A raw look inside the life of a chronically ill mom.
Written by Elizabeth, Founder of Red Hairing
One of the hardest parts of dealing with health issues would have to be the guilt. I feel guilt that I am not enough because of my illness. I feel guilt that I am taking away from the life of my partner and friends. I feel guilt that my children do not have the kind of parent that they deserve. I feel guilt that I am in pain, and that stops me from doing many things with my family.
If I had to take all my issues and put them on a list, guilt would rank in first place.
When I first got married I felt horribly guilty when this beast that lived in my insides overtook my ability to work. It wasn’t just the pain, it was the exhaustion, the mood swings, the dullness that overtook my entire being. I had been a vibrant and lively woman who had loved being spontaneous and working while my husband and I dated. “You are always up for anything” my grandmother used to say, but that does not apply to me anymore. We once planned a trip to Disneyland for Valentine’s Day on the 13th, spent the day on a plane, at the park, and flew home that night. It was fantastic! I was soon diagnosed with a myriad of conditions (Endometriosis, Adenomyosis, IC and more) and almost immediately after our wedding (during which chemically induced menopause had me hot flashing so badly that I doubly cherished our winter wedding in the snow) it was as though the life was sucked right out of me. That beast nesting in my lower abdomen became furious and tore me apart.
When I told my husband that I worried I wasn’t good enough for him, he assured me that I was. “Have a little faith in me,” he said. He would carry what I couldn’t. So, I did.
I couldn’t work any longer and I spent far too much time in doctors offices and the ER for abdominal pain that was completely intolerable but invisible to others. My doctors didn’t have an answer for the pain, though one, my OB/GYN, was quick to literally yell at me on the phone when I called at a loss for words and in so much pain that my life, and my husband’s, had come to a standstill. It was my husband who stood by me, heard her yelling from across the room. “Fire her. You don’t deserve that kind of treatment,” he said. I was thankful for his support and I felt horribly guilty. He was working eight hours a day, taking care of me, and still stood by me when I was more of an expensive paper weight than a wife. I couldn’t help but think on that day in February when he had pledged to love me “in sickness and in health” he hadn’t realized just how much that statement would dictate his life.
I couldn’t help but ask myself if he had wasted his life on me?
One year after our wedding, and a new mortgage payment every month, I became pregnant. Like all new mothers I was scared and elated. We had been told that having children would be nearly impossible and we couldn’t help but feel extremely lucky. We immediately bought a new video camera and I started a video journal for our new little bundle.
The morning of week 12, I was breathing easy that we were past the first trimester and we had our first ultrasound scheduled. My mother even came along as we saw the nurse practitioner. I joked that there better be twins in there, but the nurse didn’t seem to have much of a sense of humor. She left the room for over 45 minutes and by the time the doctor came back in it was pretty obvious that things were not okay. The doctor explained that there was no heartbeat and that the baby was measuring only 7 weeks. She told me that I could schedule a D&C or take pills that would induce miscarriage.
Anyone who has experienced a loss can tell you that what followed was a horror story. I lost my mind and my husband had to again be my rock. Here we were with a new house and I was unable to work to make payments on it. The main feeling that overtook me was guilt. I had failed again. My body had failed again. I couldn’t work, I had miscarried a child, and my husband was killing himself to fill in all the gaps I left behind me. This wasn’t fair to him at all and, worse, he was so supportive.
I don’t remember much of 2006. I was in a tailspin of emotional turmoil and loss, but he remembers all of it and he kept it all together while I fell apart. I developed agoraphobia and couldn’t leave the house without having debilitating panic attacks. I spent nearly a year indoors, having my groceries delivered and ordering from catalogs. My husband even ordered all new bedding because, in my grief, I refused to sleep on the same bedding that I had snuggled while I was pregnant with our child. More than once I was on the brink of suicide.
My husband assured me that everything would be okay. He loved me and I just needed to “have a little faith” in him. So, I did. But I never could shake the guilt.
Thankfully, in 2007, we were blessed with a beautiful daughter. She was only 5lbs 7oz full term and she seemed so small and helpless. Her pediatrician assured me “you just have small babies”, but I wasn’t comforted. We were so euphoric over her birth, however, that we didn’t see the train coming.
I spent the next three months crying as I begged her to nurse, but I just didn’t make enough milk. She had horrible colic and screamed for eight hours a day. I felt guilty that I wasn’t able to nourish my child and overwhelmed that I couldn’t calm her cries. I proceeded to take every tincture, supplement, and medication. I saw a lactation consultant several times, but there was no help. My daughter finally stopped trusting my body to satiate her hunger and I was forced to switch to formula at an early three months of age. It was my husband who gave me the strength to stop. He said,“This isn’t bonding. This is torture for all three of us.”
Within a month I was slammed with unbelievable exhaustion, absolutely no appetite, and over 30lbs of weight gain. My mother-in-law and mother switched off days watching the baby since I couldn’t get out of bed and when I went to see my doctor she tested my thyroid. When I didn’t receive a call a week later, I called her. She said, “Everything is fine”. I demanded that she do more since I was not fine and an Endocrinologist diagnosed me with Hashimoto’s Thyroiditis. I later found out that thyroid disease is linked to low birth weight, miscarriage, stillbirth, premature delivery, infertility, ADHD, Autism, breastfeeding problems, depression, and more, but at that time I was simply told to “take this pill and everything will be fine,” and so I did just that.
We ate a very healthy diet, but the weight stuck to me and soon the panic attacks came back. The beast in my belly started to shred my insides again and my OB/GYN put me on birth control which turned me into a complete mental case. Instead of taking my daughter to the park daily, or on walks, I spent all my time in the house, struggling to keep it clean and orderly.
My 4 year old daughter had adjusted to this life. Often she would tell me about what she wanted to do that day with her father, always adding “you just stay here and rest because you don’t feel good”.
I knew that there was more to life, but I couldn’t provide it for my family and I was overcome with guilt about it all. I was not good enough. This was not the kind of wife and mother I had always planned on being, and I had no idea what to do to make it better. I wasn’t guilty because I could do more, but didn’t. I was guilty because I couldn’t do more and knew my family deserved it.
Soon, I adjusted to a new kind of “normal” in which I was tired and overwhelmed but I had forgotten what it felt like not to be, and we wanted another baby. Many will think, they would never have another baby if they were in this situation, but I had forgotten my old “normal”. My husband was the sole earner, and though I could now say I was a stay-at-home-mother as I’d always wanted, I knew that if I could just work a few days a week we would be better off.
I tried working with a family member, but even she had to let me go as I missed too many days of work from sickness or pain and I was not reliable. I couldn’t blame her. I wouldn’t have hired me. My close friend confided in me that she was disappointed in me. When she had met me, in my single days, I had been someone to “look up to” because I lived on my own and took care of myself while being full of life and hardworking, but that it seemed like the moment I got married I just became a whole different person without an individual identity any longer, completely dependent on my husband for everything. The truth was my pain and diseases had taken over around that time, but there wasn’t a way I knew to explain that to her, and she was right. I had become completely dependent on my husband. The guilt of that weighed on me like an anvil on my shoulders.
My friend and I eventually lost touch.
My husband assured me that regardless of our current financial status we would “make it work”, and we started infertility treatments. We weren’t destitute, just not where we wanted to be, and with Endometriosis you don’t know how long you have to build your family. Very quickly I became insane with hormones from all the pills and injections. We spent years on and off the infertility ride. We had three more miscarriages, once losing twins. After the last loss, we decided we were done trying to have another child and that we would be a family of three and that was beautiful.
But there, nagging at my heart, was the guilt again.
We had always wanted more children, but my husband was willing to forgo a future we had planned because of my inability to provide it. At this point the pain, exhaustion, moods, and symptoms were eating up our entire life. My daughter was four and I never had the energy to take her to the park or play outside. The house was in disarray because I simply couldn’t keep up.
Inexplicably, I became pregnant with our second daughter. The pregnancy was amazing, though I was far more tired than I ever had been before. My husband again stepped up. He took over with our daughter, making sure she felt important and not left behind and soon we had a second mouth to feed. I was determined to not have the same issues arise again, fully believing they were within my power to control, but the train hit me again and I didn’t see it coming this time either.
Once more, I didn’t produce enough milk. I read the books, called the La Leche League, ate the lactation cookies, and drank more water than I could imagine. A lactation consultant told me it was my thyroid disease that robbed me of the ability to nurse and that it was not my fault. That alleviated some of the guilt, but now I was aware that my daughter would be able to nurse if I didn’t have an autoimmune disease, and the guilt came right back. I bought a supplemental nursing system and still nurse her to this day, 18 months later.
A year after my youngest child’s birth I was diagnosed with Polycystic Ovarian Syndrome. I found that it was a common diagnosis among Hashimoto’s patients. The same doctor that diagnosed my PCOS, diagnosed Celiac’s disease as well. It is common to have multiple autoimmune diseases.
I piled on 55lbs after our second daughter’s birth. The abdominal pain came back, overtaking me again and I still wrestle with it daily. Now I know that it is partially ovarian cysts, partially Endometriosis and Adenomyosis, Celiac’s disease, and Interstitial Cystitis. I have medication for when the pain becomes unbearable but I have yet to find a medication that doesn’t give me a headache and make me irritable, so I am constantly battling.
Doctors don’t like to hear that you are in a state of chronic pain, especially one that they can’t see or treat. I’ve found that they despise writing a prescription for anything that relieves pain unless it’s for a short time period, even a non-narcotic medication, and they let you know it. Every time I have to refill my medication I am overcome with dread and, of course, guilt. I know I will have to explain this to my doctor, and I know he won’t like this. Will he deny the refill? Will he accuse me of being an “addict” when really I am just trying to function and be present for my family? Don’t I deserve to live my life pain free? I feel even more guilty when I ask myself these questions.
I have spent years looking for alternative ways to live – vegetarian, vegan, pescetarian, and more. I have settled, for the moment, on a very strict Paleo diet without any grains. I am undergoing Hormone Replacement Therapy for PCOS.
The doctor who treats my PCOS is two hours away (one way) and not covered by insurance. My extraordinary husband balances delicious meals around my numerous restrictions, balances the budget around my medical needs, finds a way to pay for the essential oils I rely on, and still manages to remind me that he wants me and no one else in sickness and in health, and I love him for it.
I just can’t help but feel really guilty.
Elizabeth’s blog is called Red Hairing. She is indeed a red head. She is a mother of two little girls. They are her reason for waking up in the morning. Elizabeth is also living with Hashimoto’s Thyroiditis, Endometriosis, Adenomyosis, Interstitial Cystitis, Celiac’s Disease, and Polycystic Ovarian Syndrome. You can find her on Twitter @RHairing.