A smiling woman with curly black hair stands in front of a young child in a pink jacket, in a hospital.
I am Permanently and Totally Disabled because of my pregnancy
In 2011, I made a decision to have a second child. I knew it would be risky. My first pregnancy was hard and I had hyperemesis gravidarum so bad that I was on bed rest my entire first trimester.
I also have lupus and a weak immune system. Lastly, I was finally starting to make some traction in my career and I knew that having another baby, would, at the very least, temporarily take me off the upward professional track that I was on.
However, when I really thought about it, actually, when I really felt what was in my heart, I knew I wanted another baby more than I wanted to advance my career at this time and was willing to endure another tough pregnancy that at best, would leave me on bedrest for 3 months, and, at worst, could be life-threatening.
My husband and I thought and prayed, together and separately, went to all FIVE of my doctors to get their medical clearance. There was never going to be a “good time” for me to be pregnant, but when my lupus symptoms were under control and I didn’t have any organ involvement, this was the best time for me to attempt another pregnancy.
Even though I knew the pregnancy would be hard, I had created a plan. However, because of all the complications, things didn't work out, not even a little, according to “my plan.”
But I am a fighter. It helped that I was 100% in support of getting my baby here and knew that I was willing to die to give her life. I knew the options of death were there, however slim, but that was a real possibility.
But I had an excellent medical team, great health insurance, temporary STD insurance-that turned into LTD-that turned into SSDI, a supportive job, an incredible support system in my family that included full-time childcare for my daughter, and I am incredibly resilient, I was less afraid of the risks. If any of those factors had not been in my life, I am not sure I would have been as sure of my decision to have another child. If any of those factors would have failed, I probably would not have made it.
With my incredible circle of support, I worked hard on recovering my body.
So, fast-forward to today. My baby is now 5 years old in kindergarten, my eldest is 9 and in 3rd grade, my husband and I have been married for 10 years, and, yet, my body has still not healed from my pregnancy. In fact, although I have made some small progress, I am still nowhere close to where I was before my pregnancy.
I was originally approved for SSDI (which is a miracle in itself) for 3 years. I was certain that I would be fully recovered and would probably have developed a plan for to rebuild my professional career in 3 years! So, with all the grit, resilience, and optimism I had, I committed myself to recovering and rebuilding.
I have always been a hard worker and had a strong spiritual connection with God, so I had no doubt that I would be “healed” and back to normal.
Recently I got a letter from SSDI to do a review to see if I was still disabled. It was not 3 years but 4 years from when I was first approved. I had to fill out forms, have doctors fill out forms, take tests, and what was most difficult, and honestly assess my health and ability.
I had to answer questions like these:
Q: Can you cook yourself meals? A: No
Q: Can you take care of your children? A: No
Q: How often are you in bed? A: 3pm-7am
Q: How active are on average? A: I try and walk 30 minutes/ 2 weekly.
Q: Do you need assistance to move? A: Yes, a walker.
Also, all my doctors had to complete similar questionnaires, confirming, legally, that I was still disabled. As I went through the process, at first, my main worry was that I wouldn’t get approved. Because after completing the questionnaire and speaking with my doctors, it was clear to me, that I was still disabled and unable to take care of myself, let alone, work a job.
Two days before I received my certified letter from SSDI. The exact wording was, "we recently reviewed the evidence in your social security disability and claim and find that your disability is continuing. Your next review will be in 5-7 years.”
Instead of relief and happiness, I felt empty and sad. All my doctors had proven to the federal government SSDI review board, that not only was I disabled, but I am disabled permanently and totally with no prognosis for recovery. That’s what the 5-7 year review means.
Now, my doctors didn’t talk to each other, or me, while filing the forms. They, like me, answered questions honestly.
Their questionnaire was similar to mine with questions like:
Can your patient take care of herself? No
Can you patient take care of her children? No
How physically active is your patient on a scale of 1-10? Average from all doctors, 2.
So, a review process that typically takes 2-3 months to complete, only took 3 weeks for me to an absolute “yes, I am permanently and totally disabled” response. The supporting documentation was overwhelming.
It was that moment that I realized how much my body has not recovered. I am no better on December 27, 2017, than I was on December 27, 2011. 6 years later and I am still disabled.
Further honest assessment, I may never recover. My body is permanently and totally disabled because of my pregnancy.
The professional ambitions I had for myself before my pregnancy are no longer possible.
The idea about the type of mother I would be for my children is no longer possible.
The type of wife I want to be for my husband is no longer possible.
The dreams of world travel that include physical things like hiking, swimming, and diving into Lake Victoria are no longer possible.
My body is broken and while I was able to give life to my daughter, the effects of my pregnancy, killed many of my dreams and ambitions for myself. I am not the independent woman with the world open to any ideas and dreams that I had. I will never go on a safari in South Africa. Or climb Mount Kilimanjaro in Kenya. Or do the pilgrimage in France to the Lady of Lourdes. Or cook dinner for my family.
This was my choice and I would make the same choice again, even knowing the outcome. However, I also need to acknowledge the truth, “My pregnancy caused me to be permanently and totally disabled.”
With all the political talk about women's bodies, birth control, pregnancies, and support for mothers, it sucks to know that this conversation is more than theoretical to me. This is my life. I made my choice, with the advice of my doctors, prayers to my God, and lots of conversations with my husband, to have a risky pregnancy. All women, everywhere, need to have the right to choose what they do with their bodies. My case is extreme but not as uncommon as people may think. The United States has the largest case of pregnancy-related morbidity of all developed nations.
The statistics are even worse for Black women, regardless of income or education.
Unless you honestly support programs and things that help to maintain a woman’s health after pregnancy, Your personal thoughts about birth control, abortions, or anything that has to do with my body, are meaningless. Yes, I have a beautiful, active kindergartener, whom I love with all my heart. I also, now, spend most of my days in the bed, unable to care for myself. It’s my body. It’s my consequences. It is my choice.
So, I will grieve the dreams and aspirations I had for my life before my pregnancy. And am slowly coming to embrace and figure out how to live fully with my current limitations. The truth is, a part of me had to die, to give life. And although I love the life I created, I grieve the part of me that died.
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