How Many Diagnosis’ Can One Person Have?

Well, I Don’t Know, But Let’s Add Another One

---

Invisible Illness

I know plenty of people have it worse than me. One of my diagnosis’ isn’t cancer, or something that requires me to amputate my legs. There’s my disclaimer, I am a whiner and a pessimist, but I am self aware. An invisible illness is just what it sounds like, something that usually causes outsiders; friends, family, co-workers, and even healthcare providers, to think or even say, you don’t look sick. These illnesses are often hard to diagnose, hard to explain, and even harder to treat. This can be due to the fact that they are comprised of subjective symptoms, like headache, fatigue, pain. Symptoms that are also symptoms to a myriad of conditions.

It’s sad to say, gender is a factor that needs to be considered and discussed. Illnesses in this category, such as autoimmune diseases, disproportionately affect women more than men. And it’s well studied and documented that women are treated different by medical providers, often associating symptoms with emotional instability and psychosomatic symptoms related to mental illness. Speaking of women, another invisible illness I have, and that affects 1 in 8 women, is infertility. I know that infertility can be male factor as well. But it’s no well kept secret that fertility is majorly a women’s duty to own and a pregnancy is a women’s duty to carry through. Do we think most insurances companies would still include next to zero fertility coverage if it main effected men? Yea, I don’t think so. Don’t get me started on how Viagra is covered by insurance but fertility medications for an IVF cycle usually are not.

You can read about my long fertility journey and journey with motherhood. Oh God, did I just say JOURNEY? Not once but twice?! 🤦🏼‍♀️

Severe Joint Pain and Unimaginable Fatigue?

“It’s Most Likely Depression”

It took almost 10 years to get my Rheumatoid Arthritis diagnosis. I went to multiple doctors, did multiple tests. The first rheumatologist I saw, literally told me when I asked for something to help the pain if she at least wasn’t going to figure out my diagnosis, “you’re a nurse, you know for pain medicine all there is are NSAIDS, Tylenol, and narcotics. And I am not going to give you narcotics, you’re only 23 you will just get addicted.” I remember that in my mind so clear, word for word. She also told me that I was most likely just depressed. At the time, I actually wasn’t. The stress I was going through was making me depressed. But I said, whatever give me the meds. If they help, call me what you want. Tried Lexapro, nothing. Tried Cymbalta, nothing. Then they put me on Lyrica for possible fibromyalgia (which many doctors do not even think is a real disease and think it is related to depression and borderline personality disorder), didn’t work. Thankfully, once I moved to NC and went to Duke Rheumatology, they seemed more up to date on the latest research and took me more serious. But even though I eventually got someone to take me seriously, I have major trauma from that first few years of joint pain and doctors visits. 

One of the worst parts of those years, I mean other than severe pain that brought me to the emergency department a few times because I thought I might pass out from the amount of pain, was not having a name. When people asked, what’s wrong, why are you limping and your hips are so stiff? It always have to prompt a conversation or story. “Well, I have this mystery illness that is probably autoimmune, maybe arthritis, maybe Lupus, maybe all in my head per a few doctors? Insert shoulder shrug”. Filling out medical history when seeing a new medical provider, like an my fertility doctor, or an OB/GYN, and just checking other: joint pain.

I had such a negative feeling over mental illness and that if I admitted that I had one, someone would say “AH HA! I knew it” That that doctor would be right, it was depression all along. So when I started having anxiety, it took me a very long time to admit it was the problem, and even longer to seek help and say it out loud. A dangerous amount of time that just made me feel out of control and very hard to get a handle on it. 

Newest Diagnosis

Recently, I decided to see my first gynecologist since moving to NC. I never “needed one”. Because of my established infertility history, I was able to go straight to a reproductive endocrinologist (fertility doctor) without a referral. I thought, I’ll get pregnant then I’ll go to one of the doctors that deliver at my hospital. Waiting waiting waiting. Never happened. Again, fill yourself in, by clicking here.

I got my pap smears from my PCP, I wasn’t on contraception or anything so I never went. I almost went once, when I was going to start on methotrexate, a medicine for RA. It’s a strong medicine and pregnancy category X. Which means, it will definitely cause miscarriage or major birth defects so the rheumatologist wanted me on a reliable form of birth control, but then we found out I have the MTHFR gene mutation which causes problems with absorption of folic acid, which methotrexate also does, so that option was out. Can my body just ever fucking go with the flow and get on board with the scheduled programming? So again, I was going to go but didn’t. 

I’m Pretty Sure my Mom had Endometriosis

My pain and heavy periods have been getting a little out of control, and I have also finally accepted the fact that I will not be having another baby. At this point, Kylie is almost 9 and getting very expensive with cheer and the cost of living in general is going up, so it just wouldn’t work. I need to move on to the next stage of life. And you know what people say, as soon as you don’t want it, that’s when it happens. So I wanted to talk about using a form of contraceptive and hoping it would decrease my bleeding. Remembering that my dad told me that my mom’s early hysterectomy was due to endometriosis, I mentioned to the doctor that I wondered if endometriosis was a possibility for me and that’s when I realized I had all the signs and symptoms. She said that if I always had that amount of pain and bleeding from the beginning, when I first started my period, then I probably just thought that was typical. Also, I would like to think I have a pretty high pain tolerance, mostly because with all I’ve been through with my body, I know what real pain is. She agreed. It was a great doctors appointment that really gave me hope and felt seen and like someone cared about how I felt.

But that night, while I was researching the Mirena IUD and endometriosis, I started thinking. Thinking about how life could be if this were recognized and treated earlier. And I get angry. Again, failed by my doctors.  A wave of anger and grief overcame me that night, I was so upset and felt so alone. I felt alone in my sadness.

Endometriosis Pretty Much Hit Me Over the Head, or Uterus Actually, and I Still Didn’t See It

Why did I never google endometriosis symptoms? Why didn’t I even think of it when I was dealing with infertility?

Signs and symptoms of endometriosis:

Women who have a first degree relative with the disease (mother) ✅

Pain, especially excessive menstrual cramps ✅

Pain during intercourse ✅

Abnormal or heavy menstrual flow ✅

Infertility ✅

Painful bowel movements, especially during menstrual cycle ✅

Associated with inflammation in the body (hello autoimmune disease) ✅

Literally the only symptom I do not have is bleeding in between periods, but how can I have time, I mostly have only 22-24 day cycles, another sign of endometriosis. No wonder I am such a bitch, I am almost always on my freaking period. Sorry Travis.

So how have I or another doctor never even thought of this or at least mentioned it? I could see if I didn’t have the work up and treatments for infertility, but shouldn’t a doctor have thought of this? If I or someone else would have mentioned this as a possibility, back when I was really trying to have Kylie and trying even harder to have a second baby, I would have definitely agreed to the exploratory laparoscopy needed to officially and definitively diagnose and then the surgical treatments to help clear it which can aid in fertility. What if I had an ablation and then one of the iui’s actually worked? My whole life would have been different. I know, I know, different does not necessarily mean better. Save the mantras. I am in the anger stage of grief right now.

Broken Body, Broken Mind

And if I still wasn’t able to conceive, I would still feel broken but at least I would have a diagnosis, a name. An explanation. This has been a common theme in the stress I have endured with the problems of my body. A name legitimizes your pain and problems. It’s also the first step into treatment.

It feels like a loss, all over again. Time and time again, I am reminded that my body is broken. This is just another “feather in my cap”. And now, not only is my body in shambles, my brain and mind are too. What came first, the chicken or the egg? Would my mental illness be so hard to manage if I haven’t gone through what I’ve went through with my body? If I weren’t made to feel crazy when seeking treatment with my joint pain. If I didn’t have to go through another ordeal and doctor just to get pregnant; something most women are able to do at will. Something a woman is supposed to be able to do naturally to grow their family. 

Mother’s Day

It’s so hard to get people to understand what a toll all this puts me through. If they haven’t been through anything like this, or have great empathy for the situation, they just can’t even begin to understand what it’s like. 

For example, today (as I originally wrote this), its Mothers Day. For many years, Mothers Day was absolute hell for me. My mother died when I was a freshman in high school, so it was never a reason to celebrate, it was just a reminder of that loss. Next, try to experience a Mothers Day when you have a dead mother AND can’t seem to become as mother yourself, oh, and you deliver babies for a living! It’s absolute torture. Every social media post, every Mothers Day brunch you see people out at, and having to try and put yourself to the side and celebrate your mother in law. My first Mothers Day when I was pregnant with Kylie was great. I got a lot of love from friends and family and my first Mothers Day cards and it was lovely. Finally a reason to smile. Each year since, it’s been ok. But still, always something is tugging at your heart from the background, a little hole that can’t be filled. 

Well, this year, on Mother’s Day, for some stupid reason, I thought it was the time to tell Travis about my doctors appointment with the ob/gyn. You would think I was telling him I went to the podiatrist and had a hang nail clipped. No emotion. Even if he doesn’t have emotion about it for himself, how can he not see how hurtful it is to me? Even if you can’t find empathy, in my opinion, anyone, even a sociopath, can usually feel sympathy. I might have even appreciated some pity at that point.

When someone is in pain, you will look pain in the eye… because when it is you, and you look up and someone looks away because you’re in pain, that is the worst loneliness of all.

Brene’ Brown, “Atlas of the Heart” on cultivating meaningful connection with empathy and practicing the courage to walk alongside, not controlling the path, or worse walking away

Again, it’s me. My problem to deal with and get through. I just wish there was someone who could understand. But again, invisible illness. I would probably get more sympathy and understanding if I had a broken leg. 

Loss of Possibilities

I’ve thought before, usually after a major mental breakdown or something of the sort, maybe this is why I couldn’t have another baby. Maybe God knew I couldn’t handle it. That I can barely handle the stress and responsibilities that I have. Sometimes I can have that thought with a clear mind, or in a conversation with my best friend Eureka when she is trying to make me feel better, and look at it as a logical explanation. But other times, I have that same thought and it’s depressing. I’m not even strong enough to deal with my own shit, how could I even think I would be able to be a capable mother to more than one child? Am I even that capable of taking care of the one I have?

To bring it full circle, these are times when I wish I had a mother to talk to this stuff about. I feel like only a mother could begin to understand, and is supposed to unconditionally support you. If you have never felt a mothers love and support, how can you expect anyone else will? I have a half sister, same mom but different dads. We grew up pretty far apart, both physical location and in our personality types, and we are not close at all. I am happy to report, we have just began to repair our relationship. This probably could be a thing a close sisterly relationship would be good for, but we aren’t quite there yet.

This is all I really wanted for Kylie. Of course I wanted another baby for myself. I felt like I didn’t fully savor and appreciate my pregnancy because never in my wildest dreams did I think it would be my last. But I never wanted Kylie to be an only child. I grew up as an only child and it was miserable. I would lie about my relationship with my sister, and ever her brothers from her dad and act like they were mine too, purely because it felt so abnormal to be the only child. Plus, I think that’s a trait of only children: creative minds that tend to wander and maybe get colorful with the truth. 

Adverse Childhood Experiences

I won’t get too deep into this, because it deserves its own post and needs a lot more explanation, but have you ever heard of the ACE scoring system? ACE stands for adverse childhood experiences, and the research shows that having a higher ACE score not only has a huge impact on your mental health, with people who have 4 or greater ACE’s are 12 times more likely to commit suicide, but it also can put you at a greater risk for physical health problems into adulthood like heart disease and lung cancer, studied through something call epigenetics. Well, one of the ACE questions are, “did one of your parents have a mental illness?”. So there’s already 1 point against Kylie. I would have loved to have a sibling for Kylie to go through life with, an additional support when I am not maybe at my best.

the study of changes in organisms caused by modification of gene expression rather than alteration of the genetic code itself.

Epigenetics

So this endometriosis is more than just horrible pain and annoying AF heavy bleeding during my periods that come every 2-3 weeks. It’s likely a contributing factor to my infertility which has impacted my entire life. And it can be treated, that’s the real dagger in my gut. Or maybe, in the uterus. I know that both worrying about the future that you cannot control, and feeling sad about the past that you can’t change is very detrimental to your happiness. But how can you not? Or is that something that some people are able to do? Acknowledge something that has happened, no matter how negative, and just move forward. That is definitely not how I am built. 

The Serenity Prayer

Do any of you know the serenity prayer? It’s traditionally used in Alcoholics Anonymous, said as a group after every AA meeting. Is it normal that I’ve had this prayer memorized since I was a kid? You mean you didn’t spend your time in church basements where people smoked cigarettes and had crappy coffee in white styrofoam cups talking about their hot mess lives? Weird.

Yea, I guess I am going to have to do a post on ACE scores and my childhood.

God, grant me the serenity to accept the things I cannot change,

courage to change the things I can,

and the wisdom to know the difference.

adopted by Alcohol Anonymous in 1941

This prayer is a tool I use to try to remind myself and my anxiety that what has happened is done, and what will be, will be. But don’t dare say to me, “everything happens for a reason”. That shit burns me up.

I would love for anyone who has gone through the pain and struggle with endometriosis or another invisible illness to comment. I would love to hear that other people just might understand.

Share this with any of your loved ones that might relate. It’s hard to endure life when you feel alone. That is the whole point of this blog; a way for me to journal and to hopefully relate to others who are struggling on the inside, but trying to maintain the smile on the outside.

ashley, RN

mental mommy nurse