, never went away. Many say that though their children are worth it, getting pregnant was the worst mistake they’ve in regards to their back problem. Some doctors advise having surgery to fuse the slipped vertebra together, a surgery with a six month recovery time, before attempting a pregnancy.
Even if I could quit work and devote myself entirely to a pregnancy, I worry the pain will make it impossible for me to care for a child. As it is, it takes everything I have just to get up the subway steps coming home from work. If I have to stand for the whole forty minutes on the train, I’m crying by the time I get home.
When I consider how many times a day a baby needs to be picked up, how heavy a car seat is, and how much energy it takes to keep up with a toddler, I know it’s totally out of my physical capacity. Plus, both Spondylolisthesis and Spondylosis are hereditary and I’d never want to pass this kind of suffering on to my child.
I know there’s always adoption or surrogacy, but they’re just not for me.
Selfish as it may be, I want the experience of carrying and delivering our child. I’ve spent a lot of years telling myself I didn’t want kids, but now that I’m with an amazing man, the tick-tocks of the clock are getting louder and I think I may want them…and the idea that I probably don’t have the option is crushing. When I see pregnant women or little girls with My Love’s shiny black hair, I’m hit with a wall of sadness and longing. Something inside tells me that’ll never be me.
So The Band, what do I do?
How can I accept that pregnancy and raising a child aren’t things I’m physically capable of doing?
